18,000 Pennsylvanians wait for community-based services
By KARI ANDREN, The Patriot-News
April 23, 2010, 12:00AM

Christa Best, 21, suffers from Fetal Alcohol Syndrome. Best graduated from Susquehanna Twp. High School last year, but even before that, her adoptive mom, Carol Carp, put the wheels in motion to get her into a small group home.Christa Best has a big heart, a love of animals and an ear for country music. 

The 21-year-old Susquehanna Twp. High School graduate is a directional savant — she can tell you exactly how to get back to anywhere she’s been — and is amazingly resilient, her adoptive mother, Carol Carp, says. 

Christa came to Carp as a foster child when she was 7, and although she was only supposed to stay six weeks, the family adopted her. 

Christa has intellectual disabilities and has been diagnosed with severe reactive attachment disorder, a psychiatric illness often found in children who have had severe problems or disruptions in their early relationships. She will likely never hold a job or live on her own, Carp said. 

Carp, 54, said she worries that one day she might be unable to care for Best. Carp has been trying for several years to get Best into a small group home where caregivers could provide the structure and routine she needs. 

“As I get older, it’s harder for me to care for her — she’s strong and bigger than I am,” Carp said. “Other mothers have the same issues. I worry about my health. I work full time and I have other children at home plus an elderly father.” 

Best is one of nearly 18,000 people statewide who are waiting for community-based mental retardation services. Of those, 3,160 are considered to have emergency needs, meaning they could have to move to a state institution if they cannot gain access to community-based services. 

Gov. Ed Rendell proposed a small increase to the community mental retardation waiver program, which would help the state Department of Public Welfare add 150 people, including 100 special-education high school graduates, to the program. 

The program provides services such as home or vehicle-accessibility adaptations, therapy, nursing, educational support and transportation to about 24,500 people, according to the department. 

Lawmakers and advocates for those with disabilities expressed disappointment at a recent budget hearing that the increase was not large enough to accommodate even more people. The mental retardation waiver program is primarily federally funded but received about $623 million in state money this year. 

While providing for a small increase in the waiver program, the governor’s budget proposal also includes a $6 million cut to those who provide the mental retardation services. Department Secretary Harriet Dichter defended the 1 percent cut, saying it’s the first reduction in payments the Rendell administration has posed.

But in March, Sen. Mary Jo White, R-Venango County, said, “I think this is a train wreck waiting to happen.” 

Dicther said the department chose to give the waiver program a small increase rather than prevent the 1 percent cut to service providers to allow a few more people in “a highly vulnerable” group to gain access to community-based services. 

Far more than 150 people need services, and that worries Stephen Suroviec, the executive director of the Arc of Pennsylvania, an advocacy organization for individuals with intellectual and developmental disabilities. He said that even a small funding cut to providers will have a big impact on what providers can offer. 

Rendell “is expecting [providers] to serve everybody the same, but with this much less money,” Suroviec said. “The problem is community providers in this system are basically 100 percent funded with public dollars.” 

They can’t shift costs around to make ends meet the way a business might be able to do, he said. 

Suroviec said about 1,200 people are in the state’s five Centers for the Mentally Retarded and about 49,000 get community-based services. 

“It’s so disproportionate, he said. “The primary system is the community system, and it’s being starved.” 

It costs about $240,000 per person annually to house and serve each person in one of the state’s institutions, said Ilene Shane, head of the Disability Rights Network of Pennsylvania. 

“That’s not a direction you really want to see the state go,” Shane said. “It’s not only inhumane, but very ineffective.” 

Advocates favor keeping individuals with disabilities in their communities with support services, including placements in small group homes, rather than putting them into state institutions. 

The Pennsylvania Waiting List Campaign, which is funded by the Disability Rights Network, tracks the number of people waiting for a variety of community-based services. The campaign estimates that in addition to the 3,160 considered to have an emergency need, another 8,700 people have a “critical need,” meaning they will need services within two years, said Sheila Stasko, the statewide coordinator for the campaign. 

“The people in the critical category are just a heartbeat away from emergency,” Stasko said. 

Disability-rights advocates and lawmakers worry that only 100 graduating high school seniors, compared to 700 students in previous years, will be able to receive support after graduation this year under Rendell’s proposed budget, Shane said. 

Shane said parents depend on their children and young adults having a place to go during the day, or supports to help them live on their own so they as parents can continue to work. 

“When students turn 21, they age out of every program that supports them,” Shane said. “Normally, that’s where the community services would come in.” 

Without funding for supports for recent graduates, especially those who cannot be left alone, parents may be forced to quit their jobs to care for their son or daughter, and the student “will regress terribly,” she said.

Carp said Christa Best receives employment-skills training, which gives her something for her to do a few hours each day, even if Best probably won’t be fully independent. Carp feels that a group home placement would be the best thing for Best in the long term. 

“A group home is good and would provide what she needed,” Carp said. “She’s not getting the attention she needs [here], and she needs a lot of attention.”

Kentucky Post
Jessica Noll

FRANKFORT, Ky. – Gov. Steve Beshear Wednesday signed legislation that will increase the amount of coverage health insurers must provide for autism spectrum disorders to insured individuals in large and small group plans, as well as the state employee health benefit plan.

HB 159, sponsored by Rep. Jeff Greer, of Meade, provides coverage for the diagnosis and treatment of autism spectrum disorders for individuals between the ages of 1 and 21, including coverage in the annual amount of $50,000 for individuals who are 1-6 years of age, and coverage in the annual amount of $12,000 for individuals who are between the ages of 7 and 21.

The new law also requires that individual and small group market health benefit plans provide coverage for autism spectrum disorders in the amount of $1,000 per month for pharmacy care, psychiatric care, psychological care, therapeutic care, applied behavior analysis and rehabilitative care for the treatment of autism spectrum disorders.

"Supporting the health care needs of Kentucky’s children has been one of my top priorities as Governor and autism is a disorder that is increasingly impacting many Kentucky families," said Beshear.

"The Autism Society of America estimates that autism and its associated behaviors have been estimated to occur in as many as one in 500 individuals. In signing this much needed legislation, I am happy to say that this administration and this General Assembly are helping these families cope with this developmental disability by removing some of the treatment cost barriers that have kept these young people from getting the care they need."

"I am so proud to have sponsored this landmark legislation that will finally allow affordable health care for children and adults with autism," Greer said. "For too long, families have struggled financially trying to obtain the medical therapies autistic patients need. House Bill 159 was the product of consensus, bipartisanship and common sense and I am glad that it is now law in Kentucky."

The legislation also creates the Kentucky Applied Behavior Analysis Licensure Board for a practitioner of applied behavior analysis, a therapy proven effective in treating autism spectrum disorders.

The new law goes into effect Jan. 1, 2011.

April 15, 2010, 8:48 a.m. EDT 

Walgreens Recognized as Private-Sector Employer of the Year for People with Disabilities

DEERFIELD, Ill., Apr 15, 2010 (BUSINESS WIRE) -- Walgreens has received recognition as "Private-Sector Employer of the Year" by CAREERS & the disABLED magazine for its commitment to recruiting, hiring and promoting people with disabilities. The company was also selected as one of the top five employers readers would most like to work for or believe is progressive in its hiring practices. Walgreens will be honored by the magazine this May in Boston.

"At every level, we do all we can to emphasize people's abilities and strengths," said Walgreens senior vice president of supply chain and logistics Randy Lewis, who leads of the company's disability employment initiative at its distribution centers (DCs). "We've been able to successfully make a meaningful impact on the lives of all who touch this initiative from team members and parents to managers and executives. We've done this while meeting our business objectives and doing what's right for the company."

In 2007, Walgreens formalized its plan to make bigger strides in the employment of people with disabilities with the opening of the first of its newest generation of DCs in Anderson, S.C. Today, people with disabilities make up 43 percent of the facility's workforce. Employees with disabilities have been trained to work side-by-side with other team members -- with the same productivity goals, earning the same pay. Disabilities range from autism and mental retardation to hearing, vision and other physical impairments. Due to the successes in Anderson, Lewis created a company goal to fill 10 percent of its production jobs at all DCs with people who have disabilities by the end of 2010. Walgreens also mentors other companies to share valuable insights and help them shape their own disability inclusion efforts.

Last month, Walgreens launched a pilot program aimed at hiring people with disabilities for 10 percent of service clerk openings at its Dallas/Fort Worth area stores. Training for the pilot, developed in conjunction with the Texas Department of Assistive and Rehabilitative Services (DARS), will prepare candidates for Walgreens staff positions, other jobs in retail or customer service positions that require similar skills. The company also plans to work with DARS to help candidates with job placement.

"This is the 18th year in which CAREERS & the disABLED magazine has honored employers who have made a difference in the lives of people with disabilities," said publisher John Miller. "We are pleased to name Walgreens for its commitment to recruit, hire and promote people with disabilities."

Walgreens (www.walgreens.com) is the nation's largest drugstore chain with fiscal 2009 sales of $63 billion. The company operates nearly 7,500 drugstores in all 50 states, the District of Columbia and Puerto Rico. Walgreens provides the most convenient access to consumer goods and services and cost-effective pharmacy, health and wellness services in America through its retail drugstores and Walgreens Health and Wellness division. The division includes Take Care Health Systems, the largest and most comprehensive manager of worksite health and wellness centers and in-store convenient care clinics, with more than 700 locations throughout the country.

Living with autism: A father's story, Fortune (blog)
April 14, 2010, 11:51 am

April is National Autism Awareness Month–the time to talk about a disability that affects one in every 110 births in the U.S. and almost 1 in 70 boys. The lifetime cost of caring for a child with autism: $3.5 to $5 million, according to The Autism Society. But all the money in the world doesn't make dealing with autism easy. Here is one man's story about how his son's autism changed his life. In 1992, Harry Slatkin left Wall Street to start a business–home fragrances and candles, of all things. He sold the business to Limited Brands (LTD) in 2005 and since then has used his money and his power for the good of the cause.

Guest Post by Harry Slatkin, President of Slatkin & Co., and President of Home Design, Limited Brands

I have ten-year-old twins, David and Alexandra. When my son was 18 months old, he was diagnosed with autism. It rocked my world.

I’d always felt as if I had control over almost every aspect of my life, and especially my business life. But after spending hours reading about autism on the Internet that first day, I was silent and I was scared.

My wife, Laura, had been traveling on business in Texas. I had to break the news to her that night when she arrived home. We cried ourselves to sleep in each others' arms, knowing that our lives would never be the same and that our son's life would be a battle.

The next day, Laura decided to get every book, paper, and anything else she could get her hands on that had been written about autism. We learned the different degrees of autism spectrum disorders from Asperger to autism and all that lies in between. We read things that I wish we hadn't. Too much information can sometimes be a hazard–like knowing that some children smear and/or eat their feces or have wild tantrums. It went on and on.

I would wait to see if those moments would happen.

And over time, of course, they did.

Although nine years ago, autism wasn’t in the press very often, Time had published the first major cover story, and it was about the Yale Child Study Center specializing in autism. The first doctor we reached out to was Dr. Fred Volkmar at Yale Center, and when we called, we were told it would be a two-year wait. We have a friend on the board of Yale, so we got in to see Dr. Volkmar the next week.

Hearing about that two-year wait was such an “aha” moment for us, though, that we needed to do something. So with the same fervor that helped us start our business, we created a foundation to combat autism. We started the New York Center for Autism (NYCA), the first charter school for autism in New York State. Then we funded a program at Hunter College to train public-school teachers about autism. At the time, all “special needs” children were being lumped together in the educational system, and we knew that with autism, it's crucial to begin working with the child as early as possible.

Both Mayor Bloomberg and School Chancellor Joel Klein were amazing. They said yes to us from the start.

Today, my wife and I sit on numerous boards, including Autism Speaks (autismspeaks.org). We recently signed an agreement with New York-Presbyterian Hospital, Columbia University and Weill Cornell Medical College to build a major medical facility on 214 acres in Westchester that will be dedicated to autism research and the study of the brain.

We travel the world and visit autism sites, speaking with families in need of help and answers. My company, Limited Brands, has been extraordinary. Three years ago, the company, along with White Castle, co-sponsored the first Autism Speaks walk in Columbus, Ohio. We got the President of Ohio State, Dr. Gordon Gee, to commit to creating a major autism facility on campus. And at last year’s walk, we got the Governor of Ohio to commit, live on NBC at the finish line, to fight for insurance reimbursement. So many companies have joined the fight–like Home Depot (HD) and Toys “R” Us, which has started a training program for adults with autism to work in its warehouses. These employees have higher productivity than other workers.

My son no longer lives with us, as it became just too difficult for him. He is on the severe side of the autism spectrum. The school we chose for him, The New England Center, has made David happy. He's learning and he comes home often. We love him deeply.

Autism has forced me to learn a great deal about the results that can come from total commitment and hard work. Nine years ago, I could never have imagined that one day, my wife and I would be having medical discussions at the level we are. On any given night, you might come to our home for dinner and sit next to Tom Insel, the Director of the National Institute of Mental Health, or Dr. Jim Watson, who discovered of the structure of DNA, or Dr. Herb Pardes, CEO of New York-Presbyterian Hospital.

So, even as my family’s world has been profoundly affected by autism and it has been extremely difficult, a whole new world has opened up to us. I think back to when Laura and I were starting Slatkin & Co. and we had to “sneak” candles into Kensington Palace (because they were American-made) for the late Princess Diana, who was a big fan of our line. “If I can make a difference in one child’s life," Diana once told me, "then all my efforts will be worth it.” I still take her words to heart. Someday we will find a cure for autism. Until then, we'll make each day the best it can be, and help each child that we can. One life at a time.

April 12, 2010

Highlights from the 2010 Disability Policy Seminar, April 12-14
Hyatt Regency Washington on Capitol Hill

Working Together for a Future that Works – Presented by The Arc, UCP, AAIDD, AUCD, NACDD, SABE

Jeffrey Crowley at the 2010 Disability Policy Seminar

Jeffrey Crowley, Director, Office of National AIDS Policy and Senior Advisor on Disability Policy in the White House, spoke to over 500 disability rights advocates gathered in Washington for the 34th Disability Policy Seminar.  Crowley said health care reform is critical to economic recovery along with other initiatives of the Obama administration.  Calling health care reform a major advancement for disability policy, he pointed to several key components for the disabilities community:

• Extend Medicaid to all people up to the poverty level to provide more lower and middle income families health care coverage
• Long-term supports and services and the CLASS Act
• Community First Option
• Money Follows the Person

Other important health care reform victories are banning preexisting condition for children as reasons not to ensure and better regulating the private insurance system. 

Kicking off an entire day focused on health care reform, Mr. Crowley said that the Department of Health and Human Services would take a lead role along with the Department of Treasury and the Department of Labor.

Health Care Reform/Medicaid:  What’s in the New Law?

This panel featured moderator Millie Ryan, Executive Director, Alaska Governor’s Council on Disabilities and Special Education and Chair, Public Policy Committee, NACDD.  Speakers Marty Ford, Director, Legal Advocacy, Disability Policy Collaboration and Liz Savage, Director of Health and Housing Policy, Disability Policy Collaboration briefed attendees on all of the major disability related components of the Health Care Reform Act:  preexisting conditions, lifetime and annual caps, long term services and supports and the CLASS Act.

Plenary Session – Health Care Reform – The Law from a Disability Perspective

This panel was moderated by Mark Lezotte, Co-Chair, Legislative Agenda Steering Committee, Disability Policy Collaboration.  Speakers:   Peter Thomas, Partner, Powers, Pyles, Sutter & Verville and Co-Chair, Health Task Force, Consortium for Citizens with Disabilities; Connie Garner, Director, Disability and Special Populations, Committee on Health, Education, Labor and Pensions and Howard Bedlin, Vice President, Public Policy and Advocacy, National Council on Aging.

These speakers provided the rationale for why our nation needs health care reform with an emphasis on the provisions dealing with disabilities.

Plenary Session – Action Planning for Health Care Reform Implementation

This forum moderated by Paul Marchand, Staff Director, Disability Policy Collaboration, engaged participants in an interactive discussion on health care reform. Participants were asked to identify priority issues that all attendees might consider when they return home and do their part in implementing health care reform.

Word Play: Healing voices
Narrators with autism and Asperger's Syndrome provide unexpected perspectives on the worlds of childhood and maturity.
By Sonja Bolle, latimes.com

April 11, 2010

Is there anyone among us who does not know, or know of, a child with an autism spectrum disorder? Whether diagnostic criteria are allowing us to identify more individuals, or something in the environment is causing more autism, or our social habits and educational guidelines no longer encourage families to isolate kids with developmental differences, there are more children with autism and Asperger's Syndrome in our classrooms, on our sports teams and in our lives.

Since one of the symptoms of an autism spectrum disorder is social difficulty, there is an awkwardness fitting these children into groups. Other children find them hard to make contact with, because they often do not pick up on the social cues -- facial expressions, verbal play -- that kids learn to make friends. One goal of integrating kids with these disorders is to help them develop social skills. Another is to give mainstream kids a sense of the variety of human experience. Wouldn't it be desirable to help everyone find a way to make contact?

Here is where fiction can help: by showing a reader the world from another point of view. An extremely popular pair of children's books -- " Al Capone Does My Shirts" and "Al Capone Shines My Shoes" -- have a secondary character with a developmental disorder that goes unnamed because, as author Gennifer Choldenko explains in an author's note, autism was not identified at the time of the story's setting in the 1930s. The main character's sister begins as a burdensome charge whose odd habits embarrass her brother in front of his new friends, but she ends up being accepted in the society of children and affecting the course of the story materially.

Other novels are telling their stories more daringly from the point of view of a character "on the spectrum." In Kathryn Erskine's "Mockingbird" (Philomel/Penguin: $15.99, ages 10 and up), 10-year-old Caitlin has lost her brother, the one person with whom she felt accepted and at ease. Her discovery of the concept of "closure" helps her come to terms with her brother's death. Caitlin's often clumsy attempts to find a path to closure end up lighting the way also for her father, who in his grief is even more isolated than she is.

Although "Mockingbird" may sound like a distressing read, the emotional distance created by Caitlin's Asperger's qualities lowers the temperature of the drama and makes the experience, like so much in Caitlin's life, a struggle to make sense of things that are worth puzzling out.

Nora Raleigh Baskin's "Anything But Typical" (Simon & Schuster: $6.99 paper, ages 9-12) underlines the delicate matter of disorder labels by making fun of the "alphabet soup" used to cover a wide range of individuals. Writing about himself briefly in the third person (before trying to maintain a first-person point of view for the rest of the book), sixth-grader Jason Blake says he was "diagnosed with ASD, autistic spectrum disorder. But his mother will never use that term. She prefers three different letters: NLD, nonverbal learning disorder. Or these letters: PDD-NOS, pervasive developmental disorder-non-specific. When letters are put together, they can mean so much, and they can mean nothing at all."

The labels themselves are distancing. When Caitlin's father observes that she had a TRM at school, she substitutes "That Reminds Me" for the far more disturbing words he has in mind, "Tantrum Rage Meltdown." Caitlin, with Asperger's, is offended by being associated with an autistic boy in her school, until her counselor points out that she seems to consider herself above him in the same way that other students consider themselves above her.

"Anything But Typical's" Jason refers to the other kids in his school as "neurotypicals." He expresses himself in fiction and through the intermediary of an online story-writing community finds himself drawn to someone who might conceivably be considered a girlfriend. This book pushes past the difficulty of making friends to the infinitely trickier area of making romantic connections.

If we are reading these novels as primers on getting along, the first lesson is that just because kids are hard to relate to, it doesn't necessarily mean they don't want to relate. In fact, these characters expend enormous effort to match their behavior to others' just to fit in. They study the Facial Expressions Chart to learn the clues to reading emotion on others' faces. When Jason describes trying to match the cartoon emotions on the chart with the infinitely more subtle expressions of real life, it seems amazing that most people can interpret faces intuitively: "Why are they wrinkling their forehead or lifting their cheeks like that? What does that mean?"

Ted, narrator of Siobhan Dowd's "The London Eye Mystery" (Dell/Yearling: $7.50 paper, ages 9-12), tries to follow his teacher's advice: "If I learn how to be like other people, even just on the outside, not inside, then I'll make more friends."

The most comfortable relationship these characters have is often with their siblings who, by force of intimacy and affection, have learned to bridge the gap. Caitlin says of her brother that he "tells me what to say and what clothes to wear and how not to be weird so kids won't laugh at me. And he plays basketball with me." Although she may not read emotion well, she observes closely: "He always gives me a chance to win by tripping or moving slowly or going the wrong way when I do a fake. I can tell when he's doing something on purpose by looking at his mouth. His lips move a certain way when he's thinking. When he's being sneaky his lips move a different way. But when he's being sneaky he's doing it to be nice to me."

The books make arguments for inclusion or at least tolerance by acknowledging the tendency of kids to gang up on those who are different. The painful scenes of schoolyard conflict give readers ample opportunity to understand why recess could be the worst part of the day for some kids.

In "The London Eye Mystery," Ted finds a surprising confidant in his newfound cousin Salim. "I don't like being different," Ted tells him. "I don't like being in my brain. Sometimes it's like a big empty space where I'm all on my own. And there's nothing else, just me." Salim, a moody teenager, answers: "I know that place. I'm in there, too. It gets real lonely in there, doesn't it?" When Salim disappears while riding the enormous Ferris wheel, the London Eye, Ted and his sister track him down by doing a kind of detective work that Ted's logical brain is particularly suited for.

The mystery genre works well for these characters. Perhaps the first popular novel told from the point of view of an autistic character was Mark Haddon's multi-prize-winner, "The Curious Incident of the Dog in the Night-Time," in which an extremely intelligent and high-functioning young autistic man solves a murder. (OK, the murder is of a dog, but the book uses the detective story form, and the title refers to a Sherlock Holmes story.) The hero of "Marcelo in the Real World" by Francisco X. Stork (Arthur A. Levine Books/Scholastic: $17.99, ages 12 and up) is a young man entering his last year at his special school whose father challenges him to test his hard-won social skills in a real-world summer job. A mystery presents itself, which Marcelo, with his special powers of observation, is uniquely qualified to solve.

Detectives are allowed to be eccentric; indeed, it's often part of their success, both forensic and literary. (Think of all the beyond-quirky detectives on television shows, from "Columbo" to "Monk.") Some have suggested that Sherlock Holmes himself exhibits certain Asperger's qualities: a single-minded brilliance leaning heavily on an encyclopedic memory, a social abruptness and insensitivity that might be masked with a codified Victorian gentlemanliness. When Holmes needs to charm, he might simply be applying the kind of social rules that "on the spectrum" characters have drummed into them.

All these novels are worth reading just because they have fascinating characters. Readers might like to enter their minds at least in fiction, and who knows? Perhaps they'd be inspired to take a new look at some of their classmates. Surely some kids would be intrigued by Ted in "The London Eye Mystery," who can say of himself: "It's not that I'm sick . . . Or stupid . . . But I'm not normal, either. . . . It's like the brain is a computer. But mine works on a different operating system from other people's. And my wiring's different too."

For younger readers and families:

Ex-professional football quarterback Rodney Peete's family shares their story of discovering that one of their twins, R.J., is autistic. "Being twins doesn't make us exactly the same," R.J.'s sister Ryan observes in her children's picture book, "My Brother Charlie" (Scholastic: $16.99, ages 6-10), while the title of the father's book -- "Not My Boy!" (Hyperion, $24.99 ) -- says it all about what the family has learned about patience, acceptance, love and grace.

What about autistic adults? Here are some books worth looking into:

"Look Me in the Eye: My Life With Asperger's" by John Elder Robison (Three Rivers Press: $14.95). The author's Asperger's went undiagnosed until he was 40, by which time he had learned to deal with it through the cultivation of a number of fascinating and odd occupations. Robison made a brief appearance in his brother Augusten Burroughs' memoir, "Running With Scissors."

"Born On A Blue Day" by Daniel Tammet (Free Press: $15 paper). Inside the extraordinary mind of an autistic savant, like the character Dustin Hoffman played in "Rain Man."

"Episodes: My Life as I See It" by Blaze Ginsburg (Roaring Brook Press: $16.99 ages 12 and up). This memoir has its fans, although I find it entirely unreadable, perhaps because I fail to see the use of episodic television as a structure for making sense of life experiences.

"The Speed Of Dark" by Elizabeth Moon (Ballantine/Del Rey: $7.99 paper). Here's some science fiction about a company in the future that relies on the special abilities of autistic employees and about the moral implications of finding a cure for autism.

Sonja Bolle's "Word Play" column appears monthly at www.latimes.com/books.
Copyright © 2010, The Los Angeles Times

HHS, HUD Partner to Allow Rental Assistance to Support Independent Living for Non-Elderly Persons with Disabilities
$40 Million Available to Local Housing Agencies to Assist 5,300 Families

WASHINGTON--(BUSINESS WIRE)--Thousands of Americans with disabilities will have housing assistance specifically targeted to meet their needs, Health and Human Services (HHS) Secretary Kathleen Sebelius and Housing and Urban Development (HUD) Secretary Shaun Donovan announced today.

“This number of vouchers to this community is a major milestone for HUD”
.As part of President Obama’s Year of Community Living initiative, HHS and HUD collaborated to provide housing support for non-elderly persons with disabilities to live productive independent lives in their communities rather than in institutional settings.

HUD is offering approximately $40 million to public housing authorities across the country to fund approximately 5,300 Housing Choice Vouchers for non-elderly persons with disabilities, allowing them to live independently. HHS will use its network of state Medicaid agencies and local human service organizations to link eligible individuals and their families to local housing agencies who will administer voucher distribution.

“This number of vouchers to this community is a major milestone for HUD,” said Donovan. “I am pleased that two federal agencies have combined efforts to give these individuals the independence they so desperately want and deserve.”

“This commitment by HHS and HUD to directly link housing support to these individuals will be of immeasurable value not only to them, but to the communities in which they will be living,” said Sebelius. “Individuals with disabilities have so much to contribute to the quality of life in our communities when given the freedom and opportunity to do so.”

Of the 5,300 vouchers set aside as part of this program, up to 1,000 will be specifically targeted for non-elderly individuals with disabilities currently living in institutions but who could move into the community with assistance (Category II). The remaining 4,300 (Category I) can be used for this purpose also, but are targeted for use by non-elderly individuals with disabilities and their families in the community to allow them to access affordable housing that adequately meets their needs.

In addition, HUD is encouraging housing authorities to establish a selection preference to make some, or all, of their Category I allocation available to individuals with disabilities and their families who, without housing assistance, are at risk of institutionalization. Housing authorities have 90 days to submit their applications to HUD. HUD expects to have funding awards ready late fall 2010.

“Many of these individuals are low-income and can not afford market rates for housing. For a number of Americans, these vouchers, along with Medicaid home and community-based services, are essential supports that make the President’s vision for community living possible,” Sebelius noted.

