‘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

Just ten years ago, writes Oregon state legislator Sara Gelser, her state closed a notorious institution that had lost its federal funding amid charges of widespread abuse and neglect. Now, she says, Oregon has become the first state in the nation to serve all of its citizens with developmental disabilities in their own communities. An excerpt from Gelser’s op-ed in the Portland Oregonian:

Oregon can be proud to be the first state in the nation to have fully transformed its developmentally disabled system into one that affirms equality and human dignity. In other parts of the country, advocates still raise alarms about the conditions that persist for thousands of children and adults living in their state institutions. Many of those states look to Oregon for advice about how to improve their service systems. We must continue our efforts to improve Oregon’s developmental disability service system, and must never forget the abuses of the past. However, with the 10th anniversary of Fairview’s closure, we should take a moment to celebrate our progress.

Today, Oregonians with developmental disabilities are no longer deemed “inmates” of an institution.

Instead, they are neighbors and friends.

That is progress.

Gelser is the mother of a person with an intellectual disability. Earlier post here.

Families are fearful. Unions promise to fight.

From the Los Angeles Times, San Gabriel Valley Tribune:

California officials this week announced plans to close one of the state’s largest institutions for people with intellectual and developmental disabilities. The Lanterman Developmental Center in Pomona houses 400 people on 302 acres, and employs more than 1,300 people. “It’s just not economical for us to continue it,” said Terri Delgadillo, director of the state Department of Developmental Services.

State officials promised to arrange for residents to get proper care in community-based settings. Family members expressed dismay, saying they feared their loved ones would not be adequately cared for if they left Lanterman.

“It’s devastating for us,” said one woman, whose brother has lived at the institution since 1969. “People like Bobby are more confined in the community. At least [at Lanterman] he can wander the grounds safely.”

The closure requires approval from the state legislature. More than 2,000 people remain in California institutions.

Related story: Toxic Rosewood raises ire, by Jennifer Bishop in the Baltimore Brew

A Maryland state senator has sent a mass email to his constituents warning them that the site of the former Rosewood Center is now considered a dangerous environmental and health hazard. The institution for people with disabilities was closed last year.

Disability advocates reacted angrily. An excerpt:

“The State’s assessment found Rosewood to be so dangerous as to recommend that no one trespass on the property,” said Cristy Marchand, executive director of the ARC of Maryland. “The real question is the response that will be made to the hundreds of children and adults with developmental disabilities whose health was threatened by toxic conditions while living for decades at Rosewood Center.”

From the Montreal Gazette, Toronto Star:

Canada must end institutionalization of mentally disabled people and invest in their quality of life by improving access to jobs and social supports, says a report released to coincide with the International Day of Persons with Disabilities.

The report by the Canadian Association for Community Living found that only a quarter of Canadians who have an intellectual disability and live alone are employed, and almost 75 per cent of them live in poverty.

The group also called for the closing of Canada’s three remaining large-scale institutions, which house some 900 people in Alberta, Manitoba and Saskatchewan, and called for community-based services to take their place. “Living in an institution is not living,” said Bendina Miller, president of the association.

Related story: Govt. report finds 60 percent of Israelis with disabilities live in poverty; Many are isolated — YnetNews, Tel Aviv

From the Atlanta Journal-Constitution:

A handful of protesters were arrested in the courtyard of the Sam Nunn Federal Center in Atlanta Tuesday during a demonstration calling for better long-term care options for people with disabilities.

Representatives of the Office of Homeland Security refused to disclose how many had been arrested and whether they were being temporarily held.

The protest was part of a five-day campaign by members of ADAPT, a national coalition of disability advocates, to seek state compliance with the Supreme Court’s 1999 Olmstead decision. The ruling has been interpreted as directing states to provide community-based supports for people with disabilities rather than continue unwarranted segregation in institutions.

See also: ADAPT Action Report

From AP/Boston Herald, AP/[Waltham, MA] Daily News Tribune:

Two Massachusetts legislators have filed bills seeking to redress historic abuses that took place in the state’s Fernald School, which opened in 1848 and is slated to close next year.

The institution, which is the nation’s oldest publicly funded facility for people with developmental disabilities, was the site of Cold War experiments including some by MIT and Quaker Oats Co. in which children were fed radioactive oatmeal. Other children were erroneously institutionalized as “morons” even though tests showed them to be normal.

Rep. Thomas Sannicandro (D-Ashland) has filed a bill seeking a state apology for alleged civil rights violations, and Rep. Thomas Stanley (D-Waltham) has filed a bill seeking a formal investigation of the misclassifications of patients.

“Everybody there was abused, and we should be all-encompassing as a commonwealth and say we made a mistake,” said Sannicandro, whose own son has Down syndrome.

See also:

The State Boys Rebellion, book by Michael D’Antonio

The voice of a lost generation; Freddie Boyce survived neglect at Fernald, radiation experiments, and told the story — Boston Globe

From the Atlanta Journal-Constitution:

Some 200 disability advocates rallied at the Georgia state capitol Monday, dispersing only after securing a meeting with Gov. Sonny Perdue’s chief of staff. The meeting is scheduled for Tuesday.

The protesters are seeking state compliance with the Supreme Court’s 1999 Olmstead decision, which directed states to provide community-based supports for people with disabilities rather than continue unwarranted segregation in institutions. They are members of ADAPT, a national disability rights organization.

“It’s a shame that 10 years after Olmstead, more people are going into nursing homes than before, “said Bernard Baker, an organizer with ADAPT’s Atlanta chapter. “Living in the community isn’t a privilege, it’s a civil right, and we are being denied our civil rights.”

Earlier post here.