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Wisenberg and Ervin

Two of Chicago’s best writers are featured in the November issue of the Progressive.

S. L. Wisenberg writes with biting humor and unnerving honesty about breast cancer and her “post-mastectomy dilemma.”

Mike Ervin writes of his “deep dread” as state legislators debate budget cuts which could eliminate the home assistants that enable him to live a full life – or even just get out of bed in the morning.

Disability and poverty

Disability accounts for poverty in far more cases than we commonly realize — and people have a greater chance of experiencing disability, too, according to a new report (pdf) from the Center for Economic and Policy Research.

About half of working-age adults who experience poverty have a disability; of those who are poor for at least three years, two-thirds are disabled. 

Food shortages, evictions, utility shutoffs, skipping medical care — all are more common for people with disabilities.

The report also finds that male household heads in their mid-50s have a 53 percent chance of having been disabled and a 19 percent chance of chronic and severe disability.

“These new findings show that any serious attempt at an agenda to reduce income poverty must take disability into account as both a cause and consequence of poverty,” said author Shawn Fremstad.  Health insurance, paid sick days and sick leave, and modernization of Social Security disability are of particular importance, Fremstad said.

Not far above people with disabilities are people who care for people with disabilities, who are among the lowest-paid workers.

ADAPT at 25

The Chicago chapter of ADAPT celebrates 25 years of nonviolent direct action in the service of disability rights at its annual awards ceremony this Friday.

Originally named Americans Disabled for Accessible Public Transit, ADAPT was founded in Denver in 1983 by Rev. Wade Blank, taking the civil disobedience tactics of the civil rights movement of the 1960s to push for civil and human rights for people with disabilities.

R. Kent Jones, a civil engineer for the city, returned from a visit to Denver that year “saying we need to do the same thing here,” recalls writer and disability activist Mike Ervin.

Chicago ADAPT’s first action, in April of 1984, was a sit-in at the CTA’s offices demanding the agency stop buying buses that weren’t accessible, Ervin said.

Jones, who died in 2004, was the lead plaintiff in a lawsuit against the CTA, charging that the agency’s failure to accommodate people with wheelchairs violated their civil rights. The five lawyers who represented ADAPT — including Robert Gettleman, now a U.S. District Court judge — are being honored Friday.

On Martin Luther King Day of 1988 a Chicago Human Relations Commission judge ruled in Jones’s favor, ordering the CTA to begin buying buses with wheelchair lifts.

Accessible CTA buses, the group’s first victory, have made a big difference for many people, Ervin said. But equal access to public transit is still an issue, he added. Barely half of the CTA’s rapid transit stations accommodate people with wheelchairs — and a Beachwood Reporter/Chicago Talks report earlier this year showed that equipment isn’t functioning in many of them.

In 1990 the Americans with Disabilities Act was signed, enacting into law the principle ADAPT has propounded — that equal access is a civil right.

The group’s major focus since then has been directing public resources toward home care as an alternative to institutional care. In September 2007 a national ADAPT action in Chicago blockaded state offices as well as the offices of the American Medical Association and AFSCME, the union that represents institutional care workers. They won a restoration of cuts to home care by the state, and an endorsement of legislative reform by the AMA.

Nationally, the group is focused on passing the Community Choice Act, sponsored in the House by U.S. Representative Danny K. Davis, which would put federal funding for community-based attendant services on an equal footing with subsidies for institutional care.

Perhaps ADAPT’s greatest accomplishment is changing consciousness, particularly among people with disabilities. It turned out that sit-ins were even more effective when carried out by people in wheelchairs — and that such mass actions were highly empowering for a group that had been shut out of the mainstream.

The disability movement in Chicago has created “one of the strongest, most well-rounded disability commmunities in the world,” Ervin said. Beyond political activism there’s the disability studies program at UIC and a thriving arts and cultural scene. And in part through Access Living’s youth programs and ADAPT’s emphasis on leadership development, young leaders continue to emerge, he said.

ADAPT’s 25th anniversary gathering takes place Friday, June 31, starting at 5:30 p.m. at Access Living, 115 W. Chicago.

Disability leaders at White House

Marca Bristo of Access Living and Karen Tamley, commissioner of the Mayor’s Office for People with Disabilities, will be at the White House tomorrow as President Obama signs the UN Convention on Rights for Persons with Disabilities.

The UN adopted the convention in 2006, and well over a hundred countries have ratified it, said Gary Arnold of Access Living.  As president of the U.S. International Council on Disabilities, Bristo was a principle player in the movement toward the U.S. becoming a signatory to the convention.

The convention represents a major shift from approaching disability as a social welfare issue toward considering it a human rights issue, Arnold said. 

Disability rights settlement

Opponents of a consent decree that would settle a lawsuit over the state’s failure to offer community services to people now in institutions “fear the proposed agreement would jeopardize the future of larger facilities,” the Tribune reports.

In fact “there’s huge pent-up demand” with “waiting lists everywhere,” said Tom Wilson of Access Living, one of the groups bringing the lawsuit, which charges the state’s failure to provide community-based options violates the Americans with Disabilities Act (see last month’s Newstip).  If 10 percent of an institution’s residents chose community placements, their places would be filled immediately, he said.

“If any institutions were to shut down, it would be the substandard ones, where people are dying, where everyone wants to get out,” he said.  And while opponents of the settlement cite the state’s “already inadequate budget,” proponents point out that community-based care is far less expensive than institutional treatment.

Today, Illinois ranks 51st out of U.S. states and the District of Columbia in serving people with developmental disabilities in small integrated settings, according to Equip for Equality. Most people with developmental disabilities seeking residential services are only offered placements in institutions — and disability rights advocates view that as a civil rights violation.  (So does the U.S. Supreme Court.)