The vouchers will augment work already being done by the Centers for Medicare and Medicaid Services (CMS) through its Medicaid Money Follows the Person (MFP) grant program. Originally set to expire next year, the “Patient Protection and Affordable Care Act of 2010” extended the MFP program through 2016 with an additional appropriation of over $2 billion. The Act also cut to three months, from the previous six months, the amount of time a person must be in an institution to qualify for help making the transition to community life.
Now in its third year, the MFP program has made it possible for almost 6,000 people to live more independent lives by providing necessary supports and services in the community. Some 29 states and the District of Columbia have MFP programs.

The Year of Community Living is an outgrowth of a 1999 Supreme Court decision in Olmstead v. L.C., in which the court ruled that under the Americans with Disabilities Act (ADA) unnecessarily institutionalizing a person with a disability who, with proper support, can live in the community can amount to discrimination. In its ruling, the Court said that institutionalization severely limits the person’s ability to interact with family and friends, to work and to make a life for him or herself.

As a result of the Olmstead ruling, HHS issued guidance to states on how to make their Medicaid programs more responsive to people living with disabilities who wish to reside in the least restrictive setting. Today’s announcement is yet another step in HHS’s 10-year effort to achieve that goal.

To read the full funding announcement, visit HUD’s Web site. More information about the Money Follows the Person program can be found at http://www.cms.hhs.gov/CommunityServices/20_MFP.asp

Understanding Autism in Adulthood

Neil S. Greenspan, Immunologist, Department of Pathology at the Case Western Reserve University School of Medicine
April 6, 2010 - Huffington Post   

Recently, a family friend updated my wife about her young adult son who has relatively high-functioning autism. His current situation is reasonably illustrative of the realities for many individuals with similar attributes. He lives alone, has no job, and limited social life. So while the media prefers to focus coverage on the sometimes surprising talents of particular individuals with autism, or of late, on whether the diagnosis of Asperger's Syndrome should be included within or kept distinct from the broader diagnosis of autism, the most fundamental problems confronting the vast majority of young, and even not-so-young, adults with autism-related disabilities are left unaddressed. Across a range of cognitive and communicative abilities, particular challenges arise, in relation to social life, employment, housing, and health care.

Social Life

By diagnostic definition, most individuals with autism have difficulties initiating, establishing or maintaining interpersonal relationships. Not surprisingly, therefore, many young adults with autism, whether they live with their parents or independently of their nuclear families, are socially isolated. Local agencies responsible for those with developmental disabilities typically provide little to no support for socialization or recreation. Unless an enterprising private citizen or group of such citizens (usually parents of an affected individual) steps forward, the social and recreational opportunities for adults with autism remain severely restricted. With modern tools of communication and the considerable energies of many parents, siblings, or other family members, the relevant government agencies could at least more effectively coordinate such efforts. Better yet would be some degree of tangible support.

Employment

While the present the employment picture is rather depressing for adolescents and young adults (and for many others) in general, it is especially so for individuals with autism. Employment prospects for young adults with autism are particularly problematic if one is talking about what are referred to as "competitive" positions, as opposed to jobs in sheltered workshops. For individuals with autism who are verbal and have substantial cognitive abilities, such sheltered jobs would be deathly boring and frustrating. Nevertheless, without the requisite social skills, obtaining any position commensurate with ability is extraordinarily difficult. I know of a young adult in my area with an undergraduate engineering degree from a major state university who has been unable to find any job after looking for close to three years.

Although some government agencies provide job coaches for young adults with autism, many job coaches are ineffective. I heard of one young adult with autism who has a competitive job, but his parents have had to pay for both a job coach and a job coach for the first job coach. The end result is that the parents pay more for the job coaching than their son earns. Government and private agencies devoted to assisting those with disabilities will need to develop more effective and creative approaches to finding and maintaining employment for this population if this picture is to improve.

Housing

Housing options for adults affected with autism-related conditions and who require some supervision or support are quite limited in most communities. The result is that many such individuals live in situations where their minimal needs are not met. There is probably no solution that will be equally suitable for all affected individuals, but an integrated campus with trained staff members, on-site meal service, and recreational facilities could do much to provide many adults coping with autism a higher quality of life: healthier food and better health care, more recreational opportunities, and greater access to the transportation necessary for employment. Another positive step would be a greater degree of financial reciprocity among states and counties so that individuals with unique companionship needs would have greater opportunity to find the most suitable co-residents.

Health Care

Once individuals with autism graduate from high school, their access to services and support programs declines substantially. In many localities, there may be numerous health care professionals who will treat those with autism, but there is in fact a paucity of physicians, psychologists, and other specialists who actually have useful skills and insights to offer, claims to the contrary notwithstanding. Furthermore, the characteristics widely associated with autism can hamper diagnosis for routine medical problems. I know of a young adult with autism whose acute appendicitis was transformed into chronic appendicitis after the appendix burst and re-sealed. This young adult had visited several physicians about abdominal pain but they failed to diagnose this routine but serious condition. Centers devoted to continuing and coordinated care for those with autism would represent a major advance over the current situation dominated by numerous unproductive visits to health care professionals and fragmented care even when the involved professionals are competent.

Current policies and practices usually condemn adults with autism to constricted lives of mostly sub-optimal choices. Progress on the core deficiencies identified above will have to be achieved if the majority of adults with autism are to have even a modest chance for reasonably fulfilling and productive lives. Continuation of the status quo will represent a moral as well as a policy failure, as warehousing should be for consumer goods, not people.

U.S. official critical of state's living center agreement
Justice Department's civil rights chief says fewer people with mental disabilities should be 'warehoused' by state.
By Corrie MacLaggan AMERICAN-STATESMAN STAFF

Updated: 10:03 a.m. Saturday, March 27, 2010

The U.S. Department of Justice's civil rights chief said Friday that an agreement with Texas on fixing state institutions for people with mental disabilities "falls short" on moving people out of the facilities.

"There are just so many people who are being warehoused in these institutions, and I think that's a tragedy," Thomas Perez , assistant attorney general for civil rights , said in an interview in Austin. He was in town to speak at a National Conference of State Legislatures redistricting law seminar.

Last June, the Justice Department and Texas entered into an agreement to improve health care and speed up investigations of abuse and neglect at the 13 facilities now known as state supported living centers. It was the culmination of a federal investigation that began in 2005 at the Lubbock facility after reports of abuse and neglect and later expanded to the other institutions.

Perez, an appointee of President Barack Obama, took office in October — months after the Texas deal was signed. It's not clear whether his objections — which signal a departure from what the Obama administration said at the time the deal was announced — could affect Texas. He said he inherited the agreement and needs "to respect that on a certain level." But now, he said, he'd like to implement far more aggressive agreements with states.

"The paradigm prior to our arrival was: 'Let's just make sure that the facilities are safe,'" he said. "The new paradigm is: 'Question No. 1 — What is your plan for moving eligible people into communities? Step two ... What is your plan for ensuring that the facilities are safe?"

Texas' philosophy, one state official said, "may be a little different."

"In Texas, we support choice," said Stephanie Goodman, a spokeswoman for the Health and Human Services Commission , referring to the options of living in institutions or smaller group homes or enrolling in state programs that help people with disabilities live at home.

Still, the state is committed to ensuring that the population of the institutions continues to decline, said Cecilia Fedorov , a spokeswoman of the Department of Aging and Disability Services. About 4,300 now live in the institutions, down from 5,428 in 2000.

Texas allows people who want to leave state supported living centers to skip over a waiting list for home-based programs, and last year the Legislature expanded the number of spots in home-based programs available to living center residents.

"We need to be doing everything we can to make successful transitions for people who wish to move," Fedorov said.

Perez said that an ideal agreement would have specific numbers of people that the state should move out and timelines of when that should happen.

The Texas agreement requires the state to identify people who want to move out of the institutions, help them make that transition, and make sure their needs are met in their new setting, Fedorov said. But there are no specific numbers on how many people should move out.

Without those specifics, said state Rep. Elliott Naishtat , D-Austin, a member of the House Committee on Human Services, "what we're dealing with is wishful thinking at best."

At the time the agreement was signed, U.S. Attorney General Eric Holder praised it.

"The Justice Department is committed to protecting the fundamental rights of all our citizens," Holder said in a June 2009 press release. "This agreement reflects that principle by protecting the civil rights of some of Texas's most vulnerable residents."

In the 1990s, Texas closed two state institutions as part of a lawsuit settlement. Later, the state considered closing more, but after heated hearings, decided not to.

Susan Payne of College Station, whose sister, Diane Ward , lives at Denton State Supported Living Center, said she finds it "very offensive" that Perez would say people are being "warehoused."

"Family members of people who live at the state supported living centers are very, very aware of the options in the community, and the families have chosen this as the best setting," Payne said.

But Perez said that moving people out of institutions is long overdue.

"It's a heck of a lot easier to have everybody in one setting," he said. "But ease should never trump what is right, and what is constitutional."
cmaclaggan@statesman.com; 445-3548

Down syndrome: What We’ve Learned From Sam
Thomas Haskins, Times-Dispatch Columnist
Published: April 4, 2010

As a result of raising a son born with Down Syndrome, I discovered something: Children with special needs are a special blessing to society.

My wife and I were stunned when we were told that Sam was born with mental retardation. I had no experience with persons with disabilities. The prognosis for what Sam could and would be able to achieve was very limited, according to our doctor.

We were told to consider institutionalization; but that option was immediately rejected. Instead, we jumped on the mainstreaming bandwagon.

My wife and I resolved to provide Sam with the best medical treatment and overall quality of life possible. Wherever we went and whatever we did, he would go with us.

Fortunately, we were promptly referred to the Greater Richmond ARC (formerly the Association for Retarded Citizens), where Sam obtained important medical services, mastered critical skills needed in daily living activities, and established lifelong friendships.

Since Sam cannot live independently or support himself, it is our lifetime responsibility to provide for him in terms of his care and quality of life. But we are richer for the experience.

What we discovered is how much Sam gives to us. His life has a purpose; it is important and meaningful.

Sam simply makes our lives better. He slows things down. Our family, like most, lives in the fast lane. My wife and I both had professional careers. We are busy.

Sam has two younger siblings who also demanded attention. They are busy. Sam walks slowly; he eats slowly. He is not in a hurry. He gives us perspective. We learned to be patient.

Certainly there were and are difficult days. I know his brother and sister chafed at some of the restrictions our family experienced in caring for a loved one with intellectual disabilities. When you have a family member with special needs, it affects the entire household.

Sam can be unpredictable. He can react inappropriately in certain situations. We learned that embarrassment is not fatal. And that months later, we can all laugh about an incident that we did not find funny at the time.

I also know that Sam's siblings are better for the experience. Growing up in our family, they developed compassion quickly. They tend to look at things differently, too.

Sam abhors violence. He won't watch The Three Stooges because they hit each other. In a society where movies and television shows have to be rated for violence, that's refreshing.

Sam is generous. If he has money, he wants to buy you lunch. If you admire his hat or sports jersey, he will give it to you.

Sam's feelings are authentic. Sam is always ready and willing to give a smile or hug -- to relative, friend, or stranger.

I've seen from coaching Special Olympics that even on my most miserable or selfish of days, children and adults with intellectual disabilities literally force you to love -- and to acknowledge or reciprocate their affection. Relationships with them are honest.

Many times I resist coaching Special Olympics swimming -- until I get there. Then, for the next hour, Sam and the other swimmers and I laugh and bond and have a great time. I walk out knowing that I would much rather have spent the afternoon with those folks than with many other people I know.

I would not be the same person I am today without Sam. And I would not be the same person I am today without the support we experienced in our community.

Children with substantial intellectual disabilities are dependent their entire life. They do not drive, most do not read, and they do not cook. Caregivers are required to constantly think of someone other than themselves. It teaches you to love.

Even if you are not a caregiver or don't experience these circumstances, you can play a part. Get involved. Support the Special Olympics or the Greater Richmond ARC's upcoming Ladybug fundraiser on May 1 that generates scholarships for families in need of infant and child services.

Attention, local businesses: You can help by providing work for individuals with intellectual disabilities.

The Greater Richmond ARC's Industrial Services has a program where adults with intellectual disabilities can spend their day in meaningful activities and earn a paycheck, as well.

Sam worked at the ARC for seven years after completing high school. Sam has now moved on from that experience by his choice and that is my current challenge. He is at home, waiting for the next chapter in his life.

Consider volunteering. Lend an ear when a caregiver needs to talk. Things aren't the same as they were 30 years ago when family members were the sole caregivers. There is strong support in our community for our loved ones with intellectual disabilities. I see it in my volunteer work. And, I see it firsthand where we live: Everyone recognizes Sam and speaks to him. Many times these are people that I don't know.

Embrace the Sams of the world. Here is what I learned from them: compassion; patience; courage; trust; gentleness; humility; love.

The love is unconditional.

Thomas G. Haskins is a member of the board of directors for The Greater Richmond ARC (http://www.richmondarc.org) and formerly served on the Special Education Advisory Committee to the Henrico County School Board. He was also a former officer and director for the Down's Syndrome Association of Greater Richmond.

Mary Etta Lane, a long time leader and member of NCE, died on April 1 after several years of battling cancer.  In the 1970s, she served as the Assistant Executive Director of The Arc of Illinois.  She then moved on to Iowa, where she served for more than a decade as the Executive Director of The Arc of Iowa.  More recently, she worked for a developmental disabilities provider agency in Missouri.

Mary Etta served as the President of NCE in 1980s.  While in Iowa, she developed a very close relationship with U.S. Senator Tom Harkin, who became and still is a foremost champion of disability rights and supports.  A tireless and forceful advocate for children and adults with intellectual disabilities, she was instrumental in the development of many home and community based services wherever she worked.

Memorial services and burial are being planned for Saturday, April 10 in Kansas City.
 

World Autism Awareness Day is April 2, 2010

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and  impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.

Parents, one with intellectual disability, fight for family
Ann McGlynn | Posted: Sunday, March 28, 2010 1:45 am
Quad City Times

The last time Andy and Kandi Kunde saw their two oldest children was the day before Thanksgiving.

The next time the Maquoketa, Iowa, couple see them will be to do one of two things: start the process of welcoming them back home or to tell the 8- and 9-year-olds goodbye forever.

The Kundes — Kandi is categorized as mentally retarded, or intellectually disabled — already agreed to have their two youngest children taken away by the state. Now they are battling to keep their oldest.

All of the couple’s children have behavioral problems and are diagnosed as mentally retarded, court records state.

“We made mistakes,” Kandi Kunde said. “We know how to parent our kids now. We love our children, no matter what happens. There’s a strong bond.”

Their case began five years ago, when social workers found the family living in deplorable conditions. It continues today after an intensive series of interventions. State workers, attorneys and judges disagree about who should raise two children who may be difficult to adopt out.

The Iowa Court of Appeals, in a split decision, last week upheld the decision of Associate District Judge Arlen Van Zee terminating the Kundes’ parental rights to their oldest children. One of the three judges who heard the case dissented, and the Kundes’ attorney will be asking the Iowa Supreme Court for review.

“They are not bad people. They might not live in a place where you or I might live. And they might not do how you and I might do. But they sure love their kids,” said attorney Stephen Newport. They are also much better parents than they were five years ago, he said. “There are a lot of things these people have done to take advantage of services and then they get slapped in the face.”

The spokesman for the Iowa Attorney General’s office declined comment. The Iowa Department of Human Services could not be reached for comment.

The case

The Kundes first came to the attention of the Iowa Department of Human Services in February 2005. Social workers received a report that the family’s home had garbage on the floors, a kitchen full of dishes with spoiled food, no bathing facilities and a broken hot water heater and toilet.

Five months later, officials found the children were kept in their yard by an electric fence.

In January 2006, a judge approved an unspecified DHS plan for the family and ordered that the children remain with the parents. The family received unspecified services. In August 2006, the state filed a report of abuse after one of the children had a cigarette burn on his thigh. Then in December 2007, officials filed another report after the dad bit one of the children on the arm.

In April 2008, a judge ordered all four children removed from the home and placed into foster care.

The judge noted that the family survived on the children’s government disability payments, that workers went to the family’s home twice a week to bathe the children and that the mom is “unable to manage the children” and the dad “manages them by fear and intimidation.”

“At this time, there are four young, vulnerable special-needs children that live in a home where the parents have not demonstrated that they have the ability to meet minimal standards of cleanliness, nurturing and structure, even with the support of the (department) and the various service providers,” the court said.

The court reviewed the children’s placement in October 2008. The state recommended the two oldest children be returned to the Kundes’ care, despite reservations by social workers and the attorney representing the children, known as a guardian ad litem.

Problems arose immediately, documents say. One of the children, then 6, had a knife in his bedroom and cut a teddy bear and his bed. The parents also allowed a family member who was a registered sex offender into their home during supervised visits. The children’s academic scores went down, and they were eating pencils at school. One child’s hygiene also began to deteriorate.

The two oldest were again removed from the Kundes’ care in January 2009 and placed in foster care. In May 2009, the Kundes lost their parental rights to the two youngest children.

“They did not contest the termination, and it was the hopes of the parties that the parents would be able to safely parent the two older children,” court documents say. The state continued to provide assistance to the family and visitation continued with the two oldest children.

The state filed a petition to terminate the Kundes’ parental rights to the two oldest children in September 2009. The court held a hearing in November.

Three people testified the children should be permanently removed, including the state social worker, the family’s service provider and the state-appointed special advocate. The children’s guardian ad litem testified the children should stay.

The state social worker testified “there was no question that the parents loved the children, but they were not capable of caring appropriately for their children on an ongoing basis. The worker acknowledged that the parents’ hygiene had improved and was not an additional concern at the time of the hearing. Additionally, the worker testified that she had seen some improvements in the father’s care after the parents’ rights to the younger children were terminated.

“The worker testified that based on the history of the case, she did not believe the parents could succeed at unsupervised visitation,” court documents say. “She believed the parents needed ongoing guidance to maintain a clean home and that safety could not be established without lifetime services.”

The guardian ad litem, Stuart Hoover of Dubuque, Iowa, testified he believed the children were not adoptable and “the parents’ home and the parents’ level of caring for the children was adequate.”

He “conceded that he believed if the children were returned to the parents’ care, services would have to continue to be offered for life or until the children turned 18,” court documents say. “But he opined that services would have to continue for the parents and children regardless, due to the mother and the children’s limited mental abilities.”

The children’s prospects, he said, were worse with termination than without.

“With their parents they will at least be with people who actually want and love them,” Hoover testified. “I believe the parents are able to meet the basic needs of these children. Given that I think it would be inappropriate to relegate these children to a succession of foster parents.”

The court terminated their parental rights, saying that while they had shown a “willingness to respond” and a “cooperative spirit,” their ability to respond is the issue.

The Iowa Court of Appeals upheld the termination last week.

“There was simply no evidence the children could safely be returned to the parents’ care at the time of the termination hearing and additional time would not result in the parents being prepared to safely parent the children,” the ruling, supported by two judges, said.

Furthermore, the court must not find that the children are adoptable before terminating parental rights, the court wrote. The termination “best provides for the children’s safety, long-term growth, and physical, mental and emotional needs,” the court concluded.

However, Chief Judge Rosemary Shaw Sackett dissented. “I am not sure the services offered were tailored to the parents’ abilities.” She wanted “efforts to be made to give them the assistance they need.”

History, future

Peter Berns, the chief executive officer of The Arc of the United States, said there is “ample evidence” that people with intellectual disabilities can be successful parents if they have the right support.

“The big question in a case like this ... is were the parents provided with appropriate supports that potentially could have kept that family together,” he said.

Parenting support is the same thing as support for employment, education or daily living, he noted.

The history of parents with intellectual disabilities is not a good one, he said. For years, people were sterilized or immediately had their children taken away.

“There is a dark past in this subject area,” Berns said.

In this case, the court appeared to be “focusing on the functional issues and the welfare of the children. That’s the question that’s lurking behind all of this. Were they making assumptions about what was possible for this family because of one of the parents have an intellectual disability?” Berns said.

The Kundes do not know what happened to their youngest children.

They have beds and toys and clothes awaiting the return of their oldest two. The couple lives in an apartment and have more income than they did before. Their children’s pictures are hanging on the walls.

“My children are just the world to me,” Kandi Kunde said.

Newport, the Kundes’ attorney, believes “our emphasis has to be on keeping families together, not tearing them apart.”

“Here we have a family who wants to be a family, and what do we do? We terminate anyway,” he said.

Letter: Labels affect the attitudes we hold
March 31, 2010 02:18 am - The Eagle Tribune

To the editor:

I would like to respond to Taylor Armerding's column about attitudes and words, in particular how a label used in the formally named Department of Mental Retardation impacted services.

My involvement in the name change was not just about making people with mental retardation feel better about themselves. Far more importantly, it was about changing the attitudes and perceptions held by the general public and well-meaning support providers about individuals with mental retardation.

Eliminating the labeling in the department's name was a necessary first step to change how and where we support people. How you label things greatly affects the way you look at them. Kinky Friedman, singer-songwriter, author, and now politician, commented after a stay in a hospital: "Once I became a patient, I ceased being a person." The doctors and nurses were all well-meaning, but they were only treating the condition he was afflicted with and they lost sight of him as an individual.

Now imagine the impact of a lifelong condition labeled in such a way that caused people to focus only on your disability rather than your abilities.

In our pursuit of establishing support systems, it is easy to understand how we might lose sight of the individual if we base programs and supports solely on labels. However well intended, programming based on labels tend to congregate, segregate and control by design.

People developmental disabilities want and need the same things that everyone else wants and needs; meaningful relationships, meaningful activities, being valued and community inclusion; A life like any other a life that gains its joy as an active participant in an inclusive world. Most important of all, they want to be afforded the same rights of choice and control over their lives, just like everyone else.

People with developmental disabilities may need support for many aspects of their lives; the need for support, however should not nullify the right to community inclusion and to make decisions about how and where to live and how and where to be supported.

There are many alternative supports that facilitate inclusion, choice and control, while still meeting the individual needs of the person who required support. Individual Service Options, Family Partnerships, Shared Living, are a few types of supports that make community inclusion easier to accomplish and puts choice and control in the hands of the individual.

Commissioner Elin Howe, and her newly named agency is moving in the right direction, but in order to be successful, inclusion and choice, not labels for those with developmental disabilities, must be embraced by all.

Now, here is the best news of all. On average, the non-labeled individualized community and inclusive supports cost far less than conventional supports. In light of current and future budget concerns, there could not be a better time to change attitudes and actions.

Change the way you look at things, and the things that you look at will change.

Buddy Bostick
Newburyport
Copyright © 1999-2010 cnhi, inc.

President Obama Signs Health Care & Education Affordability Reconciliation Act into Law

(March 30, 2010) Today President Obama signed the Health Care and Education Affordability Reconciliation Act into law in a ceremony at Northern Virginia Community College (Alexandria campus.) Dr. Jill Biden, an English professor at the college, introduced the President.

Liz Savage, Director of Health Policy for The Arc and United Cerebral Palsy's Disability Policy Collaboration, attended the historic ceremony.

"This law, coupled with the Patient Protection and Affordable Care Act which President Obama signed last week, will dramatically improve disability related health care and long term services and supports," according to Ms. Savage.

"These laws represent a sea change in access to quality, affordable health care for people with disabilities", she added.

700 'March for Respect' with Arc of Tri-Cities
By Michelle Dupler, Herald staff writer

About 700 people gathered in Richland's John Dam Plaza on Saturday to honor people with developmental disabilities and make others aware that they're a valuable part of the community.

The third annual "March for Respect" event was organized by The Arc of Tri-Cities and included a walk around the plaza as people with disabilities, advocates, parents and friends held signs and smiled proudly as they proclaimed they're just like everyone else.

"We are not any different," said Michelle Homewood, an Arc member for 22 years, longtime Special Olympics athlete, and mother of a 17-year-old girl with disabilities. "We may learn a little differently, but we're all human and we need the same attention everyone else gets."

The event was intended not only for Arc clients to stand up and be heard, but for the community to gather and show its support. Local luminaries in attendance included Richland Mayor pro tem Ed Revell, Sen. Jerome Delvin, R-Richland, and his wife, Benton County Clerk Josie Delvin.

The Delvins long have been supporters of The Arc and are helping to raise money for a new building that will house expanded programs. Jerome Delvin is the host each year for an Arc trip to Olympia, where the agency's clients, staff and volunteers can tell lawmakers about the issues important to them.

At the top of their list each year is the freedom to make choices about their own lives and the opportunity to have jobs and be as productive as anyone else.

That means convincing the Legislature to pay for services that help people with disabilities live independently and work in their communities.

"Sometimes we don't seem to get the services we need," Homewood said.

Jerome Delvin said he participated in the walk Saturday because he wants to help make the community aware that people with disabilities needn't be limited by them.

"They are part of our community," he said. "They are productive members of our community."

Donna Tracey, The Arc's advocacy manager, said the event also was about thanking the Tri-City community for welcoming people with disabilities.

"We have a variety of individuals with disabilities in our community -- people with hearing impairments, visual impairments, developmental disabilities -- just a gamut," Tracey said.

Homewood said for her the day was about celebrating friendships she's made through The Arc.

"When you get involved in something like The Arc you develop friendships you wouldn't think possible," she said. "You gain knowledge. You gain respect. You gain love."
-- Michelle Dupler: 582-1543; mdupler@tricityherald.com

Read more: http://www.tri-cityherald.com/2010/03/28/956709/700-march-for-respect-with-arc.html#ixzz0jg6pYy7p

New health care law will take financial load off schools, observers say

Families that include children with disabilities will benefit from the new health care bill that President Obama signed into law March 23, observers say.

For example, the law will prevent insurance companies from setting lifetime caps on benefits, effective in six months. It will also prevent such companies from denying coverage to people with preexisting conditions, effective in 2014. Originally, House Speaker Nancy Pelosi's office said the latter provision would become effective in six months for children, but at press time, it appeared that might not be the case.

It also lets parents keep their children on their policies until they turn 26 and makes more families eligible for Medicaid.

But schools also stand to gain from the measure, according to Kathleen Cummins Merry, head of Medicaid reimbursement for the Wayne County (Mich.) Regional Education Service Agency.

"More children will be eligible for Medicaid coverage, which means that schools will be able to seek partial payment for the medical services given to these children in our classrooms; increased numbers of students should mean increased revenue for our schools," she said in an e-mail.

Michigan is particularly well placed to benefit from the new law because it provides special education until children turn 26, if needed, Merry noted.

"One could only hope that our school programs will [now] be able to be reimbursed for the medical services we do provide to those older students," she said.

Reducing the child count

Section 504 coordinators, meanwhile, will rest easier knowing that their students are more likely to get whatever care they need, according to Katy Beh Neas, government relations director for Easter Seals and co-chair of the Education Task Force of the Consortium for Citizens with Disabilities.

For example, the law will make it easier to get care for "a kid, maybe with a physical disability, like cerebral palsy, where they didn't have any special ed needs, but they might need physical therapy," she said.

In fact, the easier it is for children to get health care, the less likely it is that they'll need special education, according to Paul Marchand, staff director for the Disability Policy Collaboration.

