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Barriers to health care for people with disabilities

People with disabilities face an array of obstacles to getting health care, and budget cuts and market-oriented “reform” of Medicaid could be making things worse.

Results from a participatory research study of the health care experiences of Medicaid beneficiaries with disabilities will be presented at a town hall meeting Thursday afternoon, with health care consumers and providers commenting on their experiences and possible solutions.

The town hall takes place Thursday, June 27, at 1:30 p.m., at Access Living, 115 West Chicago Avenue.  The study was conducted by Access Living’s health policy team and UIC’s Department of Occupational Therapy.

Relatively simple problems, like access to clinics and exam tables for people who use wheelchairs, can lead to significant gaps in care, said Marilyn Martin, policy analyst at Access Living.

Many are examined in their wheelchairs instead of on exam tables, though that’s not considered an acceptable practice, she said.  As a result, pap smears and prostate exams are often not given to people in wheelchairs.

With mammogram units that aren’t accessible for mobility-impaired patients, many people go years without cancer-detection exams — and mortality rates for breast and cervical cancer are significantly higher for people with physical disabilities, Martin said.

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Warning on Social Security, Medicare cuts

Seniors, people with disabilities, and the poor shouldn’t be pushed over a “fiscal cliff” manufactured by politicians.

That’s the message of a coalition of senior, disability, community and labor organizations that is hosting an accountability sessions with local members of Congress, Tuesday, October 30, 4 p.m., at the Chicago Temple, 77 W. Washington.

Representatives Danny Davis and Jan Schakowsky have confirmed their attendance, and others are expected, said Gary Arnold of Access Living.

Sponsors of the event include Access Living, Illinois Alliance of Retired Americans, IIRON, Jane Addams Senior Caucus, Jobs With Justice, and the Lakeview Action Coalition.

They’ll ask legislators to oppose cuts to Social Security, Medicare, and Medicaid in any resolution of the impasse over the debt ceiling to be considered in Congress after the November 6 election.

Neither Democratic nor Republican proposals – nor automatic cuts set to go into effect if no deal is reached – are good options, said Tom Wilson of Access Living.

Democrats would reach deficit reduction goals with a mix of heavy budget cuts and increased taxes on the wealthy; Republicans have proposed only spending cuts.  A “sequestration” plan if no deal is reached would involve 8 percent across-the-board cuts in domestic and military spending.

“Any of the solutions they’re talking about would drive us right back into recession, throw a lot of people out of work, and send the economy into a downward spiral,” said Wilson.

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State settles on nursing home alternatives

The settlement Tuesday of the third of three lawsuits charging that Illinois violated the rights of people with disabilities by forcing them into nursing homes is a big step, especially given the state’s resistance on the issue over much of the past decade.  But much remains to be done, said a disability rights advocate.

The agreement to establish a $10 million fund to help nursing home residents get their own housing is “a big breakthrough,” said Tom Wilson of Access Living, one of the groups that sued the state.

The groups charged that the state violated the U.S. Supreme Court’s 1999 Olmstead decision which found that state policies which force people with disabilities to live in nursing homes violate their civil rights.

In addition to pressure from the lawsuits, “we finally have a governor who gets this,” Wilson said.  Former Governor Rod Blagojevich was the target of protests when he cut funding for community-based programs and reopened a state institution.

Moving forward, the state needs to develop a system to help people who’ve been hospitalized transition to their own homes, Wilson said.

Patients can lose their homes during long-term hospitalizations, and patients who are discharged to nursing homes for short-term physical rehab can lose their financial independence, he said.

Other states have protections against nursing homes forcing residents to sign over their Social Security or SSI checks, Wilson said.

Illinois has the highest reliance on nursing homes for long-term care – and the least support for small integrated settings — of any state in the nation.  Nursing home care is much more expensive than community-based care – but the nursing home industry is a major contributor to campaign funds.

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Disability advocates: budget cuts are costly

Budget cuts proposed by Governor Quinn will devastate services allowing people with disabilities to live in community-based settings and in their own homes, forcing many out of work and into nursing homes — thus costing the state more than the cuts will save, according to Access Living.

