92-Year-Old Institution Closes in Tenn.

On Nov. 19, the last six residents were moved from Clover Bottom, ending an era of institutionalizing people with low IQs or other intellectual disabilities away from their communities, a practice that in recent years had come with a huge price tag for taxpayers - about half a million dollars per resident per year.

Like many states, Tennessee has moved slowly in the direction of closing its institutions. Clover Bottom was originally scheduled to be closed in 2005.

Its former residents -- many elderly and in poor health -- have been moved into small homes run by the state or by private subcontractors.

Review: "Rosemary, The Hidden Kennedy Daughter"

One of America’s most prominent and renowned 20th century families harbored a tightly held secret for many decades. Rose Marie “Rosemary” Kennedy was the first daughter born to Rose and Joseph P. Kennedy, Sr. As she grew it soon became apparent that Rosemary had intellectual disabilities. This information was hush-hushed by the family due to the stigma attached to such incapacities in the early 1900s.

After Rosemary’s death in 2005, her diaries and correspondence, as well as letters from her school and doctors, were released and her long-concealed medical records were made available to the public. This new historical data, plus interviews with some of her caregivers, reveal details about the nature of Rosemary’s developmental disabilities and the family’s response to this child who was a family embarrassment.

Fighting for Disability Rights

Amazing story from Croatia by Human Rights Watch. “I want to leave but I can’t,” Ana told me. “I have a guardian. I told my sister and my doctor [that I want to leave this place], but my guardian has a say.”Ana is among 18,000 people with intellectual or psychosocial disabilities placed under guardianship in Croatia, and stripped of their legal capacity – the right to make basic decisions - to marry and form a family,  to consent to medical treatment, or to sign an employment contract. A significant majority have been placed under full guardianship, under which guardians – often nominated by the state – make all decisions for them.But that’s about to change.

One Year Later, a Return to Rhode Island

A year ago, Rhode Island agreed to find better opportunities for at least 2,000 people with developmental and learning disabilities. It was part of a settlement after a federal investigation uncovered programs that funneled people with disabilities into sweat shops, where they toiled for very little pay.

One year later, journalist Casey Nilsson looks at what progress the state is making to address the problem.

Study Questions Overuse of Medication

New research suggests that many drugs are vasty overprescribed to people with intellectual disabilities despite scant evidence that they provide any benefit.

An analysis of medical records for more than 33,000 adults with intellectual disabilities in the United Kingdom between 1999 and 2013 finds one in four were prescribed antipsychotic medication.

An Oasis of Care and Caring

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”
Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest. 

But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

Delaware Divided on Housing Issue

The debate that divides Delaware's disability community, especially in matters of housing, has plenty of sharp edges.
Those edges have come into plain view since the federal agency that decides how to steer taxpayer support for disability services has changed the rule on how it will fund home- and community-based services.

Special Olympian Representing New York City at Upcoming Games

BRONX, N.Y. — When Valerie Romero’s mother used to bring her on the sidewalk outside of their Morris Park Ave. home in the Bronx when she was a child, everyone would have to keep an eye out for her so she wouldn’t get anywhere near the street and the cars rushing by.

“We had to run and catch her,” Nancy Romero said. “If you’d bring her out here she would just run, run, run, run. In the park, too.”

Many years later, Valerie Romero is still running. And people are still trying to catch up to her.

Romero, now 44, is one of the 3,500 athletes who will compete in the Special Olympics USA Games in Mercer County, N.J., next week.

Lifetime Cost of Autism Tops $2 Million

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

Best States for Disability Services Ranked

An annual ranking of states offering the best services for people with intellectual and developmental disabilities reveals a familiar but evolving landscape.The analysis of disability services in all 50 states and the District of Columbia being released Thursday by United Cerebral Palsy finds top performers spanning the map. In previous years, the best services were largely clustered in the Northeast and West.Arizona claimed the number one slot in the ranking for the third year in a row. Also rounding out the 10 best on this year’s list are Michigan, Hawaii, Georgia, New York, South Carolina, Maine, Massachusetts, Ohio and Missouri.

Agencies Challenge New Hampshire's Transition to Medicaid Reform

NASHUA – Clients, parents and employees of Gateways Community Services packed a showdown meeting at Harbor Homes last week on the state’s plans to impose cost efficiencies on a state Medicaid system considered to be hemorrhaging money.

Medicaid officials told the Governor’s Commission on Managed Care that more than 100,000 Medicaid subscribers on Dec. 1 smoothly switched into care management for their visits to hospitals, clinics, doctors and other medical providers.

New Hampshire is the 48th state in the nation to offer managed care under Medicaid and state budget writers are relying on the reform to save $16 million in state spending over the next 22 months

700,000 children have cerebral palsy in Nigeria

No fewer than 700,000 children are living with cerebral palsy, consultant pediatrician, Prof Afolabi Lesi has said.
Cerebral palsy (CP) is a physical disability that affects movement and posture. It is an umbrella term that refers to a group of disorders affecting a person’s ability to move. CP is a permanent life-long condition, but generally does not worsen over time. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Warehoused: Nova Scotians with Disabilities Face a Housing Crisis

From Huffington Post Canada - an in-depth look at Nova Scotia’s system to provide housing for persons with intellectual disabilities which is overburdened and bureaucratic as governments keep promising to fix it. As journalism students in the investigative workshop at the University of King’s College discovered, our most vulnerable citizens are essentially warehoused.