"Providing appropriate health care at the earliest possible age will ameliorate some disabilities or potential disabilities or will prevent secondary disabilities from occurring," he said. "That's going to be a huge boon for schools."

The special ed population also will drop if more women receive prenatal care, according to Janis Guerney, public policy codirector at Family Voices.

"It should help because there will be hopefully fewer people with premature births, which lead to disabilities and so forth," she said.

Defraying costs

It also is conceivable that schools could use private insurance to cover certain IDEA Part B services once the caps on lifetime benefits are lifted, according to John Hill, government affairs chair for the National Alliance for Medicaid in Education and Medicaid liaison for the Indiana Education Department.

Hill emphasized that he was speaking for the alliance, not the state.

Caps matter, Hill said, because Part B services must be free, and a school that tapped a family's private insurance would effectively "use up" its lifetime cap even if the school picked up all insurance-related expenses, such as copays and deductibles.

In contrast, Part C is by law the "payor of last resort," meaning administrators must first exhaust all other sources of funds, including a family's private insurance.

"If those caps are done away with, then I think there will be schools that choose to reinvestigate billing private insurance for those services that are on the IEP," Hill said.

Hill has a point, according to Greg Morris, executive director of LEAnet, a consortium of school health officials.

"It is more likely that schools could find themselves billing private insurance" for Part B services under the new law, he said.

In fact, he says, Section 300.154(d)(f)(2) of the Part B rules says states can tap a family's private insurance, if the family consents.

In that case, the rules state, the district can pay any expenses the family would otherwise incur.

"To avoid financial cost to the parents who otherwise would consent to use private insurance, or public benefits or insurance if the parents would incur a cost," the rules state, "the public agency may use its Part B funds to pay the cost that the parents would otherwise have to pay to use the parent's benefits or insurance (e.g. the deductable or co-pay amounts)."

Special Ed Connection® related story:
· Education groups urge passage of reconciliation bill (March 23)
Mark W. Sherman, a Washington bureau correspondent, covers special education issues for LRP Publications.

March 23, 2010 Copyright 2010© LRP Publications

RI House votes to remove 'retardation' in dept name
News Date: 03/24/2010
Associated Press (AP) - Providence Bureau

PROVIDENCE, R.I._House lawmakers unanimously voted Wednesday to remove the word "retardation" from the name of the state Department of Mental Health, Retardation, and Hospitals.

The bill, which passed on a vote of 67-0 in the House, would change the name to the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. The bill must still be passed by the Senate.

The Special Olympics last year launched a campaign to banish the word "retard." The term "mental retardation" was once a common medical term but is now considered by many to be offensive. Instead, the American Psychiatric Association has proposed using the term "intellectual disability."

Rep. Frank Ferri, D-Warwick, and Rep. Joseph McNamara, who co-sponsored the bill, on Wednesday recognized the work of supporters who pushed to remove the term from the department's name, including the head of the agency, Craig Stenning. Stenning said this month he had met with representatives of the Special Olympics and Best Buddies, a group that works people with intellectual and developmental disabilities, about making the change.
"Its time has come. I know there's a national effort to take the 'R word' out, and I'm proud to be a part of that," Ferri said on the House floor shortly before the vote.
Republican Gov. Don Carcieri, whose late sister had Down Syndrome, also said this month he supports the change.

Rhode Island is just the latest state to take up the issue. Others include Connecticut and Massachusetts, which have removed the term "retardation" from state agency names, and West Virginia and Idaho, where lawmakers are considering removing the term "mental retardation" from state law books.

Copyright © 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Disturbing findings in wake of 'fight club'
By TERRI LANGFORD
Copyright 2010 Houston Chronicle, March 22, 2010, 10:24PM

Criminal fingerprint checks show at least 36 employees continued to work on the state payroll while caring for the mentally disabled — despite being arrested for felonies ranging from indecent exposure, to aggravated assault, child rape and murder.

Of those 36 with arrests, 17 had felony convictions and the remaining 19 still face trial, according to Texas Department of Aging and Disability Services records released to the Houston Chronicle Monday.

The release of the records, first requested six weeks ago, came on the eve of a House committee meeting Tuesday in which lawmakers will discuss for the first time what improvements have been made regarding care at the facilities in the wake of last year's shocking “fight club” incident in Corpus Christi.

While that's less than one percent of the 11,785 DADS employees who were fingerprinted and work at 13 State-Supported Living Centers, formerly known as state schools, the newest reform shows how pre-employment criminal background screens failed to alert the state to employees with criminal records.

Current pre-employment screening only checks for convictions in Texas. The fingerprint checks linked employees to convictions and arrests outside of Texas. Of the 17 with convictions, 13 have been terminated or resigned. The other four are still in “process” according to the agency, which released the numbers without comment.

“Of course it still matters. That amount of people has control over a handful of residents who are unable to communicate abuse or neglect or ward off that type of aggression,” said Beth Mitchell, senior managing attorney for Advocacy Inc., a group that has fought for better care of the mentally disabled in Texas. “You don't want someone like that corrupting other staff. That's what we saw in Corpus Christi. It only took one staff to corrupt a group of staff in the fight club.”

Cell phone fight videos
The incident, at what has now been renamed Corpus Christi State-Supported Living Center, was discovered by police a year ago when a lost cell phone had videos of mentally disabled residents fighting. Voices of the residents' state caretakers could be heard encouraging the residents to fight one another. Since then, four former DADS workers have been convicted as a result.

The fingerprint checks and another new reform, random drug testing — which snared 23 DADS employees who tested positive for drug use — are the only significant progress seen in the year since the cell phone video surfaced and since DADS entered into a settlement late last year with the U.S. Department of Justice.

A “baseline” report on the Corpus Christi facility, the first of 13 to be conducted on each center as part of that DOJ agreement, shows little has been done since the fight club scandal put Texas' care of the mentally disabled in the spotlight.

While the March 10 monitoring report of Corpus Christi State-Supported Living Center revealed “a number of good practices in place,” it also noted “a number of the areas in which there is a need for improvement.”

For example, in the past year, the state has yet to establish a “zero tolerance” of abuse at Corpus Christi, there are no full-time psychiatrists on staff in the Corpus facility and no standard diagnostic procedure in place for residents with psychiatric problems.

“It's pretty clear from the report that they're really far behind in meeting the criteria of the DOJ settlement,” Mitchell said.

Also, the DADS staff in Corpus has not come up with better ways to monitor the physical and nutritional needs of their residents and are not able to pinpoint those residents who are at-risk of abuse.

“The Facility is at the very beginning stages of implementing the process of screening individuals to determine if they fall into an at-risk category,” the report stated.

Documentation problems
In many areas, the monitors noted the Corpus Christi facility failed to keep proper documentation on residents. Dental care records were missing, as was proof that staff reviewed some residents' medication and allergies. The current forms being used at the Corpus Christi center failed to document residents' vocational strengths, needs or preferences.

A spokeswoman for state Rep. Patrick Rose, D-Dripping Springs, the chair of the House Committee on Human Services, said Rose would not be making any comments about the report until Tuesday's meeting. Calls to other members, including state Rep. Abel Herrero, the committee's vice chair, were not returned.
terri.langford@chron.com

Washington, D.C. (March 22, 2010) - Press Release

The Arc Applauds House Passage of Health Care Reform Legislation

The Arc of the United States applauds the House of Representative’s passage of the historic health care reform legislation that is certain to rank among the top domestic legislative achievements of this generation.  “This legislation will bring about comprehensive health care reform that will benefit nearly all Americans while reducing the federal deficit.  We are extremely pleased that the House- and Senate-passed Patient Protection and Affordable Health Care Act contains numerous provisions of importance to people with intellectual and developmental disabilities,” said Peter V. Berns, CEO of The Arc.

Provisions include: 

Coverage

• Prohibiting private health insurance exclusions for pre-existing conditions.
• Eliminating annual and lifetime caps in private insurance policies.
• Restricting the consideration of health status in setting premiums.
• Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).

Benefits

• Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.
Access to Quality Care
• Improving training of physicians, dentists and allied health professionals on how to treat persons with disabilities.
• Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities, access to primary care services and the level to which primary care service providers have been trained on disability issues.
• Ensuring prevention programs include a focus on individuals with disabilities.

Long-Term Services and Supports

• Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community-based services (HCBS) and during periods of economic downturn.
• Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.
• Providing spousal impoverishment protections for HCBS beneficiaries.
• Strengthening long-term services and supports through a two-pronged approach:

1) Taking pressure off of the Medicaid program:  The Community Living Assistance Services and Supports (CLASS) Act would create a national long-term services insurance program, which assists eligible individuals and their families to meet long-term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.
2) Improving the Medicaid program:  The Community First Choice Option would help to eliminate the institutional bias by encouraging states to cover personal attendant services under the state’s optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.

Cindy Johnson, Chair of the Public Policy Committee of The Arc and a member of its national board said, “People with disabilities—especially young people—can look to a future free from the discrimination of being denied coverage due to preexisting conditions.”  Johnson, who is a parent and a sibling to individuals with disabilities, added “this legislation is a relief for families and represents the hope we have that our needs will be met.  We are grateful to the advocates and the legislators who fought to have these provisions included.”

The Arc greatly looks forward to President Obama’s expected signing of the Patient Protection and Affordable Care Act (H.R.3590) into law early this week.  Enactment of this landmark law will result in the attainment of several of The Arc’s priority public policy goals.  “We are hopeful that the subsequent consideration by the Senate this week of the Reconciliation Act of 2010 (H.R. 48772) will also be successful, resulting in fundamental and lasting improvements to the Nation’s health care system,” Berns said.

The Arc urges families with individuals with disabilities to call their congressional representatives who supported this legislation and thank them.  To learn more about the impact of health care reform and other legislative priorities impacting people with intellectual and developmental disabilities, register for the Disability Policy Seminar (www.disabilitypolicyseminar.org) from April 12-14, 2010, in Washington, D.C.

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New hope for Illinois’ mentally ill nursing-home residents
Settlement is called historic and could send 4,500 into community-based programs
By David Jackson and Gary Marx, Tribune reporters
March 15, 2010

Thousands of psychiatric patients are likely to move out of nursing homes and into community-based settings in the next five years under a landmark legal agreement designed to reshape Illinois' troubled long-term care system.

The agreement, expected to be filed Monday in federal court in Chicago, lays out a schedule for state officials to offer approximately 4,500 mentally ill nursing home residents the choice to move out of two dozen large facilities known as "institutions for mental diseases," or IMDs, and into smaller settings that experts say are more appropriate and less expensive.

"This is a momentous day for people with disabilities in Illinois," said Benjamin Wolf, associate legal director for the ACLU of Illinois, which filed a lawsuit in 2005 that led to the agreement. "It is the beginning of transforming a system that has been focused on institutionalizing people for decades into one that actually delivers what people want and need."

More than any other state, Illinois relies on nursing facilities to house younger adults with mental illness, including thousands with felony records. A recent Tribune investigation detailed numerous reports of sexual assault, violence and drug abuse in some facilities where psychiatric patients got little treatment or supervision. Some of the homes failed to create adequate programs or discharge plans for residents who milled about or watched TV in dreary common areas.

One of the state's most troubled IMDs, Somerset Place in Uptown, was shuttered Friday after Tribune reports and state and federal inspections documented a pattern of abuse, violence and substandard care.

The ACLU sued Illinois for reform, citing a 1999 U.S. Supreme Court ruling known as the Olmstead decision that requires states to place patients in the least restrictive setting appropriate to their disability.

Settling that lawsuit was considered critical to 38 proposals recently introduced by Gov. Pat Quinn's Nursing Home Safety Task Force, formed in reaction to the Tribune's investigation. Chairman Michael Gelder said a settlement would bring federal court oversight to Quinn's push for alternative treatment and housing options for psychiatric patients.

The panel's proposals also were designed to make facilities safer for elderly and disabled residents. State lawmakers are negotiating with industry representatives and advocates to transform the recommendations into law this spring.

While Monday's settlement covers only residents of the IMDs, there are at least 10,000 other mentally ill people living among elderly and disabled residents in other nursing homes that are not classified as IMDs.

In a statement, Gelder said, "several thousand new units of supportive housing will be identified in partnership with community providers over the next five years to serve those who no longer wish to receive care in such nursing homes. This commitment can be fulfilled, even in this severe recession, by receiving significant federal financial support for care in the community."

Another advocate, Mark Heyrman, a University of Chicago Law School professor and chair of public policy for Mental Health America of Illinois, said it was "a very happy day for everyone who cares about persons with mental illnesses in Illinois. Many years ago the state embarked upon an ill-conceived policy of placing thousands of our most vulnerable citizens in nursing homes where they received little care and little effort was made to help them recover. ... Hundreds of millions of tax dollars have been wasted. This settlement marks the beginning of the end of this tragedy."

Under the settlement, every resident of an IMD will be evaluated to determine whether he or she is eligible to be moved into a less-restrictive setting, and what is needed to thrive there. The evaluation is voluntary, and residents can decline to take part and remain where they are.

All 4,500 IMD residents would be evaluated within two years, and then annually after that. The settlement outlines a strict timetable for moving those who want to leave the IMD -- slowly for the first two years, then more rapidly as the state builds its capacity for serving and treating people in communities.

The former nursing home residents will be placed in so-called supportive housing — subsidized apartments or group homes where staff are on-site or visit frequently to provide therapy, job and life-skills training, substance-abuse programs and case management.

State officials made a commitment to provide adequate therapeutic, vocational and life-skills programs to support the former IMD residents as they transition into communities. The court will appoint a mental health expert to independently monitor the state's compliance with the agreement.

"The main thing is to have someone who has independence and expertise," said Wolf's co-counsel Barry Taylor, legal advocacy director at Equip for Equality.

The lawsuit's plaintiffs contend the agreement will be less costly than the state paying for housing people in IMDs. The state also will be eligible to receive federal Medicaid reimbursements for medications and health care that the former residents receive in a community-based setting. Ed Mullen, managing attorney for community integration at Access Living, said the state could save more than $50 million over the next few years.

The papers expected to be filed Monday ask U.S. District Judge William Hart, who is overseeing the case, to schedule a "fairness hearing" to consider the specifics of the plan. There will be a period of at least two months in which interested parties can file objections, Wolf said.

In reaching the settlement, the state denied violating the Americans with Disabilities Act and other laws that protect people with disabilities.

Tony Zipple, head of the community mental health provider Thresholds, called Monday's settlement a "historic moment for public mental health in Illinois. This is probably the single best opportunity in 10, 20 years to really do systemwide reform and not have people relegated to nursing homes."
Copyright © 2010, Chicago Tribune

Vaccines Could not Have Caused Autism, U.S. Court Says
Submitted by Amit Pathania on Tue, 03/16/2010 - 11:10 FeaturedHealthTNM

On Friday, a court said that vaccines containing preservative called thimerosal, could not have caused autism, but parents believed that vaccine is the main cause of illness in their children.

The special U. S. Court of Federal Claims revealed that they did not find any evidence that vaccines have caused autism in three cases.

The court ruling was against three families who believed that vaccines caused autism in their children in February 2009. The court said that they have been "misled by physicians who are guilty, in my view, of gross medical misjudgment”.

Around 5,300 cases have been registered by parents who blamed vaccines for the disorder in their children.

Autism is a disorder of neural development that affects around one in 110 U. S. children and there is no therapy to cure the disease.

The U. S. Institute of Medicine has revealed that there is no relationship between vaccines and autism.

"It's time to move forward and look for the real causes of autism. There is not a bottomless pit of money with which to fund autism science. We have to use our scarce resources wisely”, said Alison Singer, President of the Autism Science Foundation. 

Putting spotlight on former Willowbrook State School
By Judy L. Randall
March 15, 2010, 7:30AM

New York is showcasing a new Web site about the former Willowbrook State School.STATEN ISLAND, N.Y. -- Nearly four decades after Willowbrook State School was mandated shut by the state for the warehousing and inhumane treatment of developmentally disabled children and adults, New York is showcasing a new Web site about the infamous place amid questions about its timing.

A spokeswoman for the state's Office of Mental Retardation and Developmental Disabilities (OMRDD) said its launch of the site last week is not linked to the 38-year-old class action lawsuit, which is still in the courts, brought on behalf of the 6,000 people living at the sprawling facility on March 17, 1972 when the suit was filed.

However, the site was designed by OMRDD's Litigation Support Services.

Nicole Weinstein said the "Beyond Willowbrook" section of OMRDD's Web site "is part of an effort to reach out to those who are serving Willowbrook class members," as service providers and case workers, but would not address questions of, why now?

She said there about 3,000 members of the Willowbrook "class" of '72 still living in New York.

The class action landmark suit, brought by the New York Civil Liberties Union against the state, was instigated prior to the 1975 Willowbrook Consent Decree, which served as a catalyst for reforming treatment for the mentally ill nationwide.

Advocates for the disabled say the case remains in New York Eastern District Court to get the state to live up to its ongoing obligations to former residents in the areas of housing, employment and health care. However, Ms. Weinstein noted it is not an open matter on the court's docket.

In a statement, Ms. Weinstein said the "Web page provides documentation that will assist local Developmental Disabilities Services Offices and voluntary agency staff to comply with the Willowbrook Permanent Injunction," and to "share information" on issues such as aging, community inclusion, due process, guardianship, health care and housing.

Hal Kennedy of New Brighton, an attorney and advocate for the disabled, said he found the timing of the "Beyond Willowbrook" site "surprising."

Kennedy, who is not a party to the suit, also noted factual errors on the Web site, including terming the state school a "developmental center."

"Call it what it was," said Kennedy of the place where families left their severely mentally retarded children, who were then subjected to unspeakable physical and emotional mistreatment.

Still, added Kennedy, "One of my concerns is that the Willowbrook story could get lost. This will help to keep it alive."

Ms. Weinstein said "Beyond Willowbrook" is not meant to be a "historical initiative," but rather part of OMRDD's "ongoing work related to services for the members of the Willowbrook class."

Judy L. Randall is a news reporter for the Advance. She may be reached at randall@siadvance.com

March 11, 2010
By CBC News
Canada has ratified the UN Convention on the Rights of Persons with Disabilities on the eve of the Paralympic Games in Vancouver

"Canada is committed to promoting and protecting the rights of persons with disabilities and enabling their full participation in society," Foreign Affairs Minister Lawrence Cannon said Thursday after delivering the ratified document to UN Secretary General Ban Ki-moon in New York City as activist Traci Walters looked on, beaming, from her wheelchair.

"Ratification of this convention underscores the government of Canada's strong commitment to this goal," Cannon said.

"We are officially turning on its head the notion that people with disabilities are helpless, in need of care and in need of pity," Walters said later.

"The government of Canada's ratification today of the convention is an historic event for Canadians with disabilities," said Marie White, national chair of the Council of Canadians with Disabilities. "It signals the end of an era where people with disabilities were seen as objects of charity. Ratification of the convention makes real our goal of recognition as full and equal citizens of Canada."

The convention will require provincial governments to update several laws, including making schools inclusive to all students. That means disabled students can no longer be diverted to special schools as some still are, said Bendina Miller of the Canadian Association of Community Living.

She cited the experience of one young girl with an intellectual disability whose parents tried to enroll her in Grade One: "Their fears were proved when they walked in to the school office and the secretary took one look at them and said, 'We don't do Down's [Syndrome] here.'"

That student and others like her must now be integrated into a neighbourhood school.

However, the convention is about much more than adding wheelchair ramps. It shifts the focus from institutionalizing those with disabilities to housing them in the community and allowing disabled people to challenge in Canadian courts, laws or policies that contravene the international law.

However, the signing did not go ahead without a glitch. The location of the news conference had to be hastily changed when organizers realized the original room was not wheelchair accessible.

Canadian Broadcasting Corporation

Justice Department Files for Immediate Relief Regarding Conditions at Conway Human Development Center|  
3/11/2010

The Justice Department today asked the Federal District Court for the Eastern District of Arkansas to take immediate action to prevent children from being admitted to the Conway Human Development Center (CHDC) in Conway, Ark. The department's motion for preliminary injunction aims to prevent the segregation of children with developmental disabilities in dangerous conditions and to address accusations of imminent and serious threats to the safety of the facility's more than 500 current residents.

In January 2009, the Justice Department filed a complaint against the State of Arkansas to enforce the federal requirement that individuals with disabilities be served in the most integrated settings appropriate, and to remedy unconstitutional conditions at CHDC. Information collected through discovery since the filing of the complaint has led the department to conclude that residents face increasing and grave risk of harm with each day that deficiencies are ignored, and that Arkansas fails to serve individuals in the most integrated setting appropriate to the residents' needs.

The United States has concluded that children at the facility are particularly vulnerable given allegations that CHDC residents are subjected to dangerous medication mismanagement and harmful, unnecessary restraints. In recent years, at least three CHDC residents have died, suffered possible permanent organ damage or been at risk of hemorrhaging to death because of psychotropic medication mismanagement. CHDC also continues to utilize 41 different forms of mechanical restraints on both children and adults, including straitjackets, restraint chairs and papoose boards - practices that have been largely barred from other facilities for years.

"The State has a responsibility to ensure the safety of individuals who reside in state-run facilities, and we must act swiftly when the state does not live up to that responsibility," said Thomas E. Perez, Assistant Attorney General in charge of the Civil Rights Division. "Individuals with developmental disabilities have the right to live in the most integrated setting appropriate to their needs, and states must take swift action to ensure that all individuals are accorded these basic rights."

In addition to barring inappropriate restraints and requiring safeguards to prevent dangerous medication practices, the motion seeks to require that the state remove barriers to the provision of supports and services in the community, so that individuals with disabilities, including the approximately 50 children at CHDC, are not forced to choose between an unsafe institution and the denial of necessary services in a more integrated setting.

Between June 1, 2007, and Oct. 1, 2009, a CHDC resident was more likely to die than be discharged to a more integrated setting. On average, CHDC residents die at the age of 46.5 years, compared with the average age of 72 years for other individuals with developmental disabilities living in institutional settings. The number of individuals with developmental disabilities who are waiting to receive community-based services is on the rise in Arkansas, with over 1,300 currently waiting to receive services through the Centers for Medicaid and Medicare Services Alternative Community Services waiver program, with an average wait time of approximately two and a half years.

The Civil Rights Division is authorized to conduct investigations under the Civil Rights of Institutionalized Persons Act (CRIPA) and the Americans with Disabilities Act of 1990 (ADA). CRIPA authorizes the Attorney General to investigate conditions of confinement in certain institutions owned or operated by, or on behalf of, state and local governments. In addition to residential facilities serving persons with developmental disabilities, these institutions include psychiatric hospitals, nursing homes, jails, prisons and juvenile correctional facilities. The ADA authorizes the Attorney General to investigate whether a state is serving individuals in the most integrated settings appropriate to their needs. Please visit http://www.justice.gov/crt to learn more about CRIPA, the ADA and other laws enforced by the Justice Department's Civil Rights Division.

Source: U.S. Department of Justice

Sherman Lawyer Gets a Man off Death Row
Posted: March 8, 2010 06:36 PM EST - KTEN.COM 

After 20 years in state and federal courts, a Texas man is now off death row, thanks to the help of one Sherman attorney.

Scott Smith picked up Eric Lynn Moore's case 12 years ago, his battle, to prove Moore was mentally retarded and therefore could not be executed.

Back in 1990, Moore and 3 accomplices were convicted of the robbery and death of a woman after entering a home in Collin County and shooting  the elderly woman and her husband.  The man survived but the woman did not.  According to authorities all four men pulled the trigger, passing the gun for person to person.  "It was not a pretty sight," says Smith.

Smith's battle was not to free Moore from prison, but to relieve him from death row due to his mental incapacity.  In 2002, the United Supreme Court declared the execution of mentally retarded persons unconstitutional, declaring it cruel and unusual punishment.  This is what Smith used to win Moore's case in 2004.

Today (March 8, 2010), the Supreme Court said they would not look into the case, thus upholding Moore's 2004 declaration of mental retardation.

"This is not a get out of jail free card just because he is mentally retarded.  He is now serving a life sentence.  He has to serve his time for his crime," says Smith.

Smith says Moore underwent several mental examines but what ultimately took Moore off death row were his elementary school records.  The records showing Moore was entered into special education classes.

Moore is currently serving his life sentence in Livingston.  Smith says, after it was all said in done, Moore was only concerned about getting a new pair of shoes.  That request was denied.

An estimated 1 in 200 cases for appeals on death row are granted.
Christina Lusby, Reports. 

The R-word: White House to Hollywood, Stage Set for a 1990s-style showdown
03/06/2010
National Post

When Rahm Emanuel scolded liberal groups at a closed-door meeting in Washington last summer for planning to run ads against conservative Democrats, the epithet he chose was not the most intelligent one available. Several witnesses of the meeting told The Wall Street Journal that Mr. Emanuel, President Barack Obama's chief of staff, called the left-leaning advocacy groups' plan 'f---ing retarded.'

Although the meeting had taken place in August, the quote was not reported in the press until about a month ago. Disability activists reacted immediately. In recent months it has become clear that the terms 'retard' and 'retarded' have joined the glossary of words and phrases that public figures cannot utter. The stage has been set for a 1990s-style showdown over whether the R-word can ever be an innocuous epithet or is always too derogatory.

A bid to further eradicate the word from polite discourse was launched last week with a day of awareness for a Special Olympics-led campaign called Spread the Word to End the Word. The campaign's goal was to collect 100,000 pledges not to use the R-words any longer.

Just this week, the Idaho Senate voted unanimously in favour of eradicating the words 'mentally retarded' in state law, as part of a change of what it calls 'archaic and sometimes offensive words.'

"It's a time of change," Jill Egle told The Washington Post earlier this month. She is coexecutive director of the Arc of Northern Virginia, a support group for the disabled, and led a campaign to change the state code in Virginia to erase the word 'retarded.'  But Christopher Fairman, a law professor and free speech advocate, says the campaign to make 'retarded' unspeakable makes him fear 'the targeting of people who really are not using words with the purpose of insulting -- and yet, one slip and it's blown well out of proportion.'

After the Arc of the United States -- formerly, but no longer, the Association of Retarded Citizens-- said Mr. Emanuel 'needs to be taught a lesson in respect for people with disabilities,' Mr. Obama's chief of staff apologized to Special Olympics chairman Tim Shriver. Mr. Emanuel ought to have known he could get into trouble for using 'retard' as an insult. His boss had apologized last March for saying on The Tonight Show that his 129 bowling score 'was like Special Olympics or something.'

In 2008, screenings of the film Tropic Thunder had been picketed by advocates of the intellectually disabled for repeated utterings of 'retard' Two characters, both actors, decide the best Oscar strategy is to play a 'retard,' but not a 'full retard.'

More recently, comedian Sarah Silverman reduced a crowd to near-silence at this year's TED conference in California by telling them she wanted to adopt a 'retarded child' so that people would think she was 'awesome.' The website TechCrunch reported that conference organizer Chris Anderson trashed Ms. Silverman as 'god-awful' on a now-deleted Twitter message.