People with all types of disabilities will rally against the cuts (prior to an Illinois Senate Human Services Committee hearing), Thursday, February 24, 9 a.m. at the State of Illinois building at Dearborn and Randolph.

Cuts to home care will raise state costs

Cuts in the state budget to programs that help people with disabilities live in their own homes will end up forcing many into insitutions – and costing the state more money than it would have spent on community-based care.

That’s the contention of a broad coalition of organizations representing people with physical, developmental, and psychiatric disabilities, who will rally against budget cuts tomorrow (Monday, July 19) at 11:30 a.m. at the State of Illinois building, Randolph and Dearborn.

“The disability community understands that budget cuts impact almost everyone and every service in Illinois, but most of the cuts to disability services don’t make sense,” said Gary Arnold of Access Living.  He said most of the cuts are to community-based services, “which cost less money than institutional services.

“If the community services are cut, more people will be forced into institutions, costing the state more money.”

Advocates have identified over $100 million in cuts to community services for people with developmental disabilities or mental health issues, Arnold said.   He said the cost of institutional care is dramatically higher than for community-based care.

“We think a rebalancing of the budget would give people more choice and be more cost-effective,” he said.

Life outside the nursing home

Some 250 people with disabilities who have been able to move out of nursing homes through Access Living’s deinstitutionalization program have been invited to a celebration of independent living tomorrow, Friday, April 16, at 1 p.m. at  Access Living, 115 W. Chicago.

At the event, people with disabilities will talk about life in institutions and about their experiences getting out and living independently.

Access Living has helped nursing home residents move into their own homes with personal assistance services since 1998.  The disability rights group helps individuals find an apartment, provides the security deposit, first month’s rent, and furnishings, and offers a monthly support group for people who are new to living on their own.

Despite a Supreme Court ruling more than ten years ago that people with disabilities have the right to alternatives to nursing home care, Illinois ranks among the worst states in providing integrated settings.  Three recent lawsuits by Access Living, Equip for Equality and others have challenged the state’s funding system, which heavily favors nursing homes; settlements are pending in two of the cases.  Advocates have called for changing the funding system so that individuals have greater choice.

There are over 30,000 people living in nursing homes in Cook County, and surveys have shown that one-third of elderly residents and 60 percent of non-elderly residents would prefer receiving long-term care services in their own homes.

Home-based services are far less expensive than nursing home care — but the nursing home industry is well-connected politically.

Until Illinois reforms its system to provide community-based choices, as required by the Americans with Disabilities Act and the Supreme Court’s Olmstead decision, “Access Living, through its deinstitutionalization program, is helping people achieve independence, one person at a time,” said Gary Arnold.  “It’s not an easy process,” he adds.

Last year Newstips interviewed one veteran of the deinstitutionalization program.  “It feels like I broke out of jail,” said Roonie Bradford, who said he continues trying to help others he knew in institutions get out.

Closing La Casas ‘not an improvement’

For the second year in a row, La Casas Occupational High School appears on CPS’s list of closing schools.  La Casas, 8401 S. Saginaw is the only therapeutic high school in CPS.

Last year the disability rights group Access Living opposed closing the school, arguing that students with emotional disturbances would be ill-served by transfer to private therapeutic schools.  CPS removed La Casas from its “hit list,” saying “more time was needed to work with parents on best options for all students.”

This year CPS says some students will be transferred to Montefiore Special School, a CPS middle school which will be expanded to include high school age students.  Others will be sent to private schools.

“It’s not an improvement,” said Rod Estvan of Access Living.  “Just closing the school doesn’t solve the problem.”

The group’s concerns with private schools remains – particularly the lack of public information on achievement and other data not available to parents and advocates, as well as lack of options for reintegration.

Access Living has advocated for La Casas to be relocated in a secure, separate wing of an existing high school which has vocational programming.

Estvan says that offering hands-on learning for these students is “critical.”  “Unless you have real vocational programs for these kids, it’s real hard to engage them,” he said.

Nursing homes

Truthout talks with Barry Taylor of Equip for Equality about the Tribune/ProPublica investigation of Illinois nursing homes and the governor’s nursing home safety task force.

Illinois has the highest reliance on nursing homes in the nation, costing the state many millions of dollars each year and segregating residents who could be living in community settings, especially with supportive housing.



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