An agreement between plaintiffs and the state was announced last November.  Two other lawsuits under the Supreme Court’s 1999 Olmstead decision — covering the elderly and people with physicial disabilities in nursings homes — are pending.

Olmstead at Ten: State still favors costly nursing homes

Amid its recurring budget crisis, the State of Illinois has yet to comply with a ten-year-old Supreme Court ruling that would save money by giving nursing home residents the choice of moving out and obtaining less expensive community services.

And projected budget cuts could increase the cost of noncompliance.

Disability rights advocates will gather Monday (June 22, 11:00 a.m., State of Illinois Building, 100 W. Randolph) to celebrate the tenth anniversary of the U.S. Supreme Court’s decision in Olmstead v. L.C., which found that denying people with disabilities alternatives to institutional care violates the Americans with Disabilities Act.

Ten years later, Illinois’ method of allocating long-term Medicaid funds — heavily weighted toward nursing homes — forces people who want to live with their families and friends into institutional settings, because community-based services are chronically unavailable, said Gary Arnold of Access Living.

And there’s imminent danger that it could get worse — Illinois “could move backwards on Olmstead if the current budget is implemented,” he said. Cuts in funding for home services — providing the personal assistants who allow people to living independently — could force more people into nursing homes.

Since home services are far cheaper than nursing home care — costing half as much or less, by one estimate; saving as much as $36,000 a year per individual, by another — the state’s failure to comply only adds to its fiscal problems. It reflects the political connections and large campaign contributions of the state’s nursing home lobby, advocates say.

In recent years, efforts in the state legislature to bring Illinois’s funding system for long-term care into compliance have been blocked, and the state has fought lawsuits charging it with violating Olmstead (though a settlement in one case is pending judicial approval).

After disability activists pressured the state to participate in a federal grant program to encourage deinstitutionalization, a maze of state agencies took so long working out departmental perogatives and budgets — and created such a complex bureacratic process — that after three years, only one person has been moved out of an institutions, said Tom Wilson of Access Living.

In the past twelve months, Access Living has helped three dozen people move out of nursing homes and into community settings, he said.

Along with Access Living and the ACLU, Equip for Equality has filed three class action lawsuits charging Illinois with violating Olmstead. In Ligas v. Maram, filed on behalf of 6,000 people with developmental disabilities who now live in large private facilities, a settlement has been reached and is set to be ruled on next month, said Barry Taylor of Equip for Equality. The settlement would require annual independent reviews for all residents of such facilities, and establish a timetable for moving those who so choose into community settings, he said.

Similar settlements in two similar suits — one on behalf of 5,000 people with mental illness living in private institutions and one for 30,000 people with disabilities in nursing homes — would “move us along very far toward compliance,” Taylor said. He notes that the state is still litigating those suits, as it did with Ligas up to the trial date last year. But there’s also been a change of administration since then, he adds.

Roonie Bradford, who’ll join Taylor at the speaker’s podium Monday, just got out of a nursing home in September, thanks to Access Living’s deinstitutionalization program. He ended up there without intending to: after a landlord took his rent but didn’t pay his water bill, Bradford went to the police station, the city’s Department of Aging was called, and he found himself spending several months in a series of homes.

He tells of weekend passes being arbitrarily revoked, and nurses refusing to give him pain medication for severe arthritis according to his prescription. Now 59, he’s used a wheelchair for years, since being seriously injured in a fall while working as a window washer.

In one nursing home a staff member put him in touch with Access Living. In the next, the business office demanded he sign his diability check over to them. “They were already getting $4,500 from the state for me,” he said. “They told me I owed them another $1,300.” He called a friend who took him out to lunch, and he never returned. Within days Access Living’s program workers had approved an apartment for him and provided a security deposit and first month’s rent check, along with furniture and kitchenware.

“It feels like I broke out of jail,” said Bradford. “I’m independent. I can sit in my yard when I want to.”

The nursing homes “don’t want to let you go because they want that money they get from the state,” he said.

“Now I visit everyone I know in nursing home and bring them folders with information on how to get out. They won’t let me into the wards because they know I’m with Access Living, but they let me go in the dining room.

“I want to help as many people as I can to get out. Because it’s not a nice place to live.”

Little people and NBC

Little People of America is calling NBC to task for the April 5 episode of “Celebrity Apprentice,” which repeatedly portrayed people with darwfism as objects of ridicule.  LPA vice president Gary Arnold (also of Access Living) comments:  “An incarnation of archaic stereotypes that have prevented many people of short stature from pursuing opportunities and reaching their potential, the episode deeply angered thousands of people with dwarfism around the country.”

Disability Pride Parade goes national

The U.S. House of Representatives has declared July 26 — the anniversary of the signing of the Americans with Disabilities Act and the date of Chicago’s fifth annual Disability Pride Parade — as Disability Pride Parade Day, inviting the entire nation to “join in celebrating the pride, the power, and the potential of people with disabilities,” parade organizers report.

“I am happy to see the United Sates House of Representatives officially recognize what people with disabilities have long known – that we have the right to be proud of who we are and what we have accomplished and can accomplish, now and in the future,” said parade founder Sarah Triano.

The parade steps off at 11 a.m. on Saturday, July 26, from Van Buren and Plymouth Court, moving down Dearborn to a rally at Daley Plaza.  This year’s grand marshall is former U.S. Rep. Tony Coelho of California, sponsor of the ADA in 1990 and currently chair of the Epilepsy Foundation.

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