The campaign to hush the R-word has a famous advocate in Sarah Palin, former candidate for vice-president of the United States and mother to Trig, a son with Down syndrome, who will turn two in April. In a note to her supporters on Facebook, she called for Mr. Emanuel's resignation, equating 'retarded' with 'nigger.'

"Just as we'd be appalled if any public figure of Rahm's stature ever used the 'N-word' or other such inappropriate language, Rahm's slur on all God's children with cognitive and developmental disabilities -- and the people who love them -- is unacceptable, and it's heartbreaking,' she wrote.

Talk radio host Rush Limbaugh reacted in the way expected of a 1990s-vintage conservative, by complaining that people are acting 'like some giant insult's taken place by calling a bunch of people who are retards, retards.'

Prof. Fairman, who teaches law at Ohio State University, says the fuss over the so-called R-word is overblown, and he fears that 1990s-style linguistic inquisitions could ensue from campaigns to remove it from the English language. While Prof. Fairman actually prefers the term "intellectually disabled' for his own speech, he will not be taking the Spread the Word pledge. 'When people say 'retarded,' they normally just mean 'stupid'.... Sort of like 'f--k' doesn't mean sex most of the time, it sort of means anything but that,' he says. He authored a book titled F--k Word Taboo and Protecting Our First Amendment Liberties. He has weathered flak from disability advocates for opinions published in The Washington Post and elsewhere questioning the wisdom of R-word witch hunts.

"Palin had made the connection between 'retarded' and 'nigger.' I don't think there's really as close a parallel between 'nigger' and 'retarded' as there is between 'retarded' and 'gay.' Calling someone retarded is like saying, 'That's so gay.' I'm gay and my 21-year-old daughter says that to me. That's OK. It doesn't even enter her head that she's insulting.'

So what to make, Prof. Fairman asks, of "Rahm Emanuel's or Rush Limbaugh's use, which started the controversy in Washington? I would say neither of those were derogatory and Statistical Manual of Mental Disorders (though possibly not future editions). "I don't think there should be any restrictions of the words we can use, even if it's voluntary restrictions. Certainly, they have the right to try to change the public discourse but the problem that I see with it -- and it's a problem that I've seen with other taboo language -- is that what starts as self-censorship can develop into ... institutional self-censorship,' he says.

Indeed, legislation to scrub the R-word from the law is afoot in many U.S. states, including, most recently, Idaho. State Senator Les Bock was behind the bill intended to strike out dozens of uses of the terms 'mentally retarded' and 'mentally deficient' in state code and replace them with 'intellectually disabled.' " 'Mentally retarded' has been picked up as a word of disrespect or contempt or meaning someone that's really stupid -- or something that's really stupid. A teenager might say, 'Well, that's retarded,' ' he said. 'With the evolution of that word, it really has become an insulting word to use. Just like we don't use the N-word any more, even though it might have been commonplace 150 years ago.'

He points out that there's also one use of "lunatic" and one use of 'idiot' in the code. 'Lunatic' is to be changed to 'person with a mental disability.' Mr. Bock's son has schizophrenia, which gives him a personal interest in this topic. Meanwhile, 'idiot' will become 'persons without understanding.' "Handicapped " will be stricken from the books as well. The bill originated around the time Boise was hosting the 2009 Special Olympics World Winter Games. The state Senator said the bill is necessary to keep legislation in tune with the times. Moreover, he said, 'My view is that language is power and to the extent that we use language to put people down ... it's something that needs to be addressed.'

Maryland has already passed similar legislation, and other states are working to remove offending terms from government agencies' names. Such legislation looks pointless to critics such as Prof. Fairman, who argue that whatever word comes to replace 'retard,' will become pejorative anyway. " The history of the language of intellectual disabilities is a great story for why this is true. The terms 'idiot,' 'feeble-minded,' 'moron' and now 're tard' were all clinical terms. Each one as it is adopted takes on this pejorative, negative connotation,' he explained. ' The same net amount of pain will still be here in the world, unfortunately.'
Copyright © 2010 National Post

House approves bill to limit physical restraint of students
By Nick Anderson
Washington Post Staff Writer

The House approved a bill Wednesday to limit the physical restraint and seclusion of students in schools, a response to an investigation last year that found numerous reports of students abused or killed through such disciplinary measures.

The bill, approved 262 to 153 with support from Democrats and two dozen Republicans, would establish safety standards in schools and prohibit physical restraint and seclusion of students except to stop imminent danger of injury.

It would bar mechanical restraints such as strapping students to chairs and any restraint that restricts breathing. It also would require schools to notify parents after their child is restrained or secluded.

Rep. George Miller (D-Calif.), who sponsored the bill with Rep. Cathy McMorris Rodgers (R-Wash.), cited the case of a Texas student who died in 2002 after a teacher sat on him in a classroom. That case and others were detailed last year in a Government Accountability Office report.

"These victims included students with disabilities and students without disabilities," Miller said. "Many of these victims were children as young as 3 and 4. And in some cases, children died. Restraint and seclusion are complicated practices. They are emergency interventions that should be used only as a last resort, and only by trained professionals."

Opponents, mostly Republicans, said the bill, which would apply to public and private schools that receive federal education money, would push too far into state and local affairs. But supporters said state laws have proved ineffective.

The legislation awaits Senate action.

Students teaching students: A lesson in civility
Published by The Reporter
Posted: 03/03/2010 01:03:20 AM PST

A group of Will C. Wood High School students today is attempting what some might say is an impossible feat: To persuade their peers to stop insulting each other with the "R" word.

Rather than demanding new school rules, confronting people directly or engaging state legislators, the Wood contingent hopes that educating students will get them to think twice before calling each other "retarded."

The problem, students explain, is that the word is hurtful to those who have mental challenges.

"When someone uses the R-word, there is a parallel drawn between someone who has an intellectual disability and stupidity. It always has a negative connotation," said Amanda Hariri, a member of Best Buddies, a campus organization that promotes friendships between disabled and unimpaired students.

The Wood effort is part of a national Spread the Word to End the Word campaign that took root last year during a youth summit at the Special Olympics World Winter Games. There, a "united passion to promote the positive contributions of people with intellectual disabilities" emerged, according to literature posted on the Web site www.r-word.org. Special Olympics teamed up with Best Buddies and other interested groups -- now numbering more than 200 -- to promote the campaign.

Wood student Zoe Berman learned about it at a Best Buddies conference last summer.

On the local campus, members of Best Buddies, Link Crew and student government have put together music, speeches and a video to explain their point to other students. "We want to make people aware of what they say and how it affects others," Ms. Berman told The Reporter.

That's a lesson more than a few adults would do well to learn.

If there is anything to criticize about this student-led awareness attempt, it is only that high school seems too late. This sort of name-calling typically starts in elementary school.

But all movements have to start somewhere. If Wood students can persuade even some of their classmates to think twice before they drop the R word, their effort will be worth it.

Judge Orders New York City to Move Mentally Ill Out of Large, Institutional Housing
By A. G. SULZBERGER - March 1, 2010

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday.

The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

Gloria Thomas, who lives in a shared room at the Queens Adult Care Center in Elmhurst, reacted to the ruling with joy. “Thank you Jesus, this is what I’ve been waiting for for the longest time,” said Ms. Thomas, 54, who has been at the home for two years. “I need to get out of here.”

In supported housing, a resident lives alone or in a small group and receives specialized services from counselors who visit as needed.

“This will give adult home residents the opportunity to live the way the rest of us do,” said Jennifer Mathis, deputy legal director of the Bazelon Center for Mental Health Law, which provided legal support for the lawsuit. “In the future people should not be steered to adult homes if they don’t want it and they don’t need it.”

The state is considering an appeal, according to a one-sentence statement from Gov. David A. Paterson’s office.

During a five-week trial last summer, the state argued that advocates had overestimated the demand for supported housing and underestimated the cost, making a quick transition for the bulk of the adult home population unfeasible. It is unclear whether any changes resulting from the lawsuit, which was limited to New York City, will be applied to adult homes elsewhere in the state.

Jeffrey J. Edelman, president of the New York Coalition for Quality Assisted Living, which represents 14 of the 28 large adult homes in the case, called the order irresponsible and deeply disturbing, and he urged the state to appeal. “The judge’s decision, entirely following the advocates’ agenda, could force thousands of the mentally ill from their stable lives in adult homes into independent living situations for which the majority are neither psychiatrically suited nor prepared,” Mr. Edelman said in a statement.

If it stands, the order will transform a system that took shape in the 1960s, when the government embraced adult homes as a way to care for people with mental illness after the rapid closing of large state-run hospitals. But as with the earlier institutions, the adult homes struggled under continued lax state regulation and poor private management.

The lawsuit was filed in 2003 by Disability Advocates, a nonprofit legal services group, after a series of articles in The New York Times that described a system in which residents were poorly monitored and barely cared for, left to swelter in the summer and sometimes subjected to needless medical treatment and operations for Medicaid reimbursement.

The state argued that conditions had markedly improved at adult homes in recent years, but the judge ruled last year that their operation discriminated by keeping residents separated from the outside world and providing them little encouragement to find work, make friends or learn skills like cooking, shopping and budgeting.

“This decision is really important for those of us who want to live in the community,” said Erica von Nardroff, 49, who has lived at Elm York Home for Adults in East Elmhurst for the past three and a half years.

“I need to move on with life,” she added, “and being isolated here is not the way to do it.”

Judge Garaufis’s order rejected the remedy proposed by the state, which continued to dispute many of the findings of his previous rulings and which sought to cap the number of new supported housing units at 1,000, to be made available over five years. “The court is disappointed and, frankly, incredulous that defendants sincerely believed this proposal would suffice,” the judge wrote.

In the order on Monday, the judge said that only people with the most severe mental illness, including those deemed a danger to themselves or others, should be housed in large adult homes. He also said that people who were eligible for supported housing could choose adult homes as long as they had been apprised of their options.

The judge ordered the appointment of a federal monitor to ensure the state followed his plan, and he said both sides must suggest candidates this week.

House budget restores Medicaid waiver program
BY KATHERINE CALOS
Media General News Service
Published: February 26, 2010

The 6,000 people on a waiting list for Medicaid-funded services at home got 178 reasons to smile Thursday when the House of Delegates added 178 waiver slots to its budget proposal.

People with disabilities and their supporters had assailed Gov. Bob McDonnell’s proposal to eliminate a consumer-directed Medicaid waiver program that allows elderly or disabled people to hire their own caretakers.

McDonnell had estimated $62.9 million in savings by assuming that half would not receive services from agencies. The consumer-directed waiver program was retained in the House version of the state budget, but the backlog remains a problem.

“We have about 6,000 on the waiting list, and it’s growing because families are choosing to remain in the community” instead of using institutional care for people with severe developmental or intellectual disabilities, said Jamie Liban, executive director of The Arc of Virginia.

Last year, the waiting list grew by 900 people, Liban said. Even with the slots added yesterday, the anticipated number of new waivers has been cut by 956, eliminating 822 waivers for people with intellectual disabilities and 134 waivers for people with developmental disabilities, she said.

Only 100 of the new waivers will be available in the first budget year. At that rate, she said, it would take 60 years to eliminate the waiting list even if no one was ever added.

“We’re incredibly grateful that the House has added those 178 . . . waivers,“ Liban said. “While we’re grateful, there’s still a lot more work to do. The first step will be making sure the Senate includes the full 178.“

Del. Robin A. Abbott, D-Newport News, and M. Kirkland Cox, R-Colonial Heights and vice chair of the House Appropriations Committee, gave emotional floor speeches in favor of the waivers on the House floor Tuesday. Cox said the long waiting list is inexcusable.

All of the new waivers will be for people with intellectual disabilities, who face a waiting list of 5,200 people. The developmental-disabilities waiver program, which has 800 people on a waiting list, hasn’t received new funding in four years, Liban said.

“There are people whose lives depend on these services,“ said Fred Orlove, executive director of the Partnership for People with Disabilities at Virginia Commonwealth University.

Mary Ann Bergeron, executive director of the Virginia Association of Community Services Boards, said: “Without these waiver services, these people would long ago have defaulted to nursing homes or facility care at a much higher cost.“

To Susan Cramer of Hanover County, the waiver program is essential for getting help to take care of daughter Kaitlyn, 22, who weighs only 42 pounds and uses a motorized wheelchair because of multiple disabilities. |

“Being in an institution, she’d probably die in a couple of weeks,“ Cramer said. “That’s an extreme statement, but if she needs to go into a hospital, we can’t even leave her.

“She has pins in her hip and back. If you pick her up incorrectly, you’ll break her shoulder, break her leg. It’s been done. It’s happened.“

US opens Canton school inquiry
Shock discipline at Rotenberg center prompts concern
By Patricia Wen - Globe Staff / February 25, 2010

The US Department of Justice has opened an investigation into whether a special needs school in Canton violates federal disability laws by disciplining students with electrical skin shocks. It is the first federal probe of the highly scrutinized Judge Rotenberg Educational Center and follows demands from more than 30 disability rights groups from across the country.

In a September 2009 letter, the groups said the facility’s use of “painful and dehumanizing behavioral techniques violates all principles of human rights.’’ They seek to end the school’s use of shock therapy, something that several state inquiries have so far failed to do.

For nearly four decades, the school has generated controversy for its unorthodox methods, administered to roughly half of the 200 students. Many of them have autism, developmental disabilities, or emotional troubles, and some have criminal records or are at risk of hurting themselves. Those students wear electrodes attached to their skin, and staff members can remotely trigger a two-second electrical shock through a hand-held device.

Many parents who have children at the Rotenberg center have supported the school, saying it accepted their children when other institutions turned them away or that the shocks are a better alternative to heavy sedation administered at some facilities.

But advocates for the disabled have been sharply critical, spurring a number of efforts to close the school.

Michael Flammia, an attorney for the Rotenberg Center, said the school has cooperated with all investigators over the years. He defended the state-licensed school as an important and safe facility that has helped hundreds of students each year. He said any child who receives its skin-shock discipline does so only under a court-approved plan.

Renee Wohlenhaus, deputy chief of the Disability Rights Section of the Justice Department, said in a letter last week that her agency would look into whether the Rotenberg Center violates the nation’s laws on the fair treatment of the disabled. She did not respond to a request for an interview. While Wohlenhaus’s letter referred to the inquiry as a routine investigation, federal officials and disability advocates say the investigation is significant because the agency does not choose to probe all complaints they receive.

Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities and the author of the letter on behalf of the disability groups, said her conversations with Justice Department officials lead her to believe that their probe will be far from “perfunctory.’’

Among the groups signing the letter are major disability rights groups, such as ARC of the United States, the Autism National Committee, and United Cerebral Palsy.

The Massachusetts attorney general’s office is also looking into whether the Rotenberg Center violated any laws in 2007, when staff members were duped by a phone caller who pretended to be a top school official and ordered dozens of punishing electrical shocks on two students. School authorities later destroyed surveillance tapes that recorded the incident.

Charles Dumas, the father of a student who received the punishing shocks, said the attorney general’s office has interviewed him and his son, Kyle, in the past several weeks.  After the incident, the school adopted new procedures to avoid repetition of the incident, Flammia said.

The center has endured two attempts by state agencies to close the facility in the mid-1980s and mid-1990s. Many parents have praised the founder of the Rotenberg Center, Harvard-educated psychologist Matthew Israel, as being a savoir for their extremely difficult children.

The school’s critics maintain that the Rotenberg Center’s methods are barbaric. Some disability advocates say students are punished for behaviors as minor as stopping work for a short time, getting out of their seats, interrupting others, or whispering. 

They say some youngsters are deprived of food and placed in prolonged restraints, sometimes while being shocked.

Polyxane Cobb, a member of the Coalition for the Legal Rights of People with Disabilities in Boston, said she is hopeful that federal authorities will stop the practice. “I don’t think the Department of Justice wastes its time on a casual investigation,’’ she said. 

More Catholic Schools Reaching Out to Special-needs Students
By Michael Alison Chandler
Washington Post Staff Writer - Tuesday, February 23, 2010; B01

A math class for students with intellectual disabilities at Paul VI Catholic High School in Fairfax practiced naming dates on a calendar one recent morning and deciphering what time it is when the big hand is on the 10 and the little hand is on the 11. But first, the teacher led them in a prayer.

"Father in heaven, we offer you this class and all that we may accomplish today," they said together.

Federal law requires that public schools offer a free, appropriate education for students with disabilities, and federal and state governments subsidize the higher costs of smaller classes and extra resources. Catholic schools have no such legal mandate, and financial constraints have historically made it difficult for them to offer similar specialized services.

That is starting to change.

Forty-two percent of Catholic elementary schools in the United States had a resource teacher to help students with special needs in 2008-09, up from 28 percent in 2001-02, according to the National Catholic Educational Association. The Arlington County-based group hosts conferences to help schools establish relevant programs and offers scholarships to teachers pursuing special-education degrees.

"Children with disabilities have a right to a faith-based education," said Bernadette McManigal, superintendent of Arlington Diocese Catholic schools. "We want to provide that as best we can."

Many Catholic schools now offer support for students with learning disabilities such as attention-deficit disorder or Asperger syndrome. The portion equipped to enroll students with intellectual disabilities, historically defined as those scoring below 70 or 75 on an IQ test, is still small, but it, too, is growing.

In the Washington Archdiocese, which covers the District and part of Maryland, one school offered services for students with intellectual disabilities in 1998. Now, six of 61 elementary schools serve such students, and two more -- the Shrine of the Most Blessed Sacrament School in the District and St. Mary's School of Piscataway in Clinton -- are starting programs next year. Bishop McNamara High School in Forestville plans to join them in the next two years.

FOR IMMEDIATE RELEASE:  February 22, 2010
Contact:  Jamie Liban-  804.649.8481 ext. 101 or jliban@thearcofva.org

The Arc of Virginia: Families Outraged By Delegate Robert Marshall’s Remarks

The Arc of Virginia is surprised and disappointed by remarks attributed to Delegate Robert Marshall indicating he believes children with disabilities were "God's punishment."   Such unfortunate remarks continue to lend credence to the stigma people with disabilities and their families are fighting to overcome. 

Since this issue went public today, many family members who heard the audio remarks have contacted The Arc to express their outrage over Delegate Marshall’s statements.   Delegate Marshall has issued an apology saying he “regrets any misimpression my poorly chosen words may have created as to my deep commitment to fighting for these vulnerable children and their families.”  The Arc takes him at his word. 

Mr. Howard Cullum, President of The Arc of Virginia said, “Many of our families are struggling with the 24/7 care taking demands.  It is rewarding but hard work.  Families don’t appreciate statements that can be construed to connect having a disabled child with some religious punishment.  Our families don’t need the grief or the guilt.”

According to Mr. Cullum, “The Arc families are especially sensitive now because of proposed state budget cuts to critical services that support persons with intellectual or developmental disabilities.  The Arc appreciates yesterday’s House and Senate budget reports that seek to restore some of the services.  However, the important waiver program is still slated to lose 1,134 waiver slots that were scheduled to begin reducing the long wait lists.  Our wait list families are in pain and crisis.”

The waiver wait list is now over 6,000 persons and growing rapidly.  The lack of waivers means families will now have to wait at least another two years before any new waiver slots are available.  Some families have already been waiting for years.  The safety net for our families is in tatters.

Historically, Virginia's track record for valuing the lives of people with disabilities has not been good.  The Commonwealth was notorious for its history of involuntary sterilization, for its state-sponsored segregation and institutionalization and for its minimal help for families. Even today, Virginia is currently ranked 46th in the country for its community support of people with developmental disabilities and their families. 

At a time when the majority of states are moving people with intellectual disabilities out of institutions, Virginia is the only state seeking to rebuild costly, segregated state institutions for people with intellectual disabilities.  The Arc is hopeful that Delegate Marshall’s comments, however offensive to our families, draw public attention to the plight of families caring for persons with disabilities in our state.    

###

Feb 21, 2010 – Hartford Courant
Southbury: Morally wrong, wasteful

For moral and fiscal reasons it's time to close Connecticut's last institution for the intellectually disabled, the Southbury Training School.

The institution is outrageously expensive, strikingly out of date and defies modern thinking that the intellectually disabled are better off when integrated into the community.

For 15 years state political leaders have refused to confront the legal and moral contradictions that Southbury presents. They should begin the process of expeditiously closing this institution.

Southbury is needlessly bleeding money. The intellectually disabled clients - persons once described as having mental retardation - would be better off in residential community settings that in the private sector operate at one-third the cost of Southbury.

It is not only morally the right thing to do, but legally as well.

In 1999 the U.S. Supreme Court ruled in the Olmstead case that under Title II of the Americans with Disabilities Act states, under certain conditions, are required to place people with mental disabilities in community settings. Segregating individuals in institutions when community placement is appropriate was determined to be discrimination.

Connecticut was once a leader in this respect. Seaside Regional Center closed in 1996 and the state shuttered Mansfield Training School, which housed more than 1,600 intellectually disabled clients in its heyday, in 1993. The state moved these residents to group homes, apartments, or other housing, with support services to integrate them in the community.

Except for Southbury, where there was resistance that led to a lawsuit still being litigated today.

Last week in U.S. District Court in New Haven, hearings got under way to address the court's 2008 finding that in its operation of Southbury the state had violated the statutory and constitutional rights of its residents. It did so by failing to make independent, professional judgments on whether residents could benefit by leaving the institution. Further, it failed to make such placements available to residents who wanted them. The hearings will continue next month.

Former Republican Gov. John G. Rowland started the legal battle in the late 1990s by refusing to deinstitutionalize Southbury. Instead, he advocated spending millions to upgrade the institution and bring it into compliance. There were 793 residents at Southbury then and the majority of them were 45 or older.

Today the average age of the 458 remaining Southbury clients (the state halted admissions in the mid-1980s) is 62, and for many of them the 1,600-acre campus has been their home for decades. But experts say most would still adapt and benefit from community, rather than institutional living.

And so would taxpayers. In a state facing a fiscal crisis, it costs about $350,000 annually to care for every Southbury client, opposed to about $122,000 if they were in a private-sector, community-living situation.

Southbury employs 1,325 people to care for 458, and according to the state, current collective bargaining agreements require public operation of community residences for Southbury residents if the institution closes. That would require $100 million in new state bonding, a state spokeswoman said.

Southbury's 2009 budget was $96.5 million, 10 percent of the almost $1 billion allocated to the state Department of Developmental Services last year. In other words, because of Southbury the department that serves almost 20,000 people with developmental disabilities ends up spending about 10 percent of its budget on 2 percent of its population.

The state has yet to show its hand in the latest court proceedings, but Friday a spokesman for Gov. M. Jodi Rell said, "the governor continues to support community placement for residents who choose to move and the current and future operation of STS for residents who choose to remain."

That is disappointing. Southbury is the last institution of its type in New England. It is a throwback to another time, when rather than integrating the mentally retarded, society warehoused them.

For inexplicable reasons Connecticut's politicians have never adequately addressed the legal and moral questions on Southbury. Now, it looks like Gov. Rell will squander an opportunity to do the right thing in fiscal hard times.

Autism Bill Pass In VA Senate
WTKR-TV3, 6:15 PM EST, February 17, 2010

A bill mandating insurers to cover treatment of autistic children ages 2 to 6 has passed in the Virginia Senate and is moving on to the House of Delegates.

The law would require health insurance providers to provide coverage of up to $35,000 a year for treatment of the brain disorder. There are already laws requiring insurance to pay for coverage in about a dozen states.

Four-year-old Sean O'Keefe falls into the category of children with autism who would benefit from this bill. His mother, Vania, has had to quit her job in order to shuttle Sean to school in Chesapeake, speech therapy in Virginia Beach and even more testing in Suffolk. She spends about $500 a week for services not covered by health insurance.

Vania says, "We've been basically going through our savings for Sean's therapy. We've been doing whatever we can. We even tapped into our 14-year-old's college fund to pay for it. Pretty soon that's going to be gone."

Senator Janet Howell introduced the bill to mandate insurance companies cover autism treatment for children. It won by a 27-13 vote. However, despite provisions that limit age and allows small businesses to opt-out, opponents say it will increase insurance premiums. Insurers are further contending that autism treatment is educational, not medical.

Virginia Beach Senator Frank Wagner is voting against the bill for another reason. He says, "If we're going to apply it to the businesses on their health insurance plans, then we ought to be willing to step forward and treat our employees that work for the Commonwealth of Virginia in the same manner."

As passed, the bill will-not cover state employees because Virginia simply can't afford it. Proponents to the bill say that shouldn't stop businesses that can.

Copyright © 2010, WTKR-TV

Alcohol Tax Legislation Named for Tireless Champion of Disability Rights

The Lorraine Sheehan Health and Community Services Act of 2010, House Bill 832, was introduced by Montgomery County Delegate Bill Bronrott and had its first reading in the Maryland House of Delegates Ways & Means Committee, announced the Maryland Developmental Disabilities Coalition.

The legislation was named to honor former Maryland House of Delegates’ member Lorraine Sheehan who died in 2009. Elected to the House of Delegates in 1974, 1978, and 1982, Ms. Sheehan also served as Maryland Secretary of State from 1983 to 1987. She was inducted into the Maryland Women's Hall of Fame in 2002.

Rejecting medical advice to institutionalize her son who was diagnosed with autism and intellectual disabilities, Ms. Sheehan dedicated her life to improving the quality of living and expanding residential opportunities for individuals with developmental disabilities.

Ms. Sheehan he was president of The Arc of the United States, a national advocacy organization serving children and adults with intellectual and developmental disabilities. She also held Arc's Maryland State and Anne Arundel County presidencies.

"Her keen sense of political strategy combined with fierce determination and unwavering tenacity made her a role model and mentor for hundreds of people with disabilities and their families," said The Arc of Maryland director Cristine Marchand. "Thousands more have benefited from her advocacy at the state, local and national levels. Lorraine’s gift was bringing people together for a common justice cause – and this Act that brings together multiple organizations and coalitions around the cause of health care and dignified lives for people with disabilities is aptly named in her honor.

The Lorraine Sheehan Health and Community Services Act of 2010 will increase alcohol taxes by a dime per drink in the state of Maryland and raise $214 million in new revenues. The new revenues would be divided as follows:

®      15% to Development Disability Support Fund, § 7-207 of the Health – General Article

®      15% to the Addiction Treatment and Prevention Fund, § 8-207 of the Health – General Article

®      15% to the Mental Health Care Fund, § 10-209 of the Health – General Article

®      42.25% to the Maryland Medicaid Trust Fund, § 15-103.6 of the Health – General Article, to fund health care coverage for childless adults

The Act will save $249 million in healthcare costs, avert 15,000 cases of alcohol abuse, 316 assaults, 67 incidents of severe violence against children, and 37 premature deaths every year. It will create and preserve jobs in crucial sectors of healthcare and other state services and reduce drinking among young people and heavy drinkers.

The companion bill, Senate Bill 717, sponsored by Senators Jones, Madaleno, Exum, Forehand, Frosh, Lenett, Pinsky, and Raskin was first heard in the Maryland Senate Budget and Taxation Committee.