Penny Kitchen

A SYSTEM IN CRISIS

Nancy Walker’s partner had never seen her so upset. She had cried through the entire meeting with her son’s social worker, and would continue to cry “pretty much for the whole year. Every single day.”

This isn’t what she’d wanted. This isn’t what she’d wanted at all.

Ben James, her 19-year-old boy-becoming-man, had severe autism. He

Paul Gilllis

was in public school and had improved his communication by using picture-and-words systems and new technologies available for autistic people on iPods. He loved swimming, went bowling once a week and thrived at his recycling centre job.Walker had dreams for him.

But James could be violent. The six-foot-two, 230-pound teenager’s kicks, scratches, bites and head butts were nearly always aimed at his mother. Despite the stronghold that was his bedroom – reinforced walls, double studding, a Plexiglas window and a steel door – Walker still had to find ways of avoiding her son’s demands, and physical outbursts when they weren’t met.

An Experimental Drug's Bitter End

Holly Usrey-Roos will never forget when her son, Parker, then 10, accidentally broke a drinking glass and said, “I’m sorry, Mom. I love you.”

Holly Usrey-Roos, right, with
Parker, 14, and Allison, 10
. Both have fragile X syndrome.

It was the first time she had ever heard her son say he loved her — or say much of anything for that matter. Parker, now 14, has fragile X syndrome, which causes intellectual disability and autistic behavior.Ms. Usrey-Roos is certain that Parker’s new verbal ability resulted from an experimental drug he was taking in a clinical trial, and has continued to take for three years since then. She said she no longer had to wear sweaters to cover up the bruises on her arms she used to get from Parker hitting or biting her.

Now, however, the drug is being taken away

.

Georgia Execution Halted

ATLANTA -- Condemned killer Warren Lee Hill, whose mental retardation claims have attracted international attention, was spared execution Tuesday night with less than an hour to go before he was to be put to death.
Hill had already been given a sedative to prepare for his lethal injection, shortly after the state parole board declined to commute Hill’s capital sentence and after the Georgia Supreme Court rejected his final appeal.

The 'Other' for Far Too Long

California has been at the forefront of our country's drive to embrace its diversity. When people talk about promoting diversity, they usually are referring to people of varying race, religions, or sexuality living peacefully side by side in society. A truly diverse society embraces everyone for both their differences and their similarities, with the understanding that people are people. The reward for this inclusion is great: The more cohesion a community has, the stronger and more productive the community.
But, there is one population that has often been left out of this tapestry of diversity that we have all worked so hard to weave. Even in these progressive times, there is a group of people, labeled "developmentally disabled," that are often still treated as second-class citizens because they are "different." Unfortunately most people with developmental disabilities are tolerated, but not embraced as assets to our community. At best, they are treated as special guests or welcomed visitors. At worst they are ignored or actively discriminated against.

DSM Panel Shifts Course on Definition of Intellectual Disability, but Not Autism

Experts behind the new version of the Diagnostic and Statistical Manual of Mental Disorders didn’t back down on major changes to the definition of autism, but appear to have made an about-face when it comes to intellectual disability.
Initial plans to revise the diagnosis of “mental retardation” in the forthcoming fifth edition of the psychiatric manual called for the condition to be renamed “intellectual developmental disorder.” Critics blasted the proposal because it was inconsistent with the more commonly accepted term “intellectual disability” which has already been adopted in many federal and state laws.

Program Eases Transition to Adulthood

Special education occupies a large part of the mission — and budget — of many school districts. With learning disabilities such as ADHD and dyslexia each estimated to affect more than 10 percent of the school-age population, special education teachers have their hands full helping those students navigate increasingly rigorous, state-mandated curricula.
An equally daunting challenge, though, is how to serve a growing student population with more severe learning problems, from intellectual disabilities (the term officially established in 2010 by Congress to replace mental retardation) to autism, a spectrum of cognitive and behavioral conditions that affects an expanding number of youngsters. 

California Legislators Pass Bill to Drop 'R' Word

SACRAMENTO -- A bill awaiting Gov. Jerry Brown's signature won't change any services, rights or responsibilities in state law. But to supporters, the bill's changes are critical: It would drop the words "mental retardation" and "mentally retarded" from state regulations and publications.
The terms, which supporters of the bill say are outdated and offensive, would be replaced by "intellectual disability" and "person with an intellectual disability." The legislation, by Sen. Fran Pavley, D-Santa Monica, passed unanimously in both the state Assembly and Senate last week.

Study Finds People with Developmental Disabilities Prone to Poor Dental Health

Monday I wrote about Olympic swimmer Ryan Lochte’s decorative dental grill.
Today I’m writing about a phenomenon at the other end of the dental-care spectrum. Research published Wednesday morning in the Journal of the American Dental Association sheds light on the dental health of people whose intellectual or developmental disabilities (IDDs) may interfere with their care.
Researchers at Tufts University School of Dental Medicine in Boston examined a year’s worth of electronic dental records for 4,732 adults (ages 20-98) with IDDs. The patients’ dental care was provided through clinics, supported by the state of Massachusetts and run by Tufts, designed to provide dental care to people with such disabilities.