A plea for civility

Liane Kupferberg Carter, a writer who has a child with autism, writes in the Huffington Post that she’d like to see an end to the “war raging within the autism community.”

Angry arguments over such topics as vaccines, purported autism cures and neurodiversity are preventing the community from finding common ground, she says. An excerpt:

…whether you are trying to heal autism through genetic research, environmental studies, or are urging acceptance of neurodiversity, there is one thing on which everyone can surely agree: we love our children. They deserve greater awareness, acceptance and opportunity. We desperately need more research on promising treatments, and programs to meet the housing and employment needs of a population that is rapidly aging up.

On the eve of World Autism Awareness Day, I’m pleading for more civility in our community. Open debate that is not personal, petty or mean. There’s just too much at stake. How can we expect Congress to listen to us, when we are so divided among ourselves?

Our children deserve our respect. Our commitment. Our hope.

We aren’t the enemies.

Autism is.

Related post here.

Neil Greenspan, writing in the Huffington Post, says the fundamental problems facing adults with autism-related disabilities are rarely addressed by the media. Reasonably typical, he says, is a young adult of his acquaintance who lives alone and is unemployed and socially isolated.

Among the problems Greenspan sees for adults with autism:

• A lack of organized support for socialization or recreation;
• A lack of job prospects, coupled with a lack of effective help in finding and maintaining work;
• A lack of housing options for adults who need some supervision or support;
• A shortage of trained medical professionals and coordinated care.

An excerpt:

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.

Greenspan is an immunologist in the Department of Pathology at the Case Western Reserve University School of Medicine.

From the New York Times:

A federal judge has ordered the state of New York to move some 4,300 people with mental illness out of warehouse-like institutions that keep them segregated from society.

The order by Judge Nicholas Garaufis follows his decision last fall that the state was illegally discriminating against people with mental illness by holding them in privately-run “adult homes” that were just as restrictive as the state-run institutions they were intended to replace.

Judge Garaufis ordered the state to develop at least 1,500 units of supportive housing a year for the next three years. The state had argued that supportive housing would be unacceptably expensive. Commenting on the proposal submitted by the state, the judge wrote, “The court is disappointed and, frankly, incredulous that defendants sincerely believed this proposal would suffice.”

Earlier posts here and here and here.

See also: The 2002 series of articles by Clifford J. Levy of the New York Times that described scenes of misery, squalor and exploitation in the adult homes.

‘Our leaders fail the neediest’

Columnist Rick Green, writing in the Hartford Courant, says Connecticut’s leaders have spent hundreds of thousands of dollars on a legal fight to keep the Southbury Training School open, even though they know the facility violates federal discrimination law. “We will pay dearly for this,” he writes. A legal challenge to the sprawling institution for people with intellectual disabilities is being heard in federal court.

Green describes Southbury as a “1950s-era model for segregated care of the disabled,” and a “world that I thought existed only in film documentaries.” He says former Connecticut Gov. John Rowland caved to pressure from fearful families and staff fifteen years ago in a “transparent political move” that effectively halted efforts to move institutional residents back into the community and would “infect state policies for years to come.”

Experts say there is no reason why people with complex disabilities can’t live satisfying lives in the community with appropriate support, but families and guardians need to be educated about the possibilities to allay fears. Further, they say, community-based care comes at a lesser cost: approximately $122,000 per person per year, as compared with Southbury’s pricetag of $350,000 each for some 450 residents. An excerpt:

After more than a decade of waiting, we await a solution from a federal judge.

That’s what you get when nobody leads.

See also: School for intellectually disabled under pressure to change — Hartford Courant

San Diego Chargers owner will retrofit thousands of rental properties

From the San Diego Union-Tribune, AP/ABC, Atlanta Journal-Constitution:

In what is being called the largest disabled-access settlement in the housing industry, [San Diego] Chargers owner Alex Spanos’ development company will spend more than $12 million to retrofit thousands of apartment units found to be out of compliance with fair housing laws governing accessibility.

The settlement covers 15,500 units in 123 apartment properties in 11 states, and stems from a lawsuit filed by the National Fair Housing Alliance against the A.G. Spanos Cos., which is run by Spanos’ sons Michael and Dean Spanos.

In announcing the settlement, the National Fair Housing Alliance praised the developer for crafting a settlement that went beyond the letter of the law.

“It’s unusual for me to praise defendants in a case,” said Shanna Smith, president of the alliance … “This is a landmark, unique, comprehensive settlement.”

Oakland University violated federal law by excluding him, judge rules

From the Detroit Free Press, Detroit News, Oakland [MI] Press:

A federal judge has ruled that Michigan’s Oakland University has violated the federal Rehabilitation Act by failing to allow a student with a cognitive impairment to live in a campus dorm. An Oakland spokesman said the university will appeal the ruling, but will allow the young man to live on campus during the process.

U.S. District Judge Patrick J. Duggan ordered Oakland to make a room available to 25-year-old Micah Fialka-Feldman, who has been taking classes in the school’s OPTIONS program. Fialka-Feldman pays a fee equal to full tuition but doesn’t earn grades in the program, which is designed for students with cognitive disabilities who would not otherwise be able to meet the university’s admissions requirements.

The university has maintained that Fialka-Feldman, who takes buses two hours a day to get to class from his parents’ home, is not eligible for a dorm room because he’s not enrolled in a degree-granting program.

Duggan said the university’s assumption that the young man would be unable to follow housing rules “appears to be grounded on prejudice, stereotypes and/or unfounded fear.”

Earlier posts here.

(Detroit News photo)

An editorial in the New York Times hails the Obama Justice Department for enforcing the Americans with Disabilities Act. Justice Department lawyers are seeking to intervene in a federal lawsuit involving people with mental illness who are being held in “adult homes” that are “more like jails than houses.” An excerpt:

… 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.