The 41 House of Delegates co-sponsors are: Delegates Bronrott, Hubbard, Ali, Anderson, Barnes, Benson, Bobo, Burns, Carr, Carter, Dumais, Feldman, Frick, Frush, Gaines, Gilchrist, Gutierrez, Guzzone, Hucker, Ivey, Kramer, Kullen, Lee, Levi, Manno, McIntosh, Mizeur, Montgomery, Nathan-Pulliam, Pena-Melnyk, Ramirez, Reznik, Robinson, Rosenberg, Ross, Simmons, Stukes, Tarrant, Taylor, Valderrama, and Waldstreicher

A coalition that supports the Lorraine Sheehan Act of 2010 includes:

®      AARP Maryland

®      The Arc of Maryland

®      Community Behavioral Health Association of Maryland

®      Cross Disability Rights Coalition

®      Health Care for the Homeless

®      Maryland Addictions Directors Council

®      Maryland Association of Community Services

®      Maryland Citizens’ Health Initiative (and their 1200 organizational endorsers)

®      Maryland Developmental Disabilities Council

®      Maryland Disability Law Center

®      Mental Health Association of Maryland

®      Mothers Against Drunk Driving

®      National Alliance on Mental Illness of Maryland

®      National Association of Social Workers – Maryland Chapter

®      National Council on Alcoholism and Drug Dependence – Maryland Affiliate

®      People On the Go of Maryland

Link to legislation:

http://mlis.state.md.us/2010rs/billfile/hb0832.htm

For more information on the Lorraine Sheehan Health and Community Services Act of 2010 , contact Laura Howell, MD Developmental Disabilities Coalition 410-740-5125; Nancy Rosen-Cohen, NCADD-Maryland 410-625-6482; Linda Raines, Maryland Mental Health Coalition 410-235-1178; or Vinny DeMarco, Health Care for All 866-433-8451.

Your mother was right: Think before you speak - McClatchy Newspapers
Published Friday, Feb. 12, 2010

The phrases are disrespectful, demeaning and, frankly, unimaginative.

But they're annoyingly ubiquitous.

And that was even before The Wall Street Journal provided Sarah Palin a nugget with which to make political hay.

"That's just retarded" and "That's so gay" have become all-purpose put-downs, used in contexts that have nothing to do with cognitively challenged or homosexual individuals.

But just because words and phrases gain currency in the language doesn't make them valuable or essential to discourse.

The problem is, how do you eradicate hurtful expressions from common overuse?

The Journal wasn't actually calling out White House Chief of Staff Rahm Emanuel on his language in a late January story about liberal groups' frustration with the Obama administration.

The story reported that Emanuel, whose foul mouth has been well-chronicled, called it "f---ing retarded" for the interest groups to run ads attacking conservative Democrats whose votes would be needed on health-care legislation.

Palin pounced via Facebook, chastising Emanuel for a "slur on all God's children with cognitive and developmental disabilities - and the people who love them." She didn't take specific issue with his f-bomb, though. Curious, that.

Why did the former Alaska governor's reaction look only partly sincere? Because she then called it acceptable satire for Rush Limbaugh to huff that it's no insult to call "a bunch of people who are retards, retards."

Not that he was defending Emanuel, mind you; Limbaugh used the slur to show his contempt for those liberal groups whose politics he despises.

Seeing its own opportunity, Sen. Kay Bailey Hutchison's campaign followed by telling CNN that Palin buddy Gov. Rick Perry had his own r-word issues:

CNN had Hutchison campaign manager saying that in a phone call Perry consultant David Carney had called it "just retarded" and "the most retarded thing I've ever heard" for the Republican gubernatorial candidates to wait for their Jan. 14 debate in a building separate from where they'd be speaking.

In these contexts, the r-word seems to mean moronic. But troll the online Urban Dictionary, and the many definitions offered include just the opposite of stupid. Such is slang.

You can also find debates over whether in an earlier r-word version of the Black Eye Peas hit "Let's Get it Started" the word meant to get crazy dancing or drunk or just slow things down.

Words and their meanings evolve, sometimes in good ways and sometimes in bad.

Words fall into and out of favor.

Sometimes the language changes with the times for perfectly good reasons. (Nothing wrong with "firefighter" instead of "fireman" when the job's no longer gender-restricted.)
Sometimes revisions made in good faith just sound silly or perverse. (Domestic engineer, anyone?)

But whether bigotry, nastiness, vulgarity or meanness become more entrenched or acceptable - and how we prevent that - is more complicated.

It's taken decades and protests and public education and media awareness and shifting generations to purge some of the ugliest of English words from widespread American usage. Yet some persist in private conversation and public confrontations when small minds resort to malicious insults.

At the same time, profanity has coarsened our culture and our everyday lives.

The Federal Communications Commission doesn't much like the f-word in any of its iterations. Nor do I. But think of how many people drop it - or the b-word that rhymes with "witch" - for everything from a threat to a challenge to an epithet, even to an unthinking placeholder like "you know."

Offensive as that is, though, it's not equivalent to an affront toward an entire group of people who have done nothing more than be an easy target for denigration.

How to eradicate offensive speech?

With more speech that asks people to think about what they're saying.

It's ironic that the Palin-Emanuel brouhaha has called attention to the Special Olympics' year-old campaign to raise awareness about "the dehumanizing and hurtful effects" of the r-word.

March 3 is the second "Spread the Word to End the Word" awareness day.

Maybe the organizers could get a plug from President Barack Obama, who on "The Tonight Show" a year ago tactlessly compared his pathetic bowling skills to "like Special Olympics, or something."

It's not political correctness to say that some language is just too rude. That's common courtesy.

ABOUT THE WRITER

Linda P. Campbell is a columnist and editorial writer for the Fort Worth Star-Telegram. Readers may write to her at 400 W. 7th Street, Fort Worth, Texas 76102, or via e-mail at lcampbell@star-telegram.com.

Changes Proposed in How Psychiatrists Diagnose
By LAURAN NEERGAARD (AP) – 1 day ago

WASHINGTON — Don't say "mental retardation" — the new term is "intellectual disability." No more diagnoses of Asperger's syndrome — call it a mild version of autism instead. And while "behavioral addictions" will be new to doctors' dictionaries, "Internet addiction" didn't make the cut.

The American Psychiatric Association is proposing major changes Wednesday to its diagnostic bible, the manual that doctors, insurers and scientists use in deciding what's officially a mental disorder and what symptoms to treat. In a new twist, it is seeking feedback via the Internet from both psychiatrists and the general public about whether the changes will be helpful before finalizing them.

The manual suggests some new diagnoses. Gambling so far is the lone identified behavioral addiction, but in the new category of learning disabilities are problems with both reading and math. Also new is binge eating, distinct from bulimia because the binge eaters don't purge.

Sure to generate debate, the draft also proposes diagnosing people as being at high risk of developing some serious mental disorders — such as dementia or schizophrenia — based on early symptoms, even though there's no way to know who will worsen into full-blown illness. It's a category the psychiatrist group's own leaders say must be used with caution, as scientists don't yet have treatments to lower that risk but also don't want to miss people on the cusp of needing care.

Another change: The draft sets scales to estimate both adults and teens most at risk of suicide, stressing that suicide occurs with numerous mental illnesses, not just depression.

But overall the manual's biggest changes eliminate diagnoses that it contends are essentially subtypes of broader illnesses — and urge doctors to concentrate more on the severity of their patients' symptoms. Thus the draft sets "autism spectrum disorders" as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism's lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger's or "pervasive developmental disorder" as doctors do today.

The psychiatric group expects that overarching change could actually lower the numbers of people thought to suffer from mental disorders.

"Is someone really a patient, or just meets some criteria like trouble sleeping?" APA President Dr. Alan Schatzberg, a Stanford University psychiatry professor, told The Associated Press. "It's really important for us as a field to try not to overdiagnose."

Psychiatry has been accused of overdiagnosis in recent years as prescriptions for antidepressants, stimulants and other medications have soared. So the update of this manual called the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, fifth edition — has been anxiously awaited. It's the first update since 1994, and brain research during that time period has soared. That work is key to give scientists new insight into mental disorders with underlying causes that often are a mystery and that cannot be diagnosed with, say, a blood test or X-ray.

"The field is still trying to organize valid diagnostic categories. It's honest to re-look at what the science says and doesn't say periodically," said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.

The draft manual, posted at http://www.DSM5.org, is up for public debate through April, and it's expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger's syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.

"It's really important to recognize that diagnostic labels very much can be a part of one's identity," said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. "People will have an emotional reaction to this."

Liane Holliday Willey, an author of books about Asperger's who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.

"I cannot fathom how anyone could even imagine they are one and the same," she wrote. "If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down."

Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term "intellectual disability" in place of "mental retardation." Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word "retarded" to describe some activists whose tactics he questioned. He later apologized.

AP Medical Writer Lindsey Tanner in Chicago contributed to this report.
Copyright © 2010 The Associated Press. All rights reserved.

Disorder Out of Chaos
By ROY RICHARD GRINKER, Op-Ed Contributor, The New York Times

February 10, 2010 - Washington

If you ask my daughter, Isabel, what autism means to her, she won’t say that it is a condition marked by impaired social communication and repetitive behaviors. She will say that her autism makes her a good artist, helps her to relate to animals and gives her perfect pitch.

The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

Many people with milder symptoms of autism have, for the past 20 years or so, received a diagnosis of Asperger’s disorder. Some autistic adults call themselves “Aspies” to celebrate their talents and differences. And many parents have embraced the label because they have found it less stigmatizing, and so it has eased their sense of loss.

This may soon change, however. The American Psychiatric Association, with its release this week of proposed revisions to its authoritative Diagnostic and Statistical Manual of Mental Disorders, is recommending that Asperger’s be dropped. If this revision is adopted, the condition will be folded into the category of “autism spectrum disorder,” which will no longer contain any categories for distinct subtypes of autism like Asperger’s and “pervasive developmental disorder not otherwise specified” (a category for children with some traits of autism but not enough to warrant a diagnosis).

The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.

It’s no longer a secret that people with autism can have careers and meaningful social relationships. Witness the spate of recent movies, from HBO’s “Temple Grandin,” about a woman with autism who became an animal scientist famed for her designs of humane slaughterhouses, to “Mary and Max,” an animated feature about a friendship between a 44-year-old man with Asperger’s and an 8-year-old girl.

But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. Indeed, in the current diagnostic manual, a child who has good language acquisition and intelligence qualifies as autistic if, in addition to having restricted interests and problems with social interactions, he has just one of the following symptoms, which are common among children with Asperger’s: difficulty conversing, an inability to engage in make-believe play or repetitive or unusual use of language. Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with autism often exhibit isolated autistic traits. With autism, as with many medical diagnoses — like hypertension and obesity — the boundary lines are drawn as much by culture as by nature. Dividing up the workings of the mind is not as neat and orderly as categorizing species.

The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

Roy Richard Grinker, a professor of anthropology at George Washington University, is the author of “Unstrange Minds: Remapping the World of Autism.”

LaPointe Deserves A New Trial

Rick Green, Courant.com
February 9, 2010

One of the nation's most notorious examples of alleged wrongful conviction will soon return to center stage, perhaps finally providing an answer to a disturbing question.

Could convicted killer Richard LaPointe really have raped and murdered Bernice Martin?

Perhaps LaPointe's last shot at freedom will come in a Rockville courtroom this May, when a judge will consider evidence that his supporters say proves he deserves a new trial.

The May hearing could lead to freedom for the mentally disabled man who was found guilty in 1992 of the rape and murder in Manchester of Martin, his wife's 88-year-old grandmother.

The result will say plenty about justice in Connecticut. There has been no willingness by authorities to re-examine the questionable circumstances surrounding LaPointe's conviction.

The questions begin with the blind acceptance of a confession from a man with an I.Q. of 80 and extend to the exclusion of critical evidence and the incompetence of LaPointe's previous lawyers.

The evidence against LaPointe, now 64, in the 1987 crime is impressive — three confessions and a failure by his supporters to prove, despite repeated attempts, LaPointe's innocence.

But now, because of a state Appellate Court ruling last year, which overturned a lower court's ruling dismissing LaPointe's bid for a new trial, a Superior Court judge will review whether critical exculpatory evidence — an expert's analysis of the "burn time" of the fire that was set by the killer to cover up the murder — was not disclosed by the state.

"The state suppressed evidence. [LaPointe's] lawyers were ineffective. They didn't make use of the evidence that shows he didn't commit the crime," said Paul Casteliero, a lawyer for LaPointe. "The jury should have been aware of that."

"It is mind-boggling to me. The state never fixes a time when this whole thing happened."

Casteliero says that the evidence, in the form of notes from an arson investigator, doesn't fit the state's scenario for the murder on the evening of March 7, 1987. He said the notes suggest that the fire that Martin's killer set after the murder had burned too long for LaPointe to have quickly assaulted and murdered Martin and then calmly returned to his nearby home for an evening of television watching.

Chief State's Attorney Kevin Kane declined to comment about the case because it is a pending matter.

The state Appellate Court, in a ruling last year that represents the first victory for LaPointe in the decades-old case, noted that if the fire had been burning for 30 to 40 minutes — instead of a much shorter period — then a potential, if thin, alibi emerges:

"There was sufficient evidence presented ... to establish the potential exculpatory nature of a burn time estimation because evidence was submitted that, if credited, tenuously would have established an alibi for the window of time created by this burn time estimation."

The state's unwillingness to reconsider is no surprise, said Kate Germond, an investigator and associate director of Centurion Ministries, which works to reverse wrongful convictions.

"They hang on pretty tenaciously to these cases. I think they are used to having their own way. Their impulse is to circle the wagons."

"This case in particular really gnaws at us," said Germond, whose group is actively involved in about 20 cases throughout the country. "Richard is getting older. His life expectancy isn't as long as you and I might enjoy."

A new trial for LaPointe is long overdue.

Because if LaPointe didn't do it, this is more than a case of the system taking advantage of a hapless disabled man.

The real killer may have gotten away with murder.

Copyright © 2010, The Hartford Courant 

FOR IMMEDIATE RELEASE                              Contact:  Laura Hart, hart@thearc.org
February 5, 2010                                                              202.534.3712; 301.325.5650

LETTER FROM THE ARC TO RUSH LIMBAUGH:  MEET WITH US

February 5, 2010

Mr. Rush Limbaugh
1270 Avenue of the Americas, 9th Fl.
New York, NY 10020

Dear Mr. Limbaugh:

I am writing on behalf of The Arc of the United States (The Arc), the oldest and largest national nonprofit organization that advocates on behalf of and serves people with intellectual and developmental disabilities. With 730+ chapters nationwide, The Arc is committed to the full inclusion and participation of people with disabilities in all aspects of community life.

Earlier this week, on behalf of The Arc, I participated in a frank discussion with White House Chief of Staff, Rahm Emanuel, regarding comments he made that offended our constituency. On the same day, you engaged in extensive commentary about that meeting, as well as the events surrounding it, using the same offensive language.

I am inviting you to meet personally with a group of individuals with intellectual and developmental disabilities, their parents, and siblings to engage in an open and honest dialogue regarding the language you used in your recent commentary. We would like to provide you the opportunity to hear, first hand, why people with intellectual and developmental disabilities believe the words “retard” and “retarded” and similar phrases need to be removed from common use.

Self-advocates, parents, disability rights activists and others are rightly concerned that your comments simply serve to further degrade and denigrate the 7 million individuals with intellectual and developmental disabilities who struggle on a daily basis to be included in society. We believe that a face to face meeting to discuss these concerns and share the personal impact on these individuals would go far in informing you and your listeners.

I cannot understate the effect of a word many consider an epithet – it is deeply offensive to people that are living with intellectual disabilities, and the tens of millions of their parents, siblings, family members and friends. It is a harsh reminder of the institutionalization, sterilization, abuse, discrimination, violence and exclusion they have faced, and continue to face, as they merely seek to live typical lives.

I invite you to meet with a group of people with intellectual disabilities and their families in a city of your choosing – New York, Washington, DC, or another location. I look forward to a favorable reply.

Sincerely,

Peter V. Berns
Chief Executive Officer

Mentally disabled people campaigning on their own behalf
By Michael Alison Chandler
Washington Post Staff Writer
Thursday, February 4, 2010; 1:20 PM

A national movement to purge the word "retarded" from lawbooks and medical terminology is nearing success, gaining support this week from White House Chief of Staff Rahm Emanuel, who apologized to advocates for the disabled for using the term during a private meeting last summer.

The campaign is led in part by the mentally disabled themselves, who are increasingly politicized and eager to escape the stigma associated with the term.

"It's a time of change" said Jill Eglé, co-executive director at the Arc of Northern Virginia, a support group for the disabled, who spearheaded a campaign to change the state code in Virginia.

The words "retarded" or "retard" feel threatening, she said. Eglé identifies herself this way: "I am a powerful leader with an intellectual disability."

In Maryland, lawmakers voted last year to replace the term "mental retardation" throughout much of the legal code, and in the District, Virginia and 47 other states, politicians have acted to remove the words from the names of their human services agencies. This spring, Congress plans to consider a bill that would replace the words in all federal education, health and labor laws.

The 2010 professional manual that psychologists use for diagnosis makes the change in the medical label official: "Mental retardation" is out. "Intellectual disability" is in.

The change came after a decade of debate among social workers, psychologists and educators, and was voted down once by those concerned a new term would create confusion and cause some people to lose legal benefits. "It was continued impassioned pleas from self-advocates that made this happen," said Joanna Pierson, president of the American Association on Intellectual and Developmental Disabilities, formerly the American Association of Mental Retardation.

The shift in language casts the word "retarded" into a bin with more than a century's worth of discarded medical terms for the mentally disabled, including "idiot," "moron" and "feebleminded." The terminology provides an important function by connecting people to services such as special education and job assistance.

"A challenge in our field historically has been that whatever medical term we have used, a significant portion of the public uses it in a derogatory fashion," said Paul Marchand, staff director of disability policy collaboration for the Arc of the United States, which changed its name in 1992 from the Association of Retarded Citizens.

Some advocates argue that the long campaign to change the term has been a waste of time, because the lexicon of insults is likely to expand to include any new terms, and because it has distracted from more pressing needs such as employment assistance.
Growing clout

But for a new generation of people with intellectual disabilities, who are better educated and better organized, changing the language is priority number one. And their recent legislative successes are signaling their effectiveness as a political force.

Leadership opportunities have come slowly to people with intellectual disabilities. Campaigns against forced sterilization or institutionalization or exclusion from public schools have been led by family members or the professionals who work with them.

The nature of a disability that's historically been diagnosed for those with IQ test scores below 70 or 75 makes it harder to give speeches or debate issues. But an increasing number of people with intellectual disabilities are taking the microphone and setting up picket lines to stand up for themselves, following examples set by African Americans, women and other groups.

For example, on Martin Luther King Jr. Day in Richmond, a 27-year old man with Down syndrome addressed a crowd of Virginians with intellectual disabilities who had came to lobby their legislators for funding.

"The man we honor today reminded us that the dream of this great nation was not yet fulfilled for all its citizens. . . . He reminded us that America made a promise that all men would be guaranteed the right to life, liberty and the pursuit of happiness. Virginia, we have promises to keep and miles to go before we sleep," John Franklin Stephens said to shouts and applause.

Stephens, an aspiring screenwriter from Fairfax, had written the speech with help from his father and practiced it many times. Many with intellectual disabilities need support from a non-disabled mentor who can explain issues and help strategize. The number of organizations dedicated to training "self-advocates" has more than doubled in the past decade to about 2,000, according to estimates by the Research and Training Center on Community Living at the University of Minnesota.

As institutions have closed and the disabled are increasingly included in regular schools, people with intellectual disabilities are becoming increasingly articulate, self-confidant and ambitious. Some are attending adapted college programs. A small number, like Eglé, are pursuing professional careers with support from mentors, and are not relegated to low-end jobs. Many self-advocates are being invited to sit on commissions or nonprofit boards or to intern in state legislatures.

"Fifteen or 20 years ago, we were directing their lives," said Mary Lou Meccariello, executive director of the Arc of the District of Columbia. "Now they are directing their own lives."

In Maryland, self-advocates were instrumental in getting the Rosewood Center, a century-old institution in Owings Mills, to close last summer. In Minnesota, they waged a campaign to identify and mark thousands of gravestones outside institutions.

Nationally, they have helped escalate protests against R-word references in popular culture, such as the 2008 release of "Tropic Thunder," a movie laced with "retard" punch lines, and Emanuel's recently reported reference to liberals as "retarded."

Emanuel says he will join effort to stop use of 'retarded'

By Michael D. Shear, The Washington Post
Thursday, February 4, 2010; C02

White House Chief of Staff Rahm Emanuel apologized again Wednesday for using the word "retarded" during a private meeting last summer, telling advocates for the disabled that he will join their campaign to help end the use of the word.

The controversy over Emanuel's remark continued to dog the sometimes foul-mouthed senior Obama adviser despite his having privately apologized to Special Olympics Chief Executive Tim Shriver shortly after the comment was made public last week.

In a statement after an afternoon meeting at the White House, Shriver and five other disability rights advocates said Emanuel had "sincerely apologized" for the earlier comment during a strategy meeting, which was reported in the Wall Street Journal.

"We are happy that he will join more than 54,000 other Americans in pledging to end the use of the R-word at www.r-word.org, and that he committed that the administration would continue to look for ways to partner with us, including examining pending legislation in Congress to remove the R-word from federal law," they said in the statement.

An Emanuel aide declined to comment after the meeting.

The Wall Street Journal reported last week that Emanuel used the phrase "[expletive] retarded" during a meeting with liberal activists in August. In a letter to Emanuel on the day the article appeared, Shriver took the chief of staff to task for using a word that is considered insulting.

"I know that private political discourse can sometimes include profanity. But at the same time, our community cannot accept the idea that they will remain the butt of jokes and taunts," Shriver wrote. "I hope you will join us in changing the conversation and eliminating this word from your vocabulary."

Emanuel responded to the letter with a private apology to Shriver, which a White House aide said Tuesday had been accepted. That apology was first noted on an online site called Disability Scoop.

Controversy about Emanuel's use of the word erupted more broadly after former Alaska governor Sarah Palin called on President Obama to fire his chief of staff. In a statement on her Facebook page, she asked: "Are you capable of decency, Rahm Emanuel?"

The meeting at the White House included Shriver; Andrew Imparato, the president and chief executive of the American Association of People with Disabilities; Peter V. Berns, the chief executive of the Arc; and three advocates for disability rights. A spokeswoman for Shriver said Wednesday after the meeting that, "Tim accepted the apology."

The advocacy groups have launched a campaign at http://www.r-word.org to try to end the use of the word, which had until the early 1990s been in common usage. It is now seen as demeaning.

"Every day our community hears this word -- in schools and workplaces, in print and in movies, on radio and television," the statement read.

"And every day they suffer its dehumanizing effects -- mockery, stigma, ridicule. This is a word that is incredibly damaging -- not only to the seven million people with intellectual disabilities in the United States, but also their friends, family and to all of us."

The Arc of the United States has been invited to attend a meeting at the White House to discuss the recent controversy surrounding the Chief of Staff's use of the r-word.  Peter V. Berns, Chief Executive Officer, of The Arc will be attending along with other disability advocates and self-advocates, including:  Andy Imparato, American Association of People with Disabilities;  Hannah Jacobs, parent; Julie Petty, self-advocate; Tim Shriver, Special Olympics; and Ricardo Thornton, self-advocate.

The following is the text of a letter emailed to White House Chief of Staff on January 28, 2010:

January 28, 2010

Mr. Rahm Emanuel
Chief of Staff
The White House
1600 Pennsylvania Avenue, NW
Washington, D.C.  20050

Dear Mr. Emanuel:

It was deeply distressing to read news reports of your use of an epithet relating to people with intellectual and developmental disabilities.  Constituents of The Arc of the United States (The Arc), the nation’s oldest and largest organization promoting and protecting the human rights of people with intellectual and developmental disabilities and their families, are justifiably upset by the insensitivity to their struggle revealed by the use of this derogatory language.

This recent verbal miscue echoes President Obama’s unfortunate statement last year, on The Tonight Show with Jay Leno, equating his poor bowling performance with that of people with intellectual disabilities.  As disability rights advocates, we expected more from this Administration and presumed that the appointment of a Special Assistant to the President for Disability Policy was an assurance that the needs and concerns of people with intellectual and developmental disabilities would be understood and solidly represented.

Statements such as these emanating from the highest levels of government only intensify pervading societal attitudes that people with intellectual disabilities somehow don’t measure up—that their lives are worth less. 

The more than seven million Americans with intellectual and developmental disabilities and their families deserve a public apology for words that are the moral equivalent of hate speech.  This language is disrespectful and demeaning and further undermines the struggle for empowerment that this constituency faces on all fronts:  employment, education, housing, and inclusion in every aspect of society.

The Arc of the United States strongly supports legislation (S.2781) introduced by Sen. Barbara Mikulski of Maryland that would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities” in several federal statutes such as education and employment laws.  As advocates for people with intellectual disabilities, we are waging a battle to change hearts and minds and ensure that our constituency enjoys full inclusion and participation in the community.  The Arc hopes that the Obama Administration will offer vigorous support for this legislation, which if enacted will be a step forward in achieving these goals.

Thank you in advance for your consideration; we look forward to hearing from you.

Sincerely,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

The Pueblo Chieftan - By Nick Bonham

Agency that assumed custody of the victim critical of investigative agencies' slow responses.

The possible abuse and neglect of a 46-year-old man with Down syndrome is being investigated after he was found to weigh only 60 pounds discovered to be suffering from severe bed sores and a broken femur.

The Pueblo County Sheriff's Office is now investigating the case concerning Karl Martinez, who has been recovering in a local hospital since November.

The ARC of Pueblo was granted emergency guardianship at the time and is now Martinez's legal guardian.

"He was withdrawn, was so malnourished and the bed sores were horrific," said Stephanie Garcia, executive director of the ARC. "I'm happy to report he's gained 20 pounds."

Martinez had been living with a relative on Pueblo's East Side when neighbors reported suspicious activity at the home on Nov. 5.   Neighbors called 911 after they saw Martinez's relative carrying "what appeared to be a limp body to a vehicle," according to court documents obtained by The Pueblo Chieftain.

The body was first believed to be a dead dog, Garcia said, but was actually Martinez. Sheriff's deputies didn't respond because they were on other calls, the document said.

The court documents included a letter by Dr. Constance Wehling, who treated Martinez.

"This is truthfully the most severe case of neglect that I have encountered in 30 years of my medical practice, and I would encourage the legal system of this county to take an active role in giving him respect of life," Wehling wrote.

While Martinez is improving, Garcia said she's disappointed with the lack of progress in the case.

"I am disappointed, and I think what triggered my anger was the horrible reports of the animal abuse up north and how quickly people were brought to justice, and I just want that for Karl. I want Karl's offenders brought to justice," she said.

Garcia was referring to the recent incident in Park County, where 100 sled dogs were allegedly abused and malnourished and their owners arrested and charged.

Sheriff Kirk Taylor said investigative efforts had been dedicated to the December robbery-homicide of Robert Piserchio, which has netted arrests of seven suspects in Colorado Springs.

More resources have recently been dedicated to Martinez's case.

"The detective working with this has been tied up on the homicide," Taylor said in a recent interview. "No. 1: the stronger (Martinez) gets, the better witness he's going to be. He was only able to answer 'yes' or 'no' to questions."

"Carl's been saying the same thing from day one," about his alleged abuse, Garcia said. "And I told Kirk (that) Karl's voice is not being heard. As long as I'm around I'm going to jump up and down and scream until Karl's being paid attention to."

The Pueblo County Department of Social Services has had contact with Martinez dating back to at least 2007. Garcia said DSS knew of abuse against Martinez in 2007 after he collapsed at his home and was hospitalized for malnourishment.

Jose Mondragon, DSS director, said in a recent interview he couldn't talk about the case due to client confidentiality.

"(DSS) had gone out four times before because the neighbors were called and had reported concerns of Karl's well-being," Garcia said.

Taylor said DSS has not been cooperative or forthcoming with the investigation.

Capt. John McClure of the investigation unit at the sheriff's office  said the district attorney's office had reviewed the case and is awaiting more medical information before reaching a conclusion on whether charges will be filed.

"The DA has reviewed the case, and they need more specifics," McClure said.

January 27, 2010
Owning the Stage: Outlaws have audiences cheering
Susan Gray
Northeast Ledger correspondent – clarionledger.com

Sporting black skirts and sleeveless tops, the little cheerleaders strutted out in front of the audience at the Jackson Convention Complex.

"They pranced out there like they owned the stage," said Debbie Hartung, a proud parent, after the Outlaw Treasures' first performance late last year. "They were not scared at all."

Hartung's daughter, Savannah is a 9-year-old with Down syndrome. She is one of seven children with disabilities, ages 5-11, in the newly created cheerleading squad called Outlaw Treasures at Mississippi Cheerleading Academy in Flowood.

Debbie Hartung, of Flowood, fondly remembers Savannah at the top of a cheerleader pyramid, smiling and blowing kisses. Debbie also remembers the tears that were streaming down her face and her hands shaking so much she barely could hold the video camera.

"Oh my God! That's my baby up there, and she's doing it," she remembers thinking.

At first, a new parent of a child with disabilities grieves for the life experiences that child will not have, Debbie Hartung said. But her daughter's first performance gave her the feeling that, "Everything is OK."

Credit a newcomer who had no doubts.

Katie Hardy, a Memphis native, grew up with children with disabilities through her mother's work. After graduating from Delta State University in 2008, Hardy moved to Madison and became a cheerleading coach and tumbling instructor at the academy, where they train kids ages 3-19.

It's also home to the Outlaws.

She held a camp last summer and in September, the dream of several parents and little girls was realized.

"I knew they were perfectly capable of doing things that a non-disabled child would be able to do," said Hardy.

With some modifications, the routines basically are composed from elements of any competitive routine, Hardy said. The kids perform 2 1/2 minutes of tumbles, stunts, lifts in the air, jumps, cheers and lots of dancing.

"They love to dance," Hardy said. "They just come alive when the music comes on."

Hardy calls the girls a blessing. She loves to see their big hearts. And they have talent.

"It's a talent most people wouldn't realize that they would have," she said.

The Outlaw Treasures have their routine down pat, but it takes work. Practice is held twice a month for an hour, with Hardy getting a hand from veteran Outlaw cheerleaders and other coaches.

Anna Claire Kelly, a freshman at Rosa Scott High School in Madison, is a senior Outlaw squad member. She agrees that these children are capable. They just need "a little extra support," she said.

"Most of them know it by heart," Kelly said. "They know exactly where they are supposed to be."


Kelly spots the girls when they do stunts, making sure they don't fall, and she points them in the right direction if they need the help.

"They are so sweet," she said. "It is so fulfilling to see how happy cheering makes them. It's a great way to make a difference in someone else's life."

The Outlaw Treasures have performed three times, all in Jackson. On Saturday, they perform at the Tunica Convention Center.

So far, each of Savannah Hartung's performances have left her mother in tears.

"I cry every time I watch her," Debbie Hartung said. "It's a dream come true."

Savannah now does one more thing like her sister Sylvia, 12, also a member of the Outlaws.

"I try not to limit her by my fears," Debbie Hartung said. "I try not to ever say she can't until she tries, and then I usually find that she can."

That's pretty close to the advice given by The Arc of Mississippi, an advocacy organization for people of all ages with cognitive, intellectual and developmental disabilities and their families.

"Don't assume that because there is a disability that someone is not going to do certain things in life," said Cindy Dittus, associate director of The Arc and parent of a 31-year-old with Down syndrome. "Have high expectations.

"Allow a person the assumption of competence.

"Don't limit what you think they can do. They will surprise you."

Dittus travels across the state training and teaching disability awareness. Her bottom line: Look for their abilities, not their disabilities.

The Outlaw Treasures is a perfect example. It not only shows everyone else what these children can do, but it helps the girls in a significant way.

"It brings up their self-esteem and gives them a better self image," said Dittus. "It portrays a positive aspect of kids with disabilities."

Last year Savannah did tap and ballet, and has been in gymnastics about four years. Now, she's cheering.

"I have taken her to everything that her sister did, and every organization has found a way to make it happen," Debbie Hartung said.

"Being a cheerleader, for a little girl, is like being a princess. For her to get to do that, she has the opportunity to live her little dream like everybody else."

According to Hardy, the Outlaw Treasures is the only "unique needs" cheerleading squad in the Jackson Metro area but the second in the state.

The other is in Hattiesburg. For more information about the Mississippi Cheerleading Academy, the Outlaws or Outlaw Treasures cheerleading squads, call (601) 664-7077 or go online to www.mississippicheeracademy.com.

For information about The Arc of Mississippi, call (601) 982-1180 or go online to www.arcms.org.

January 23, 2010

Patient Money

State Ends Adult Mental Health Services at Milledgeville Hospital
By Craig Schneider
The Atlanta Journal-Constitution, 8:33 p.m. Wednesday, January 20, 2010

State officials said Wednesday they are shutting down adult mental health services at Central State Hospital in Milledgeville, the age-old hospital that symbolized the darkest days of psychiatric care in Georgia.

Yet even as Georgia discontinues this care at the 168-year-old facility, the state remains under fire from federal officials attacking the safety and treatment at the state's seven mental hospitals and demanding improvements.

Georgia faced a Jan. 15 deadline to be in substantial compliance with improvements laid out by the U.S. Justice Department, and state officials say they are awaiting the federal assessment on meeting that goal.

The sprawling ancient hospital had problems long ago and in recent times. The facility in the Macon area repeatedly has been the target of investigations by The Atlanta Journal-Constitution.

In November, federal officials found so many shortcomings at Central State, with patients attacking one another and receiving poor treatment, that state officials announced the facility would no longer accept new patients.

By Wednesday, the adult mental health population had dwindled from 95 in November to just 30 due to discharges. Officials, needing significant funding to renovate the aging facility, decided to simply move these 30 patients to other state hospitals. The goal is to shut down adult mental health services by March 1.

Some of Central State will survive. That includes about 150 patients in the forensic unit, which is comprised of patients assigned by the criminal courts who are considered mentally ill. A few hundred patients will remain in the units that serve a nursing home, as well as patients with mental retardation and other developmental disabilities. Two hundred employees will be transferred or laid off, said Tom Wilson, spokesman for the state Department of Behavioral Health and Developmental Disabilities.

The hospital stopped treating children last summer, Wilson said.

"If they can't keep patients safe at Milledgeville, then they have to find somewhere else," said Ellyn Jeager of Mental Health America of Georgia.

Advocates were worried the transfer of patients might cause overcrowding in other facilities, and that patients from the Milledgeville area might be moved away from their families and loved ones, which could hamper their recovery. State officials said the change will not create any overcrowding elsewhere.

For many Georgians, the hospital that opened in 1842 still strikes a fearful image, representing a time when society sent its unwanted or problematic people to an isolated location. The place many know only as "Milledgeville" has had its own fire department, ZIP code and huge cemetery. As it grew to a population of some 12,000 patients, it boasted the largest kitchen in the world.

In 1869, Berry Hall, an inexperienced attendant, became the first staff member killed by a patient, according to an Oct. 5, 1997, story in the AJC.

The hospital's creation was part of the 19th century's social reform movement. Mentally ill people often were hidden away in the homes of families or sent out to live in the street. Care at the hospital thrived in the mid-1800s as its leaders abolished such physical restraints as chains or ropes, according to the New Georgia Encyclopedia.

However, its population growth overwhelmed the staff, and such brute-force interventions as insulin shock and electroconvulsive therapy occurred in massive numbers, the encyclopedia said.

Thousands of patients were buried there with only numbered stakes as grave markers. In the 1960s, groundskeepers pulled up many stakes and tossed them aside to mow the lawn. In recent years, volunteers have conducted a cemetary restoration project.

In 1959, the hospital was the nation's largest mental institution, housing 12,500 patients. Jack Nelson's series in the AJC exposed the following facts: Only 48 doctors were on staff, and a dozen of them had alcohol or drug problems (several had been hired off the hospital's wards); doctors took money from pharmaceutical companies to try experimental drugs on patients, and other abuses.

Nelson's stories led to numerous reforms.

More recently, the AJC in 2007 pointed a harsh spotlight on the hospital in a series of stories that revealedsince 2002 that more than 100 patients had died under suspicious circumstances in the seven state mental hospitals.

The Justice Department has stayed focused on the inadequacies at Central State over the past year, sending state officials a series of letters detailing conditions that continue to endanger patients' safety.

Federal authorities said a recent visit to Central State confirmed that "grave harm continues to occur at the state psychiatric hospitals."

Josh Norris of the Georgia Advocacy Office said the state needs to move away from placing people in these hospitals and provide more community-based services. State mental health officials say they are heading in that direction.

But Jeager, the advocate, said the difficulty with that strategy is the same as it was 150 years ago: many people don't want facilities for mentally ill people in their neighborhood.

Big Differences Remain on Mo. Autism Coverage Bill

Advocates, insurance companies are many dollars apart on Missouri autism insurance proposals

Despite nearly a year of negotiations, big differences remain between insurers and advocates for autistic children who are urging Missouri to mandate coverage of a costly but promising behavioral therapy.

House and Senate committees each heard testimony Tuesday on proposals that would require insurers for small and mid-sized employers to offer policies covering the diagnosis and treatment of autistic children.

At issue is how much coverage should be offered — and how long it should last — for those seeking "applied behavioral analysis," an intensive therapy that some parents say produces dramatic improvements in their autistic children.

Advocates prefer a proposal that would require insurers to pay up to $72,000 annually for the treatment of people up to age 21. Insurance company lobbyists say that is too costly and lasts too long.

Blake Williamson, vice president and senior medical director for care management at Blue Cross and Blue Shield of Kansas City, suggested an alternative on Tuesday of providing up to $32,000 annually of coverage for children ages 3 through 7, with lesser coverage for older children.

Legislative committees took no immediate action on the proposals, though Gov. Jay Nixon and legislative leaders alike have declared that autism insurance legislation will be a priority for the 2010 session.

"This is not going to be rushed through," said Rep. Kevin Wilson, R-Neosho, chairman of the special House Committee on Health Insurance that is considering the bills. But he later added: "I think we can get to a bill that's fair to everyone and can get through the House and Senate."

Last year, the Senate passed legislation that would have required coverage of up to $55,000 annually for applied behavioral analysis for children younger than 15. But the bill never received a vote in the House, where Speaker Ron Richard appointed a special committee to study the issue further before the 2010 session.

Autism is a broad term used to describe a spectrum of neurological disorders that affect about 1 out of 110 children in the United States, according to the federal Centers for Disease Control and Prevention. The St. Louis region is near the forefront nationally, with an autism prevalence of about 1 in 83 children, said John Mantovani, the founder and medical director of St. John's Mercy Child Development Center in St. Louis.

The advocacy group Autism Speaks said 15 states already have laws requiring coverage of medically necessary autism services such as behavioral therapies. It funded an actuarial analysis last year by the consulting firm Oliver Wyman estimating an autism insurance requirement would result in a less than 1 percent increase in the cost of premiums in Missouri.

But insurers insist costs will be higher. Policies offered by Anthem BlueCross BlueShield of Missouri could have to rise by about 3 percent under the legislation favored by advocates, said lobbyist David Smith.

The proposed autism insurance mandate would apply to about 40 percent of the private insurance market in Missouri, primarily those covered through policies for small-to-medium-sized groups. Individual policies would have the option of including autism coverage. Larger group insurance plans often are self-funded and thus federally exempt from state insurance regulations.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

A Future Without Down Syndrome?
by Dana Goldstein, The Daily Beast – Blogs & Stories

With improved testing just a few years away, the number of secular, educated families affected by Down syndrome could plummet. Dana Goldstein talks to parents who hope that doesn’t happen.

“There was a time when I thought about Down syndrome nearly all the time,” blogger Maya Kukes wrote five years ago. “There wasn’t a day that I didn’t wake up, roll over and think, ‘My baby has Down syndrome.’ And yes, I was sad about it. I’ll go ahead and say that I was full-on depressed about it.”

Today, Kukes is more likely to brag about her son’s triumphs than fret about his limitations. Leo’s speech therapist reports that he’s developing “a sophisticated sense of humor.” He can sight-read half a dozen words. He’s protective of his 2-year old sister, Ellie, and loves to run. But when I call the 36-year-old editor at work to discuss the latest research on the genetic disorder that affects her son, she asks me to hold on for a second while she shuts her office door. A few minutes later, Kukes is choking back tears after I ask her if she ever gets the sense that other parents in her cohort—upper middle class, urban, highly educated—are wondering how, with all the genetic technology now available during pregnancy, she ended up with a child with Down syndrome?

“I would have wondered that, before, if I met someone like me,” she says. “I was never close to anyone who had any sort of handicap.” Kukes did get genetic screening, a blood test and ultrasound that showed her fetus was at a slightly heightened risk of Down syndrome. But doctors told her the more conclusive amniocentesis test carried a risk of miscarriage higher than the risk that her baby would be born disabled, so she opted out.

As emerging technology is expected within several years to allow pregnant women, for the first time, to test safely and conclusively for the disorder as early as the first trimester, a sense of responsibility—of having to provide a model of special-needs parenting—is growing among some college-educated parents dealing with Down syndrome.

Considering that several studies suggest as many as 90 percent of couples who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy, it’s possible—even probable—that this particular moment represents a demographic crossroads for Down syndrome, and that the number of secular, college-educated families affected by the condition is about to drop off steeply. Many parents raising children with the condition fervently hope that does not happen.

“I worry there won’t be a lot of kids with Down syndrome, and Leo will not have a large peer group,” Kukes says.

The new genetic technology—a blood test that will isolate fetal from maternal DNA, checking for the telltale 47th chromosome that marks the condition—could reverse an upward trend in the incidence of Down syndrome across the population. About 400,000 Americans now live with Down syndrome. According to a study published last month in the journal Pediatrics, between 1979 and 2003, the number of babies born with the condition increased from nine to about 12 per 10,000 births. The biggest reason for the shift was women waiting longer to have children; increased maternal age is the biggest known risk factor for the disorder.

In part because older parents tend to be well-educated and affluent, a vocal community of Down syndrome advocates arose. The result was increased visibility of people with Down syndrome in popular culture—think of movies like The Other Sister and TV shows like Life Goes On—as well as more funding for Down syndrome research and educational mainstreaming of disabled children. Medical advances also helped people with Down syndrome live longer, more productive lives, in large part through treating the heart problems that plague so many babies born with the condition.

Now advocates worry that more aggressive genetic testing could halt that progress, in part by relegating Down syndrome to groups already more likely to have children with the disorder, either because they are opposed to abortion or because they cannot afford the full range of prenatal care: Hispanics, the very religious, and the poor. Harold Pollack, a public-health expert at the University of Chicago, stresses that this hasn’t happened—at least not yet—in the United States. But a 2006 study in France found that Down syndrome was becoming more prevalent among certain disadvantaged socioeconomic groups that were less likely, for cultural reasons, to access prenatal testing.

“There’s a strong correlation between disability and poverty to begin with,” says Andrew Imparato, president of the American Association of People with Disabilities. “The concern we have is that once the children are born, will they have the supports they need for education and health and a positive life outcome? In low-income communities, the supports are not the same.”

Rachel Adams, a professor of English and American studies at Columbia University, is one of the special-needs parents whose ranks may dwindle in coming decades. She was studying the history of disability in popular culture for years before she gave birth to her son Henry, now 2. Still, learning her newborn had Down syndrome was “the biggest shock of my life,” she says. “A tremendous shock.”

Adams describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions—wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

Kukes says she doesn’t want other parents to pity her.

“I feel like a lot of times when I’m out with Leo, it’s my responsibility not to put a happy face on Down syndrome, but to show people that he’s not the end of the world,” she says. “When he was born, I did think it was the end of the world. But now I think he’s the best thing that ever happened to me. And I know it sounds cliché.”

Dana Goldstein is an associate editor and writer at The Daily Beast. Her work on politics, women’s issues, and education has appeared in The American Prospect, Slate, BusinessWeek, The New Republic, and The Nation.

Housing Advocates Settle Suit for Disabled Renters

GOP donor Alex Spanos' sons to pay millions in settling federal lawsuit for accessible housing

By GARANCE BURKE Associated Press Writer
FRESNO, Calif. January 13, 2010 (AP)

Thousands of renters with disabilities are poised to get extreme home makeovers thanks to a major settlement ending a federal lawsuit against a development company run by the sons of GOP donor and San Diego Chargers owner Alex Spanos.

The settlement announced Wednesday by the National Fair Housing Alliance will require the A.G. Spanos Companies to retrofit 82 apartment buildings in 14 states with wheelchair-friendly doorways, graded walkways and other improvements to ease access for the disabled.

The companies will pay about $7.4 million to rehab up to 12,300 rental apartments, and will set up a $4.2 million fund for disabled renters and homeowners across the country who want to redo their own homes, bringing the total cost to about $14 million, the housing advocacy group said.

"The A.G. Spanos Companies are proud to reach this agreement," Spanos' son Michael Spanos said in a statement. "(We) share the same goal: ensuring that people with disabilities enjoy equal access to housing."

The federal Fair Housing Act requires construction companies to build dwellings that are accessible to people with disabilities, and the lawsuit, filed in 2007 by five advocacy groups, accused the Spanos firms of failing to live up to the law.

Housing activists came across the problem after sending out a team of undercover agents to Spanos complexes in Georgia, Florida and California to masquerade as potential homebuyers. The team found dozens of doorways too narrow to accomodate wheelchairs and other design flaws that blocked access to the disabled.

"Sometimes you would find the kitchens were too narrow, in others you would find it was the bathroom, or sometimes accessibility issues in the parking lot," said Shanna Smith, president of the Washington, D.C.-based group. "We were pretty stunned that this was still such an issue in the United States.

During the negotiations, Smith said Michael Spanos met personally with civil rights groups and housing advocates. His father, Alex, one of the largest contributors to the 2004 campaign of George W. Bush, has retired from that aspect of the family business, attorney Michael Gurev said.

The total number of units that need rehabbing will likely be lower than 12,300, as will the retrofit cost, in part because the Stockton-based Spanos companies will try to recuperate some of the money from architects and designers, Gurev said.

The settlement was approved late last year by a U.S. District Court judge in Oakland, and the first payments to cover attorneys' fees and damages arrived a few weeks ago.

It is likely one of the largest of its kind, Smith said.

In comparison, the largest housing accessibility settlement brought by the Department of Justice applied to 5,400 units, said spokesman Alejandro Miyar.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

The Arc Mourns the Loss of Tim Quinn
January 12, 2010

It is with profound sadness that we learned of the passing of Timothy James Quinn, a much beloved member of The Arc family and Executive Director of The Arc Northern Chesapeake Region in Maryland. Tim lost his courageous battle against cancer on Sunday evening.

Tim was widely respected and fiercely admired for what everyone who knew him termed his visionary leadership and solid stewardship. Since 1990, he was at the helm of The Arc Northern Chesapeake, an organization he transformed from facility based services to support services. Among the many bold decisions he made was to be one of the first chapter executives to close their sheltered workshops by moving employees into integrated settings. Tim traveled throughout the country providing training on how this was accomplished and giving others the opportunity to build on his success.

As an activist, Tim was an authentic agent of change and his involvement in disability issues was evident on every level: national, state and local. He was a member of the Maryland Developmental Disabilities Council and served on the boards of several organizations including The Harford Leadership Academy, Family Partnership, and the Maryland Association of Resources for Families and Youth.

He was a past president of The Maryland Association of Community Services, and represented The Arc on the ADA Accessibility Guidelines Federal Advisory Committee. In 2009, Tim was the recipient of the Executive Excellence Award from The National Council of Executives of The Arc (NCE). Tim was considered a major force within NCE particularly on its training activities; his mentorship and leadership skills served the organization well.

All who knew and worked with Tim observed his deeply humanistic approach to his work, especially when working directly with people with intellectual disabilities and their families. The understanding, respect and integrity revealed in those relationships embodied the values he lived out in providing leadership to his chapter in Maryland and to his commitment to people with intellectual disabilities leading full and inclusive lives.

Tim’s colleagues at The Arc Northern Chesapeake Region noted that “Integrity, respect, community building, responsiveness, team, inclusion and self-determination are not just the core values of The Arc, but principles by which Tim lived his life.”

Memorial Details: 

Viewing on Wednesday, January 13 from 2:00 p.m. – 4:00 p.m. and from 7:00 p.m. – 9:00 p.m. at:

Ruck Towson Funeral Home
1050 York Road
Towson, Maryland   21204
Phone: 410-823-1700
Directions are available here:  http://www.ruckfuneralhomes.com/index.cfm

The funeral will be Thursday, January 14 at 10:00 a.m. at:

St. Joseph Parish, Cockeysville
100 Church Lane
Cockeysville, Maryland  21030                          
(410) 683-0600    
http://www.stjoseph-parish.org/

People with Disabilities Recover Benefits
By Catherine Whittenburg, Tampa Tribune
cwhittenburg@tampatrib.com

Thousands of Floridians with developmental disabilities will get another chance to fight state cuts to the services they rely on - even if the state denied their appeals last year.

That includes people like Peter Ciccarello, a 32-year-old Tampa resident who has spina bifida. Ciccarello, who lives with his mother and uses a wheelchair, lost dental care when the spending cuts took effect last year. The state denied his appeal of the cuts, and he now needs almost $7,000 worth of fillings and bridge work.

"This should be based upon the person's needs," he said.

It also includes Sean Mason, a 39-year-old Seffner resident diagnosed with autism, schizophrenia and intellectual disabilities. Yvonne Mason, his mother, has appealed a 42 percent cut in funding for services for her son, which she fears could cause him to wind up in an institution.

Ciccarello and Mason are among the 5,800 patients and families who protested their assignments last year to spending levels, or "tiers," which restrict how much the state will pay for services ranging from therapies to transportation.

In response to an order from the 1st District Court of Appeal, the state Agency for Persons with Disabilities is now tweaking its rules for assigning people to those tiers and re-evaluating the cases of everyone who appealed in 2009. If they wish, they will be able to appeal again when the state reassigns them to a spending tier later this year.

Unlike last year, everyone also will get to make their case - first in an informal hearing with APD staff, and if necessary, before an administrative law judge, APD director Jim DeBeaugrine said.

The agency denied hearings last year to the majority of people who appealed, finding their complaints "legally insufficient." That sparked protests from families, as well as a legal challenge from the Advocacy Center for Persons with Disabilities.

"We don't anticipate denying them this time," DeBeaugrine said.

Those may not be the only changes ahead.

Even as the Agency for Persons with Disabilities struggles to bring its current system into compliance with the court's order, it is also working on a new plan to change the way Florida serves people with developmental disabilities in the future.

"We're committed to getting this right," DeBeaugrine said.

iBudgeting?

The state Legislature designed the tier program in 2007, when APD had a budget deficit of about $155 million. Lawmakers responded by demanding that the agency cut spending on services and divide the 30,000 beneficiaries of the agency's Home and Community Based Services program into spending tiers.

That sent waves of fear and anger through families of the developmentally disabled, as well as the providers paid to care for them. From a purely cost-cutting perspective, the changes largely succeeded. As of last week, the agency had whittled its projected deficit for 2010 down to $26 million.

"I think it was the right decision at the time; there wasn't really any other decision to be made," said state Sen. Durell Peaden, who oversees health and human services spending in the Senate.

Because of the way the cuts were structured, their impacts varied widely. Many people experienced little or no change in services, but others lost as much as half when they were assigned to a tier.

That's one of the problems that DeBeaugrine said he hopes to solve, by moving to a system of "individualized budgeting."

The "iBudget" idea, he said, is to create a computerized algorithm to evaluate the needs of each person, based on a wide variety of factors ranging from their age to their ability to clean themselves.

The computer program would use the information to calculate a customized budget for each person. Families would have significantly more control over how they spend the dollars allotted to them for services than they have under the current system.

If lawmakers approve iBudget this spring, it could take effect statewide as early as 2011.

That sounds better, said Yvonne Mason, Sean's 70-year-old mother and caregiver, but only if the state gets its calculations right. She is concerned that the state will not take into account enough variables - for example, the age of parents who are caregivers for people with developmental disabilities. "That makes a big difference in the care of a person."

It will be up to lawmakers this spring to approve or reject the proposal, just as they will decide how much to spend on services for the disabled in a year when the state faces a budget deficit of more than $2.5 billion.

Peaden, of Crestview, said he hopes to minimize the budget cuts to APD, given the reductions it has already weathered. As for iBudget, "I'm willing to look at anything that maximizes the services they need and cap what they don't," Peaden said. "This is one of the toughest issues we face up here."

Remarks at Lorraine Sheehan’s Memorial Service – 1/6/2010
PAUL MARCHAND, Staff Director, Disability Policy Collaboration of
The Arc and UCP

NEWS MEDIA ADVISORY FOR FRIDAY JANUARY 8, 2010

VIRGINIA SENATE FINANCE COMMITTEE BUDGET HEARING: DISABILTY ADVOCATES GATHER TO “STOP THE ASSAULT ON HOME AND COMMUNITY BASED SUPPORTS!”

Friday, January 8, 2010, 10:00 a.m., Northern Virginia Community College- Annandale Campus, Ernst Center, 8333 Little River Turnpike Annandale, VA 22003-3796

The Arc of Northern Virginia and over 300 advocates for people with disabilities plan to testify in response proposed cuts to services in Governor Kaine’s 2010-2012 Budget Proposal. The outgoing Governor’s budget proposal is being called “An Assault on Home and Community Based Services in Virginia” according to individuals, family members and providers for people with developmental disabilities.

On Friday, December 18, 2009, Governor Kaine released his budget proposal for the 2010-2012 Biennium, as well as his amendments to the budget for FY09. These budget proposals contain drastic cuts to services for people with intellectual and developmental disabilities. The proposal cuts more than $100 million worth of ID/DD services and more than $270 across all of the Home and Community Based Waivers (Elderly and Disabled, ID, DD, HIV/AIDS, Technology Assisted). The proposed budget essentially guts an already under-funded system that currently ranks 46^th nationally in its use of Medicaid dollars in the community.

At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to build a NEW, 75-bed, state-operated institution in Chesapeake, VA. The proposed rebuilding of this institution represents a major retreat from forty years of state public policy supporting the move to home and community-based supports; and caring for these 75 residents will cost, on average, three times what it would cost to serve a person who meets the same level of need for services in the community.

Advocates will join together to let decision makers know that investing dollars in building community supports for people with disabilities is the fiscally and morally responsible decision to make in this difficult budget climate. Nancy Mercer, Executive Director for The Arc of Northern Virginia states: “We can not go backwards and spend our limited resources in re-building institutions to care for people with disabilities…to be honest Virginia can not afford to build an institution big enough to hold everyone who is in need of services at an average annual cost of $194,000 per person.”

Speakers at the Virginia Budget Hearing will include:

• Individuals with disabilities
• Family Members
• Community Leaders
  
  NEWS MEDIA CONTACT: For The Arc of Northern Virginia: Nancy Mercer, Tel: 703-532-3214 ext. 106 or cell 703-304-8537, nmercer@thearcofnova.org 

East Brunswick man with autism, controversial advocate nominated to federal council
By Karen Keller/The Newark Star-Ledger
January 05, 2010, 6:17AM

Lorraine Sheehan: Honoring an Extraordinary Life

On Wednesday, January 6, a “Celebration of an Extraordinary Life!” honoring Lorraine Sheehan will be held at the Annapolis Loews Hotel Ballroom at 1:30 p.m. Lorraine passed away on December 19 and was an indefatigable disability rights advocate and a treasured member of The Arc family. 

Paul Marchand, Staff Director of the Disability Policy Collaboration is among those who will pay tribute to Lorraine. Other speakers include former Maryland Governor Harry Hughes, elected officials and dignitaries, friends and neighbors and advocates.

Lorraine was an active member of The Arc for many years—serving as President of The Arc of the United States, The Arc of Maryland, and The Arc of the Central Chesapeake Region. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, she had been currently serving as the Co-Chair of the DPC Steering Committee.

Please RSVP to sharris@thearcmd.org or to The Arc of Maryland at 410-974-6139 if you plan to attend the “Celebration of an Extraordinary Life!” You are also invited to share your recollections, pictures and stories on Lorraine’s Facebook at: facebook.com/lorrainemsheehan

In lieu of flowers, donations may be made to:

Lorraine M. Sheehan, 72; fought for rights of disabled
By T. Rees Shapiro – Washington Post
Thursday, December 24, 2009; B06

Lorraine M. Sheehan, 72, a former Maryland secretary of state who championed the rights of people with disabilities, died Dec. 19 at Johns Hopkins University Hospital in Baltimore.

She died of complications from cystic fibrosis. She had been an Edgewater resident for 26 years.

Mrs. Sheehan, a Democrat, served as a Prince George's County state delegate from 1974 to 1983, when Gov. Harry R. Hughes chose her to be secretary of state. At the time she was the third woman to serve in that capacity since the position's creation in 1838.

"Women who have for so long been the backbone of political campaigns are now deciding that they want a piece of the action," Mrs. Sheehan told The Washington Post in 1980. "It takes a tremendous ego to run for public office. . . . A person has to stand up before a group with the attitude: 'I'm the best person for this job.' A lot of women don't perceive themselves as being that kind of person. They don't want to get up on the platform and say: 'Look, I'm smart. I know where we ought to be going, and I can help to get us there.'

Mrs. Sheehan's biggest focus while in the House of Delegates was the creation and funding of programs for people with disabilities. Her son John was born with mental disabilities and was later found to have autism. She introduced the first bill addressing the state Developmental Disabilities Administration's waiting list for residents eligible for service, which Mrs. Sheehan said was too long and underfunded.

A bespectacled, spunky woman who was known to wear ponchos and colored stockings, Mrs. Sheehan was recognized for her public service in 2002 when she was inducted into the Maryland Women's Hall of Fame.

Lorraine Marie Cantin, a native of Manchester, N.H., moved to the Washington area in the mid-1960s. As a delegate, Mrs. Sheehan served on the House Judiciary Committee and the House Ways and Means Committee. She resigned as secretary of state in 1987. Shortly after, she joined Melwood, a nonprofit organization in Upper Marlboro that provides housing, job training and employment opportunities for people with intellectual and developmental disabilities.

In the mid-1990s, Mrs. Sheehan became the public policy director for the Baltimore-based Maryland Disability Law Center and also had a private business as a lobbyist in Annapolis for organizations and issues involving disability rights. For many years, she served as the president of what is now known as The ARC of the United States, a community-based organization for the developmentally disabled.

Her marriage to Peter Sheehan ended in divorce. Besides her son John, of Edgewater, survivors include three children, Peter Sheehan of Hedgesville, W.Va., Niall Sheehan of Laurel and Laura Carr of Edgewater; and seven grandchildren.

When John, now 43, was found to have autism, Mrs. Sheehan refused to institutionalize him as his doctors and educators had suggested. Instead, she crafted legislation in the House of Delegates that would help those with disabilities live on their own in decent housing. Many years ago, Mrs. Sheehan set up a trust to pay for her son's expenses so he could remain in the house where he grew up, in the neighborhood where everyone knows his name.

"Nobody wants to think they are going to die," Mrs. Sheehan told the Baltimore Sun last year. "But it certainly is a relief and comfort to know you . . . have a fighting chance to keep John happy as he is now."

Click here to read obituary in the Baltimore Sun http://www.baltimoresun.com/news/obituaries/bal-md.ob.sheehan24dec24,0,3659931.story

The Arc Mourns the Loss of Lorraine Sheehan

It is with great sadness that The Arc of the United States announces the passing of Lorraine Sheehan. Lorraine died on Saturday, December 19 after a long struggle against pneumonia, compromised by cystic fibrosis. Lorraine was an indefatigable disability rights advocate and a treasured member of The Arc family. She has been an active member of The Arc for many years—serving as a member of The Arc of Prince George's County, and as Past President of The Arc of the United States. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, Lorraine was President of The Arc of Anne Arundel County, and Government Affairs Chair and President for The Arc of Maryland.  She had been currently serving as the Co-Chair of the DPC Steering Committee.

Lorraine Sheehan grew up in New Hampshire and moved to Maryland with her husband and family in 1965.  She has four children and six grandchildren.  At an early age, her third child, John, was diagnosed as deaf and “mentally retarded.”  Later, he was diagnosed with autism and determined not to be deaf.  John has significant disabilities and lived at home with Lorraine in Edgewater, MD.

Because of John and his special needs – especially related to his schooling – Lorraine became involved in the disability movement.  She focused her attention on independent living opportunities for individuals with disabilities and later on advocacy on behalf of individuals with disabilities and their families.  It was her passion for advocacy that led to her emerging as one of Maryland’s leading advocates for individuals with disabilities.

Indeed, she became one of the nation’s most powerful voices for our constituency, due in no small part to her profound commitment, keen intelligence and charismatic presence.

In 1974, Lorraine was elected to the MD House of Delegates, where she served for nine years. In the General Assembly, she introduced bills on transportation for students with disabilities and the first bill ever addressing the Developmental Disabilities Administration's waiting list.  In 1983, Governor Harry Hughes appointed her Secretary of State of Maryland for one four-year term.

Because of her expertise in the area of disabilities, Lorraine was appointed a Commissioner to the Anne Arundel County Housing Authority.  She continued to focus much of her work on independent housing for people with disabilities, ensuring that even individuals with the most significant disabilities have an opportunity to choose where they live.

As a public official, she educated other policymakers and the public at large while helping to transform communities into places of inclusion. As a parent, she waged a tireless fight for the rights of people with disabilities and their families. Lorraine mentored many family members and professionals.

Professionally, Lorraine went on to be named the Public Policy Director for the Maryland Disability Law Center; she also worked with the Public Sector Consulting Group. She continued to volunteer her time and expertise, by serving on boards and committees charged with improving the lives of individuals with disabilities. Lorraine will be greatly missed – she was a true force in advancing the rights of people with intellectual and developmental disabilities.

Peter V. Berns
Chief Executive Officer

If you would like to send condolences:

Joan Scott (Lorraine’s housemate and dear friend)

108 Park Avenue

Edgewater, MD 21037

John Sheehan (Lorraine’s son)

108 Park Avenue

Edgewater, MD 21037

(It would not be inappropriate to send one card addressed to both Joan and John)

Laura Carr (Lorraine’s daughter)

2923 Edgewater Drive

Edgewater, MD 21037

The family has requested donations in lieu of flowers be made to:

The Arc of the Central Chesapeake Region

931 Spa Road

President Obama announced individuals to participate in key administration posts.  One of those individuals was Chester Alonzo Finn, a board member for The Arc of the United States.

From the announcement:

No way to refer to the vulnerable
By Randolph Siegel
December 18, 2009

Imagine a prominent magazine, winner of a National Magazine Award for "general excellence," publishing a column that makes fun of developmentally delayed children. Or an Emmy Award-winning comedy show in which a leading character has sex with a mentally disabled woman and then mocks her disability. Or a popular Web site, with 3 million monthly visitors, that has more than 600 cruel references to "retard" on its site. No need to use your imagination, because these are just three examples of how the media elite too often ridicule the millions of Americans who are cognitively impaired due to debilitating brain disease or injury.

As a member of the media who has a developmentally disabled child, I cringe when I see snark like this from New York magazine savaging an interview with the actor Alec Baldwin in Parade magazine: "The whole thing reads like it was As Told To a slow third-grader with vocabulary issues. ... This thing sounds like the dumb-Charly (sic) parts of 'Flowers for Algernon.' "

Or this season's episode of HBO's "Curb Your Enthusiasm" in which Larry David's sidekick, Jeff, seduces a mentally disabled character and then belittles his victim after she speaks out.

Or headlines on the popular Gawker site such as "Retard Homo Newspapers Scared of Awesome Commenters!" or "Retard Nude Harvard Porn Kid: Worth Your Vomit?" surrounded by ads from some of America's largest advertisers.

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a "retard" until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development. It's been a painful, frustrating journey for us. Millions of other American families have experienced similar shattered dreams, with a neurologically damaged child, parent or friend -- or someone they love who has returned home from Iraq or Afghanistan with a traumatic brain injury. Over the years, I've bit my tongue whenever I hear "retard jokes" at business functions -- or see a movie like DreamWorks' "Tropic Thunder" in which "retards" are vulgarly disparaged in a lame effort to generate laughs -- or hear a song like the Black Eyed Peas hit single "Let's Get Retarded." Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on "The Tonight Show with Jay Leno", I tried to internalize the pain. But that's a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it's time -- now more than ever -- for their families and friends to help them fight back.

Randy Siegel is president of Parade Publications.
Copyright © 2009, Chicago Tribune

December 16th, 2009 – United Feature Syndicate

A CLASS Act Deserves Support

By Cokie Roberts and Steven V. Roberts

We are the lucky ones. Not only are we blessed with two mothers in their nineties—we are doubly blessed with mothers whose resources cover their care. That’s not the norm in America, where the aging population’s need for long term care imposes harsh economic as well as emotional stress on many families. A provision of the health care bill aims to offer some relief to those families and we’re all for it.

The Community Living Assistance Services and Supports Act, called CLASS, was one of Teddy Kennedy’s pet proposals in recent years. It’s a pretty simple idea. Workers would voluntarily pay into a fund for at least five years and then be able to draw out from it if they become disabled by age or illness. A daily stipend tied to the degree of disability, to be set by the Secretary of HHS but probably starting at about $75, would go for whatever was needed—someone helping out at home, transportation to senior day care, installation of handicap friendly devices—allowing many individuals to remain in their communities and out of costly nursing homes.

For people who aren’t as lucky as we are, that’s often the only choice. Their parents, or a disabled brother, might need assistance in eating, bathing, dressing or moving from a chair to the bathroom. A small stipend can make all of the difference. It can mean an elderly person can stay at home with some assistance getting dressed and fed. It can mean family caretakers can keep their jobs if someone can cover for them at home in the hours they are away from a live-in parent.

The Huffington Post – 12/17/09
Funding Cuts May Close Group Homes In NC

Group homes for people with developmental disabilities in North Carolina are in danger of closing after the state reduced funding, reports Dwight Otwell for the Cherokee County Scout. Funding was cut to help fix a statewide budget crisis. "[The homes] are having to rethink every sheet of paper they use," said Yvonne Trent, a social worker in Cherokee County.

In Unaka, N.C., 12 men and women with learning and developmental disabilities live in Autumn Halls, a group home owned and operated by Will Hayes and his daughter, Shelly Debty. "If we can't take care of [the residents] and feed them I would rather shut the doors," said Hayes, who often works 18-hour days to make up for staff whose hours have been cut back. "We have had to scale back on everything a little bit at a time," Debty told the Scout. "If we closed I don't know where [the residents] would go."
http://www.huffingtonpost.com/2009/12/17/funding-cuts-may-shutter_n_395641.html

Friday, Dec. 4, 2009
Maryland loses $3 million in federal aid
Advocates worry about waiting list for disabled; hearing set for Tuesday
by Sean R. Sedam | Staff Writer – Gazette.net

An ongoing makeover to a list of developmentally disabled individuals waiting for state services has advocates fearing that people in need, some of whom have waited two decades, will be removed from the roll.

The Developmental Disabilities Administration is conducting a review to determine which individuals on the list are in most urgent need of services.

"It's our understanding that a large number of people will be taken off the list," said Laura Howell, executive director of the Maryland Association of Community Services.

That worries service providers, said Cristine Marchand, executive director of The Arc of Maryland.

When individuals come off the list "they disappear," she said. "And they're the silent majority."

The agency's review of the list, which had grown by May to include 18,928 names, was described in a 45-page audit report released Tuesday.

State auditors found that the agency did not claim $3 million in federal reimbursements that Maryland was eligible to receive and failed to recoup $3.6 million that it overpaid to service providers.

The audit also found that the disabilities administration paid contractors for services for people who had died, did not properly track Medicaid eligibility and had inadequate data systems in place that compromised security.

The legislature's Joint Audit Committee will hold a hearing on the audit at 1 p.m. Tuesday in Annapolis.

DDA Executive Director Michael S. Chapman declined to comment on details of the audit report until after the hearing, but said that the agency welcomed the scrutiny, even if it did not agree with all 14 findings.

The agency, in a response to the audit findings, said it could not recoup $911,000 of the federal reimbursement because of a two-year statute of limitations for claims. DDA was able to recover more than $546,000, according to the response.

Despite the millions that auditors claim DDA left on the table at a time when services for the disabled have been slashed by $29 million this year alone, advocates said that their worry lies more with the future of the waiting list.

The agency began sending letters to families on the waiting list in October 2008 in order to assess their needs, Chapman said. The agency plans to complete its review by April.

Caroline Munro, 15, has been on the waiting list since October 1999. With cerebral palsy and mental disabilities she is nonverbal and wheelchair-bound.

Her mother, Beth Munro, would like DDA funding for a roll-in shower in their Rockville home. But it cannot be installed unless square footage is added to the bathroom, something DDA will not pay for and Munro cannot afford.

Other services, such as access to an after-school program, could have made it possible for Munro to work full time. As a single mother, she needs to be home when Caroline returns from Richard Montgomery High School.

"I think about what our lives could've been like had we had supports, particularly, just respite," she said. "Perhaps I would've been able to afford to do some of the home modifications myself."

From McKnight's Long Term Care News:

An attempt to kill off the Community Living Assistance Supports and Services (CLASS) Act was thwarted Friday.

The long-term care and disability insurance program remained in the Senate healthcare bill Friday afternoon as the Senate voted 51-47 to defeat an amendment proposed by Sen. John Thune (R-SD). According to the Senate's Web site, the Thune amendment would “eliminate new entitlement programs and limit the government control over the health care of American families.” The amendment considered the CLASS Act, which would pay out a benefit to enrollees in the event of a disability, an entitlement program. The CLASS Act would reduce the deficit by $72 billion from 2010 to 2019, according to the Senate bill. The total bill is projected to reduce the deficit by $130 billion during that time.

As of press time, Sen. Ben Nelson (D-NE) had not yet introduced an amendment similar to Thune's that would remove the CLASS Act from the Senate bill.

The NonProfitTimes - December 1, 2009
Car Donation Programs Rev-up, Some Are Clunkers
By Tom Pope

The Arc of the United States (ARC) is defying the trend of slacking activity in car donation programs. The 60-year-old civil rights organization just started a car program about a year ago while other programs face 30-percent declines from the economy.

“We’re beginning to see some growth with 90 chapters that are bringing in 30 cars a month totally,” said Trudy Jacobson, chief development and marketing officer for The Arc.

Not all chapters have that much success, and only 10 are fully active. “The Twin Cites had 22 cars in 15 days and that shows us the potential,” she said.

ARC represents people with intellectual and development disabilities through 730 local grassroots chapters.

Jacobson said the economy was partly responsible for donors in general slowing down their car contributions. “If you follow all the IRS guidelines, you have to have a donor in a certain tax bracket with a car at a certain level to gain a deduction,” she said.

ARC is “winning no matter what,” she said. It works with another nonprofit that manages the operation and handles the IRS paperwork.

The nonprofit manager has the staff for a plug and play program with an 800 number so anyone across the county can call and immediately be placed in a call center that feeds the information to the local level.

The Internal Revenue Service (IRS) became an obstacle to donors in 2004 when the American Jobs Creation Act changed the rules for contributions of vehicles. Before January 1, 2005, donors could claim a deduction equal to the fair market value. With the law, donors can only deduct the amount of the sold vehicle. Car donations got on the government’s hit list because it found examples of large discrepancies between a market value and actual sales price. According to the IRS, amounts donors claimed for these gifts dropped by more than 80 percent between 2004 and 2005. According to the IRS’s Statistics of Income Bulletin of Summer 2009 and the Spring 2008 car donations were 297,000 in 2006, down from 900,891 in 2005.

“We know we’re following the cleanest way to deal with the IRS,” Jacobson said.

ARC uses the Melwood Training Center, in Upper Marlboro, Md., to operate the functions. Melwood, a job training nonprofit, operates a donation program in the Washington, D.C. area. 

“Melwood makes sure the donor gets the IRS paper work Schedule 1040 and the Form 8283, which has to be attached,” she said. “We’d prefer to make less money as long as we make sure all the forms are correct.”

Other vendors might not provide the paperwork. “Many programs might not be aware of the IRS paperwork,” she said. “When a bill of sale goes through, the manager sends back the paperwork so donors know exactly what is needed to be sent.”

ARC has set rates through Melwood of a flat fee of $75 per car to pick up and manage the operation. This differs from most vending contracts that allow outside vendors to manage the operation. “We get approached from other vendors and those costs are so much higher that the chapters couldn’t afford it,” she said. “Anything in a percentage basis wouldn’t be in the donor’s interest.”

The current law allows donors to continue with a deduction of the fair market value if the charity uses the vehicle before selling it, fixes it before the sale, or gives it to a needy individual.

Such restrictions resulted in a 38-percent drop in cars for 2005 for Volunteers of America (VoA), based in Alexandria, Va. The program that handled about 80,000 cars in 2004 now gets 25,000 cars a year.

“We haven’t had a rebound from that time,” said Jim Hartman, vice president of Enterprise Programs for VoA. “From ‘07 we’re down about 12 percent.”

The federal Cash for Clunkers Program took approximately 677,000 cars off the road, according to The IRS. “Those were our typical donations,” he said. “We think there will be a six- to 12-month impact because those people who would have bought a new car were the ideal donors.”

Car donation programs depend on a high quality car that makes up for those fit only for the scrap heap. Those cars were donated because of the tax deduction.

“Now sometimes the quality isn’t there so that the towing and the cost of selling the vehicle becomes an obstacle,” he said. Add to that the problem that the price for salvage has plummeted for the past three years. “We were getting $600 for salvage and salvage guys were coming to the auction bidding against each other,” he said. “Now that has softened a bit and the same cars are bringing in only $100 to $200.”

VoA runs auctions and other times goes through auction houses. Those places are suffering too, according to Hartman. The shortage of cars going to the auction because of the clunker program means that 677,000 used car trades will not filter down to the auctions.

“We continue to advertise aggressively,” he said. “We want to counter balance the bad economy, although it’s a complicated balance between spending and keeping the program running.”

The Society of St. Vincent de Paul in New York City is evolving into a national program. “We’re trying to advertise more instead of being an independent program,” said Munaa Shariff, transportation program manager for the Atlanta Council. “Next year we hope to have more television ads because the small independent organizations can’t afford to do much.”

The Atlanta Council handles about 120 cars a year, down about 40 percent from when the changes went into effect.

“We don’t have an online program,” she said. “With the national effort, we will have more online ability and third party help.”

Presently, the outreach happens through small newspapers. Targeting the demographic to find the higher quality car doesn’t work well. “We have tried to use demographics to get better cars with our database,” she said. “We do not see any pattern outside of people in the suburbs.”

While many programs are shuffling to survive, Kars-4-Kids in Lakewood, N.J., has seen a sharp increase in donation during the past four years.

“That could be because we have grown now to 49 states,” said Clifford Meth, vice president of communications for the nonprofit. “We’re stronger in states with more affluent areas.”

Places with a higher unemployment usually means that people are holding on to their cars.

Kars anticipated a negative impact from Cash for Clunkers. “We didn’t see a drop off,” he said. “There has been almost a zero impact although it could hit in some months.”

The guarantee of a $500 deduction for donors means something to many people, according to Meth. “This comes down to a donor who has a vehicle in the driveway who is thinking about giving it away or has a rust bucket taking up space,” he said. “Instead, they could have a vacation voucher and feel good by donating.”

Kars’ increase has been steady during the past 10 years with more than a 10 percent rise a year for the past four years.

“Car donation is still a viable way for a charity,” he said. “We’re giving people the opportunity to be part of the giving of America -- that old car that is a pain in the neck could help a charity.

A plea for the most vulnerable

Tuesday, December 01, 2009
Matt Fair - STAFF WRITER

baltimoresun.com
U.S. government should stop using the word 'retarded'
By Peter V. Berns
November 29, 2009

Does terminology matter? Turns out it matters quite a lot, especially if it's about a person's intellectual disability.

This is why the U.S. Senate is considering a bill to replace the term "mental retardation" and "mentally retarded" with "intellectual disability" and "individual with an intellectual disability" in federal health, education and labor policy statutes. Sen. Barbara Mikulski, Democrat of Maryland, introduced "Rosa's Law" on Nov. 17. Senator Mikulski's bipartisan bill would have far-reaching effects because the term is used to establish eligibility for many federal benefits and services.

The bill is very important for people with intellectual disabilities, who understand that language plays a crucial role in how they are perceived and treated in society.

Unfortunately, there is a lengthy history of oppression, mistreatment and abuse of our citizens with limited intellectual functioning. People with intellectual disabilities have been imprisoned in institutions, suffered forced sterilization and have often been - and continue to be - excluded from schools, the workplace and society at large. The medical terms that have, historically, been used to describe them (imbecile, moron, idiot, and currently, mentally retarded) have become common terms of derision and ridicule.

Sadly, the same general enlightenment that now mostly spares racial and ethnic minorities from the cruelty of pejorative words has not yet been attained as it relates to people with intellectual disabilities. It is no longer socially acceptable to mock people of African-American, Latino or Asian descent, for example. But the words "retard" and "retarded" are still widely used and accepted as an insult in our homes and schoolyards and on our movie and TV screens.

Maybe people are simply unaware that intellectual disabilities result from genetics, prenatal alcohol exposure, poor nutrition, injury, illness and other unknown causes. Or could the public at large be so callous that they don't care that people with intellectual disabilities are hurt and shamed by demeaning references? Is there fundamental disregard for the well being of people with intellectual disabilities worldwide?

Perhaps people are not aware of how children with Down syndrome in some countries are tied to their beds for years in filthy institutions (also true in the U.S. for decades until the 1970s); that an estimated 80 percent of girls and women in this country with intellectual disabilities are sexually assaulted; and that the testimony of crime victims - in rare instances of reporting and prosecution - often is dismissed because of intellectual disability.
We must stand up for our citizens with intellectual disabilities. Senator Mikulski's bill is a necessary step to help stop the use of degrading terminology. By introducing the word "disability" into the parlance, perhaps the global society will begin to understand the legitimacy of the condition and treat those living with it in a just and humane manner.

Peter V. Berns, a Baltimore resident, is executive director of The Arc of the United States.Copyright © 2009, The Baltimore Sun

Los Angeles Times - Health

November 19, 2009 | 11:19 am

What’s In a Name? Legislation Would End Use of the Term “Mental Retardation”

We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.

The proposed measure would replace those terms with "intellectual disability" and "individual with an intellectual disability."

The Arc of the United States — the nation's largest and most active advocacy group for those with intellectual and related developmental disabilities — calls the terms "mental retardation" and "mentally retarded" "outdated" and "stigmatizing." The group applauds the measure, which was proposed by Sen. Barbara A. Mikulski (D-Md.), and says it's high time that federal language was updated.

" 'Retard,' 'retarded' and 'retardation,' once accepted medical terms, are now used only to insult and demean people," said Peter V. Berns, chief executive of the Arc, in a statement supporting Mikulski's proposal. He added, "Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil rights."

The Centers for Disease Control and Prevention already use the updated term, as does the Office of the President — to which the Committee for People With Intellectual Disabilities reports. But some landmark laws — including the Individuals With Disabilities Education Act (IDEA), the Higher Education Act and the law known as No Child Left Behind — still use the terms.

The measure replicates a law recently passed by the Maryland State Assembly. As they deliberated, state lawmakers heard from 13-year-old Nick Marcellino, whose sister, Rosa, has an intellectual disability. "Some say we shouldn't worry about the words, just the way we treat people. But when you think about it, what you call people is how we treat them. If we change the words, maybe it'll be the start of a new attitude toward people with intellectual disabilities."

Mikulski has dubbed her measure Rosa's Law, in honor of Nick's sister.

There are 7 million people living with intellectual and/or developmental disabilities in the United States, and the origins of their disabilities are legion, ranging from birth injury, illness, genetic defect (a term that some may also challenge) and environmental factors. A recent post here at Booster Shots talked about a raft of medications now under study in the treatment of Down syndrome and about a survey that found that 60% of parents of offspring with the disorder would likely take a pass on such a treatment if it became available.

So, is it political correctness run amok, or is it a group's right of self-determination to stipulate (by law, no less) how they should be referred to? There are plenty of precedents to point to. But some will resist being dictated to when it comes to language.

— Melissa Healy

The Short Life of a Diagnosis
By SIMON BARON-COHEN
Published: November 9, 2009, The New York Times

THE Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is the bible of diagnosis in psychiatry, and is used not just by doctors around the world but also by health insurers.


Changing any such central document is complicated. It should therefore come as no surprise that a committee of experts charged with revising the manual has caused consternation by considering removing Asperger syndrome from the next edition, scheduled to appear in 2012. The committee argues that the syndrome should be deleted because there is no clear separation between it and its close neighbor, autism.

The experts propose that both conditions should be subsumed under the term “autism spectrum disorder,” with individuals differentiated by levels of severity. It may be true that there is no hard and fast separation between Asperger syndrome and classic autism, since they are currently differentiated only by intelligence and onset of language. Both classic autism and Asperger syndrome involve difficulties with social interaction and communication, alongside unusually narrow interests and a strong desire for repetition, but in Asperger syndrome, the person has good intelligence and language acquisition.

The question of whether Asperger syndrome should be included or excluded is the latest example of dramatic changes in history of the diagnostic manual. The first manual, published in 1952, listed 106 “mental disorders.” The second (1968), listed 182, and famously removed homosexuality as a disorder in a later printing. The third (1980) listed 265 disorders, taking out “neurosis.” The revised third version (1987) listed 292 disorders, while the current fourth version cut the list of disorders back to 283.

This history reminds us that psychiatric diagnoses are not set in stone. They are “manmade,” and different generations of doctors sit around the committee table and change how we think about “mental disorders.”

This in turn reminds us to set aside any assumption that the diagnostic manual is a taxonomic system. Maybe one day it will achieve this scientific value, but a classification system that can be changed so freely and so frequently can’t be close to following Plato’s recommendation of “carving nature at its joints.”

Part of the reason the diagnostic manual can move the boundaries and add or remove “mental disorders” so easily is that it focuses on surface appearances or behavior (symptoms) and is silent about causes. Symptoms can be arranged into groups in many ways, and there is no single right way to cluster them. Psychiatry is not at the stage of other branches of medicine, where a diagnostic category depends on a known biological mechanism. An example of where this does occur is Down syndrome, where surface appearances are irrelevant. Instead the cause — an extra copy of Chromosome 21 — is the sole determinant to obtain a diagnosis. Psychiatry, in contrast, does not yet have any diagnostic blood tests with which to reveal a biological mechanism.

So what should we do about Asperger syndrome? Although originally described in German in 1944, the first article about it in English was published in 1981, and Asperger syndrome made it only into the fourth version of the manual, in 1994. That is, the international medical community took 50 years to acknowledge it. In the last decade thousands of people have been given the diagnosis. Seen through this historical lens, it seems a very short time frame to be considering removing Asperger syndrome from the manual.

We also need to be aware of the consequences of removing it. First, what happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high.

Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition.

We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.

Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, is the author of “The Essential Difference.”

Garnett: Needs council will help those with intellectual, developmental disabilities
By RICHARD GARNETT
Special to the Star-Telegram Posted Saturday, Nov. 07, 2009

More than 100,000 children and adults in Tarrant County have intellectual or developmental disabilities (IDD). In fact, a child is born with autism, mental retardation, cerebral palsy or other intellectual and developmental disabilities every 12 hours in Tarrant County.

They are invisible to much of our community.

Families feel isolated and alone as they grapple with their loved one’s needs. Far too often we leave the families and caregivers of these 100,000 Tarrant County residents to figure things out for themselves with little or no meaningful support, not just from agencies but also from their friends and neighbors.

The parent of a child with disabilities struggles with lost dreams and fears of the future. As the child grows older, the challenges of adulthood and a confusing maze of rules, laws and poorly understood services take their toll.

In Tarrant County, as in many communities across Texas, a person with intellectual or developmental disabilities and their family members often are faced with the dual dilemmas of not knowing what services and supports are available and not knowing what questions to ask to learn about their options.

However, there is hope on the horizon. With the leadership, support and endorsement of Tarrant County Judge B. Glen Whitley and Fort Worth Mayor Mike Moncrief, the Intellectual and Developmental Disabilities Needs Council of Tarrant County was formed by The Arc of Greater Tarrant County and Mental Health Mental Retardation of Tarrant County. A Monday kickoff luncheon will bring together more than 100 agencies, groups, officials and professionals to mark this historic initiative.

Last Tuesday, Whitley and the Tarrant County Commissioners Court issued a proclamation stating their support and endorsement for the establishment of the IDD Needs Council. The court noted "the community is seeking to establish a vehicle to coordinate supports and services, establish anti-stigma initiatives and fulfill the need for public education and advocacy so as to meet the critical needs of inclusion and involvement for people with intellectual and developmental disabilities."

The proclamation concluded by urging "the citizens of Tarrant County to give their full support to the Council and its efforts toward enabling people with intellectual and developmental disabilities to live productive lives and achieve their potential, free of stigma and discrimination in the community."

The establishment of this partnership of individuals, family members, service providers, educators, advocates and policy makers will provide an opportunity for improving efficiency in service delivery and will be a forum for comprehensive community planning. What supports and services do we have and what do we need? How can a coordinated network of providers work smarter, not harder?

Many existing community services (child care, healthcare, leisure activities, etc.) could, with appropriate training and design, be available to children and adults with IDD. Most people with disabilities are looking for opportunities to participate in regular community life.

Solutions are not always dependent on more money. Sometimes creativity, innovation, collaboration and the determination to find solutions is the answer.

This groundbreaking initiative will work to ensure that all persons with IDD have access to services and support. The overarching goal of the IDD Needs Council is to assist in the development of a flexible, dependable, accessible and coordinated network of services and support that will:

Bring stakeholders together so that their efforts will be unified, coordinated, focused and more effective.

Identify community problems and recommend solutions that encompass the council’s vision.

Increase public understanding and acceptance of children and adults with IDD.

Promote opportunities for people with IDD to participate fully in the community

Is this a big challenge? Of course. However, we want to strive for a future when every parent knows that their children can be included in community life. We want to see that people with intellectual or developmental disabilities can access transportation, healthcare and employment as their fellow residents can.

Through getting to know people with intellectual disabilities, our community can discover that all people share similar hopes, dreams and goals.

Richard Garnett is the executive director of The Arc of Greater Tarrant County. richard.garnett@arcgtc.org

Poverty and disability greatly correlated, new study shows
baltimoresun.com

MCT News Service, November 4, 2009

Hard economic times are even harder when you have a disability. But poverty and disability don't have to be synonymous if we design our policies well.

A new report from the Center for Economic and Policy Research (a Washington-based think tank) titled "Half in Ten" states that almost 50 percent of working-age adults who experience poverty for at least a 12-month period have one or more disabilities.


People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents.


The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.


The report also astutely observes that direct care workers who assist people with disabilities in their homes and communities are often themselves in poverty. The median income for the 3 million direct care workers in the United States is only $17,000 a year, the report says.


Fortunately, there are several steps we can take to ensure that disability doesn't spell poverty.


The first step is universal health care. The report stresses "the fundamental importance of health care reform, especially the provision of universal coverage, to anti-poverty efforts." The lack of good health insurance, the report says, "is one of the most significant drivers of income poverty and severe disadvantage." Another important step is for the United States to adopt "the kinds of paid-sick-day and paid-sick-leave policies that are already in place in all other similarly wealthy nations."


At least 40 percent of private sector workers in the United States have no paid sick days or leave, the report says.


Third, we should ease the ridiculously harsh restrictions on assets and earnings imposed on those receiving Social Security Disability Income. The current Social Security policy basically requires you to impoverish yourself before you can get disability aid from the government.


And, fourth, we should pay a decent wage to the health care providers who do such a superb job in tending to the needs of the disabled.


It's clear that the current economic hardship is being made much worse for many people than it needs to be due to the disregard politicians and policymakers have for the well-being of Americans with disabilities and those who work in providing them with assistance.


It's time for that to change.


ABOUT THE WRITER


Mike Ervin is a Chicago-based writer and a disability-rights activist with ADAPT (www.adapt.org). He wrote this for Progressive Media Project, a source of liberal commentary on domestic and international issues; it is affiliated with The Progressive magazine. Readers may write to the author at: Progressive Media Project, 409 East Main Street, Madison, Wis. 53703; e-mail: pmproj@progressive.org; Web site: www.progressive.org. For information on PMP's funding, please visit http://www.progressive.org/pmpabout.html#anchorsupport.


This article was prepared for The Progressive Media Project and is available to MCT subscribers. McClatchy-Tribune did not subsidize the writing of this column; the opinions are those of the writer and do not necessarily represent the views of McClatchy-Tribune or its editors.

(c) 2009, Mike Ervin

Distributed by McClatchy-Tribune Information Services

Copyright © 2009, Tribune Media Services

Clinical Tests Begin On Medication To Correct Fragile X Defect

ScienceDaily (Nov. 4, 2009) — NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. There has to date been no medication that could alter the disorder's neurologic abnormalities. The study will evaluate safety, tolerability, and optimal dosage in healthy volunteers.


The work is the outcome of basic research that traced how an error in the fragile X mental retardation gene (FMR1) leads to changes in brain connections, called synapses. The changes in turn appear to be the mechanism for learning deficits in Fragile X syndrome. The new trial tests Seaside Therapeutics' novel compound, STX107, that selectively and potently targets the synaptic defect.


Thomas R. Insel, M.D., director of the National Institute of Mental Health, said, "This project is the culmination of years of fundamental research, first identifying the genetic mutation and later deciphering the biochemical consequences of this mutation. Now, with the initiation of this first clinical study, we move one step closer to understanding how this novel candidate may play a critical role in improving the lives of individuals with Fragile X Syndrome."


Randall Carpenter, M.D., president and chief executive officer of Seaside Therapeutics, and Mark Bear, Ph.D., Seaside's scientific founder, are leading the research. Dr. Bear is a Howard Hughes Medical Institute investigator and a professor of neuroscience at the Massachusetts Institute of Technology, Cambridge, Mass.


The National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Neurological Disorders and Stroke (NINDS) have provided grant support. Private foundations providing funding include the advocacy groups Autism Speaks and FRAXA Research Foundation.


Fragile X syndrome is the most common inherited cause of intellectual disability, affecting an estimated 1 in 4,000 males and 1 in 6,000 females. The syndrome causes a range of developmental problems, including learning disabilities and cognitive impairment. People with Fragile X syndrome may have anxiety and attention deficit hyperactivity disorder. About one-third of males with Fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Usually, males, who have only a single X chromosome, are more severely affected than females.


People with Fragile X have DNA mutations in the FMR1 gene that, in effect, turn off the gene. Research in recent years by Dr. Bear and colleagues has identified the molecular consequences of this silencing of FMR1. Normally, the protein product of the FMR1 gene acts to dampen the synthesis of proteins at synapses that are stimulated via a specific class of receptors on brain cells--metabotropic glutamate receptors (mGluRs). Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections do not develop normally.


This basic research provided the basis on which to develop medications that could correct the defect.


The current study will focus on a compound, designated STX107, that selectively inhibits one type of mGluR receptor, mGluR5. Evidence in mice with Fragile X-like symptoms suggests that reducing levels of mGluR5 can restore normal synaptic protein synthesis and improve function.


The initial phase 1 study of STX107 will involve healthy volunteers. If results suggest that the medication is safe and tolerable, the study will progress to a phase 2 test of dosage and efficacy in adults with Fragile X syndrome. If STX107 shows promise in adults, the compound will be assessed for pediatric safety (with funding from the Best Pharmaceuticals for Children Act [http://bpca.nichd.nih.gov/about/index.cfm] through NICHD) prior to initiating clinical trials in children.

Adapted from materials provided by NIH/National Institute of Mental Health, via EurekAlert!, a service of AAAS.

A Powerful Identity, a Vanishing Diagnosis

The New York Times - November 3, 2009
By CLAUDIA WALLIS

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.


In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.


Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.


But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.


If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.


“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.


“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”


Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”


But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.


Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”


The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.


Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.


Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.


Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.


The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.


Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.


The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.


And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.


A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”


Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.


In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.


Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.


Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.


The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”


The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”


Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.


In interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.


“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”


But some younger people involved in the growing autism self-advocacy movement see things differently.


“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”


All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.

Patrick aide: State to cut at least 1,000 jobs

October 29, 2009 02:39 PM
By Matt Viser, Boston Globe Staff

WORCESTER -- At least 1,000 state jobs will be eliminated and another 1,000 are in jeopardy unless unions agree to concessions as the state moves to close a $600 million budget gap, Governor Deval Patrick's top fiscal aide said today.

Administration and Finance Secretary Jay Gonzalez said the jobs in jeopardy could be saved if state employee unions agree to $35 million in concessions. The savings would be achieved through nine unpaid furlough days and officials are hoping to get agreement from the unions by Dec. 1, he said.

Gonzalez's remarks came after a speech and news conference today in which Patrick announced that up to 2,000 jobs could be cut as part of a plan to address the budget gap.

Earlier this month, Patrick had warned that jobs could be eliminated unless unions agreed to concessions. "So far they have not agreed. While we will keep talking, we cannot talk indefinitely," he said.

Patrick emphasized today that, while making cuts in other areas, he would fully protect the funding sent by the state to cities and towns for schools and other services.

"We will not cut our record investment in our students and our schools. We will not shortchange our children's future. … We will not cut local aid. Local communities are the front line of both our economy and our social life and they are struggling as it is," he said.

Patrick said he would move to make $352 million in cuts across state government, implementing $277 million in cuts across the executive branch and seeking authority to make $75 million in additional cuts in other branches of government, including the Legislature, the judiciary, and county sheriffs.

Patrick also said he would fill part of the budget gap with $60 million in federal stimulus money. Other money-saving measures included: a $5 million cut in the Quinn Bill education program for police and asking state managers to take nine unpaid furlough days.

“The Quinn bill... is a program we must begin to phase out," Patrick said. He has asked the Massachusetts Coalition of Police and his secretary of public safety, Kevin Burke, to co-chair a commission to recommend a different program to encourage police to earn higher education degrees.

Patrick is also today filing legislation to eliminate Bunker Hill and Evacuation days as paid state holidays in Suffolk County, which he called “traditions whose time has passed" as the crowd applauded at the New England Business Expo at the DCU Center in Worcester.

It is the fourth time within a year that Patrick has been forced to make emergency cuts because tax revenues came in lower than expected. According to the governor, tax revenues for the first quarter of the fiscal year came in $212 million lower than expected.

City and town officials were concerned that the budget cuts could result in slashes to the state's aid to them, which has already resulted in a $724 million drop, or 12 percent drop in funding they receive, compared with the previous fiscal year.

With people and businesses earning and spending less in a faltering economy, the state government ends up collecting less taxes, which are vital to providing services. Patrick said the state and the nation were "in the midst of the worst economic recession since the Great Depression."

Advocates for the disabled applauded the governor's decisions to make a smaller cut than they feared in human services, and came to Worcester to show their support.

“We’re psyched,” said Leo Sarkissian, executive director of The Arc, which advocates for 180,000 individuals and families with intellectual and developmental disabilities. “No one likes a cut, but this is good. Families and advocates are thrilled.”

Cuts to human services ended up being $82 million, although advocates had expected those cuts to be as high as $300 million.

“It’s kind of like you thought you would get capital punishment, and you only got 20 years,” said Frederick Misilo, president of The Arc.

Patrick’s cuts to human services included $7.7 million from developmental disability support. As recently as last week, officials feared disability services would lose as much as $60 million in services.

“Our governor showed us he has a compassionate heart and makes his decisions based on the values of all of the people of the Commonwealth,” Gary Blumenthal, executive director of the Association of Developmental Disabilities Providers, said in a statement. “We know Governor Patrick was faced with impossible choices, but he looked us in the eyes, listened to our pleas, and responded accordingly. This was a courageous decision.”

Advocates for the disabled have held a two-week vigil outside the governor’s office in an effort to make their cause fresh in his mind as he made the cuts.
Matt Viser can be reached at maviser@globe.com.

Axelrod remains mindful of daughter with epilepsy

(AP) – 1 day ago

WASHINGTON — White House presidential adviser David Axelrod says the demands of his job can sometimes be hard since he can't spend quality time with his daughter, who suffers from epilepsy.


In a broadcast interview Sunday, Axelrod said he's grateful that newly approved medication seems to be finally controlling the seizures of Lauren, 28, after many years of trial and error with other therapies. But he acknowledges it is still difficult to be away from Lauren, who lives at a home for the developmentally disabled in Chicago.


"It's been hard to explain to her. She doesn't understand why. She asks all the time, 'Why does Barack Obama need so much help?'" Axelrod said.


"There was a time when we have given our right arm for just a — a week of good days. And now, she has them consistently. So, you know, that's a big victory," he said.


Axelrod spoke in an interview with "60 Minutes" along with Lauren and his wife, Susan, who is president of the Chicago-based advocacy group CURE, or Citizens United for Research in Epilepsy.


The couple described the initial shock they felt when their 7-month-old daughter suddenly became limp and blue in her crib. When Susan Axelrod picked up Lauren, she immediately went into a seizure. The medical treatments at the time were limited, and so the Axelrods were forced to try 23 different medications and an unsuccessful brain surgery for their daughter by the time she was 18.


Their turmoil prompted Susan Axelrod to help start CURE to promote medical research.


Copyright © 2009 The Associated Press. All rights reserved.

Stedman Graham brings his nine steps to focus Arc activists
Breaking Down Barriers
Wednesday, October 21, 2009

By Tina Calabro/Pittsburgh Post-Gazette

As a parent raising a child who has cerebral palsy, I've become a believer in the value of attending conferences about disability issues.

Conferences are opportunities to get focused and energized, to not only find answers to questions, but to learn what questions to ask -- how systems operate, how to effect change, who are the leaders who will light the path.

Two national conferences are coming to Pittsburgh next month -- The Arc of the United States on Nov. 11 to 14 and TASH on Nov. 18 to 21. Both conferences are concerned with quality of life across the age span with an emphasis on people who have significant disabilities.

Both organizations had their start in the civil rights era, a tipping point for many Americans struggling with issues of equality and opportunity. Indeed, the names behind the acronyms for both groups are a remnant from that period -- ARC stood for the Association for Retarded Citizens; TASH was The Association for People with Severe Handicaps. TASH now uses only its acronym. The Arc substituted words for its acronym.

Both groups remain powerhouses of advocacy. In the early 1970s, the Pennsylvania ARC sued the commonwealth over the exclusion of children with disabilities from public schools. The successful outcome led directly to the federal Individuals with Disabilities Education Act.

Around the same time, TASH's founders called attention to deplorable conditions in institutions and campaigned for their closing. Today, TASH is a leading voice for the rights and inclusion of people with significant disabilities.

 Meetings information

• The Arc of the United States Convention, Nov. 11-14, David L. Lawrence Convention Center; www.thearc.org; 888-272-7229. ext. 460

• TASH Conference, Nov. 18-21, Westin Convention Center; www.tash.org; 202-540-9020

• Scholarships: Arc, 412-995-5000 ext. 515 or cdowns@achieva.info; TASH, 202-540-9015 or hkimmet@tash.org.

The Arc has tapped Stedman Graham as its keynote speaker. Mr. Graham is an author and motivational speaker, who is also well known as the "significant other" of Oprah Winfrey.

In a phone interview, Mr. Graham expressed his admiration for Arc's work and noted that his mother founded a chapter of the organization in the southern New Jersey town where he grew up.

Q: You have two siblings who have disabilities -- what will you share at the conference about your growing-up years?

Graham: Well, I'll talk about some of my experiences in terms of the issues that are similar to those that others deal with. It's part of my life, part of what got me here and part of my ability to have the determination and perseverance to keep going.

It certainly makes you work harder, and I'm more empathetic as a human being because of it. I have no tolerance for people who have all their faculties [but do not] take advantage of and appreciate what they have.

But [at the conference] I will speak more about how to develop an identity for yourself. It doesn't make a difference who you are, everyone has an identity that they can develop. If you don't know who you are, you're not going anywhere, I don't care if you're disabled, working in a job or in college.

And I want to stress the importance of caregivers taking care of themselves and making sure they do not neglect their development. I'll be talking about how you do that through [my] nine-step process.

Q: What is that process?

Graham: You first have to understand who you are, you have to develop an identity for yourself. That can be a family identity, a personal identity, a professional identity. Then you have to look at your life holistically so you can create as much balance as you can. You create work-life balance and build a life.

Then you create a vision for yourself and what you want your future to look like. Then, a plan. That's a daily plan, a weekly plan, a monthly plan, a yearly plan.

Then we talk about your guiding principles, your value system, your attitude and your ability to build relationships. Then, overcoming your fears, what obstacles you face, and how to get through those obstacles.

Step six is gaining the power to change not so much what happens to you but how you respond to it, how you get through it, how you keep a positive attitude.

Step seven is building your dream team. Step eight is getting the right information about what's important in your life. The last step is to commit to your vision and to improve your life every single day.

Q: You mention caretakers, but will you also be directing your message to people with disabilities?

Graham: Doesn't make any difference. The process is the same whether you are disabled, a caregiver, or whoever. People who are disabled need to understand what is possible for them, that we all have strengths and weaknesses.

Q: Your most recent book is "Diversity: Leaders not Labels." Disability rights advocates have been telling employers that disability, like race and ethnicity, is a component of diversity. Many people with disabilities prepare for jobs, then encounter a barrier when they can't get hired.

Graham: I think it's bigger than that. I don't think it's just that the marketplace doesn't want to hire people who are disabled. I think you have to focus on your strengths, get any additional training you need, and understand how the system works. ... You can't overcome the fact that someone is prejudiced, but you can figure out how to adjust to the circumstances and get the best out of it.

Tina Calabro writes on disability issues. Her e-mail address is tina.calabro@verizon.net.
Read more: http://www.post-gazette.com/pg/09294/1006994-114.stm#ixzz0UbFMD6OX

After eight years of the Bush administration using the power of the Justice Department to undermine civil rights laws, it is good to see the department applying one of those laws, the Americans With Disabilities Act of 1990. It has started a timely new initiative aimed at full enforcement of that law, which forbids unjustified isolation of the mentally disabled and requires that they be integrated into the wider community where appropriate.

The initiative is having its coming-out party in New York, where Justice Department lawyers are seeking to intervene in a closely watched federal lawsuit involving thousands of mentally ill people being held in privately run adult homes. A federal judge recently described them as “even more restrictive or ‘institutional’ than psychiatric hospitals” that they were intended to replace.

In a ruling last month, the federal judge, Nicholas Garaufis, painted a dismaying picture of adult “homes” that in no way complied with federal law and that were more like jails than houses. In these places, mentally ill people who did not present a danger to themselves or to others had little of the privacy, freedom or enriching activities that would help them develop full, independent lives.

That thousands of New Yorkers were still confined in this way is striking since the state already knows the right way to do it. New York is known nationally for vibrant, innovative housing developments where mentally ill people live successfully and independently while receiving mental health and other services from community-based groups.

The judge has already required the state to produce a plan for correcting this egregious situation with the warehousing of the mentally disabled. But in the letter announcing its intent to intervene, the Justice Department said this matter was “a great concern” to the federal government. It said it wanted a role in the process because the remedy designed in New York might serve as a national model for dealing with this problem. The onus is now on the state to come up with that remedy.

Geralyn Spiesz: Doors opening for all with Down syndrome

The Buffalo News - Updated: October 15, 2009, 12:33 PM /

A spectacular movement has been taking place over the past few decades. This movement has pushed boundaries, changed minds and opened doors. The people who have benefited from these efforts have reached the bar of expectation and in many cases shattered it on their way up.

October is National Down Syndrome Awareness Month and it is the perfect time for a new awareness of the astounding achievements of people who have Down syndrome. Today, 50 years after the extra chromosome responsible for Down syndrome was identified, our children’s potential is unlimited.

I am a mother of three boys. It was a shock when my husband and I learned our third son Lucas had Down syndrome. But we soon realized that our expectations for Lucas were the same as those for our other boys. I would never entertain the notion that any of my children’s potential was limited.

My first job as an occupational therapist was in developmental disabilities. Today, many more years later than I care to admit, I am amazed at the progress and change that has occurred. After Lucas was born I began learning all about Trisomy 21 and kept coming back to the same question: How could the presence of an extra chromosome mean severe disability and delay a few decades ago, yet children with Down syndrome today are successfully completing regular academics in school and becoming an integral part of society? Better yet, how much further can we go?

This journey began with parents who fought against a system that sent their children to institutions and taught them at home things the specialists of the day didn’t think they could learn. These parents stood strong against a school system that didn’t believe their children could learn alongside others. These parents hearts burst with pride as they won the right to put their children on a school bus to the neighborhood school and their hearts broke from outrage when society would limit their children’s opportunities because of outdated ideas.

Today universities are putting programs in place to attract and graduate people with intellectual disabilities, making a college education a reality for many.

The medical profession put together comprehensive health care plans so the often deadly complications that can come with Down syndrome can be aggressively and successfully treated. Early intervention services were made available to babies so that not a precious minute of their unlimited potential was wasted.

I thank all of these people and I eagerly accept the torch from them. In a few decades people with Down syndrome have gone from needing maximal help with basic tasks to completing degrees, having relationships and fulfilling their dreams.

Karen Gaffney, who has Down syndrome, received a regular high school diploma with a 3.4 grade point average, earned a college degree and swam Lake Tahoe competitively, more than once. She is the president of her own self-named foundation and travels the country educating society on the true realities of Down syndrome. She is but a representative of thousands of people who are achieving things few thought possible.

RITCHIE BLASTED FOR 'RETARDED' SLUR

Oct 14, 2009, Contactmusic.com - GUY RITCHIE has been attacked by campaigners for a disabilities group after dubbing his ex-wife MADONNA"retarded".

Richie made the comment in an Esquire magazine interview, during which he reflected on his divorce from the pop superstar.

He said, "I still love her. But she's retarded, too."

The quip appeared to reference Madonna's outburst during a gig on her Sticky & Sweet tour shortly after their 2008 split, when she gave a shout-out to the "emotionally retarded", before adding, "You may know a few people like that. God knows I do."

But the director's use of the term has upset representatives from disabilities advocate The Arc.

A spokesperson tells Us Weekly magazine, "Use of the R-word demeans people with intellectual disabilities."

_________________________________________________________________

Ritchie blasted for "retarded" Madonna slur

Wednesday, October 14 2009, 4:07pm EDT, Digital Spy - By Oli Simpson

Guy Ritchie has been criticised by campaigners for a disability group after he branded ex-wife Madonna "retarded".


Ritchie made the remark during an interview with Esquire magazine, while reflecting on his divorce from the popstar.


He said in the piece: "I still love her. But she's retarded, too."


According to Contactmusic, the comment was a reference to Madonna's outburst during a gig on her 'Sticky & Sweet' tour, when she gave a shout-out to the "emotionally retarded", before adding: "You may know a few people like that. God knows I do."


However, the director's use of the term has upset representatives from disability rights group The Arc.


A spokesperson for the organisation said: "Use of the R-word demeans people with intellectual disabilities."


Ritchie has yet to respond.