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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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Engaging communities and counting classrooms

If the “community engagement” hearings recently held by CPS were intended to rebuild broken trust, as Barbara Byrd-Bennett has said, they might be counted as the first failure of a long season.

“Up until a couple weeks ago, I  believed what CPS said about utilization and a budget shortfall, and that they had to close schools,” said parent Beth Herring at a recent meeting of Hyde Park parents and teachers.

Then she went to a community hearing.

“It is not community engagement to invite people to come and beg to keep their schools open,” she said.   “Maybe some schools need to be closed, but there has to be a much more serious process, not just giving people two minutes to literally beg to keep their schools open.”

At a West Side hearing last week, an alderman put it more directly:

“This process is insane,” said Ald. Jason Ervin (29th).  “It pit schools against one another, it pits communities against one another.  This is no way to run a school system.”

***

This weekend, the Grassroots Education Movement and the Chicago Educational Facilities Task Force are offering two alternative forums for school issues.  Perhaps CPS and the school board could learn something about open and respectful communications from them.

Point one might be holding meetings at times when working parents and teachers can attend them — apparently not the goal of school board, which postponed its March 27 meeting because it was during spring break.

On Friday, March 8, 6 p.m., GEM is holding a People’s Board Meeting at the First Unitarian Church, 5650 S. Woodlawn.  Parents and teachers from across the city will be speaking on school closings and other issues that CPS doesn’t address, like smaller class sizes, charter expansions, and an elected school board.

GEM is a community-labor coalition; the meeting is envisioned as the first of an ongoing series.  Elected officials have been invited.

On Saturday, March 9, 10 a.m., CEFTF holds its monthly Second Saturday session at the Humboldt Park Library, 1605 N. Troy, focused on the ten-year facilities master plan, another subject CPS isn’t discussing.  The district is required to produce a draft by May 1.

CEFTF, a task force of the state legislature, is asking schools to report on whether CPS has engaged them in the planning process, and the task force is soliciting the kind of fine-grained information about school use that CPS’s utilization standard completely ignores.

***

That’s one of the problems at the dozens of community hearings on school closings in recent weeks, where thousands of parents and teachers have turned out and make eloquent and emotional pleas for their schools.

CPS and the people in its schools are using different utilization standards.

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Closing schools without a plan

With the school utilization commission issuing an interim report – and schools chief Barbara Byrd-Bennett responding to a parents group’s inquiry about school closings – the task force created last year by the legislature to monitor school facilities policy in Chicago is holding the first of four community hearings on Saturday.

The Chicago Educational Facilities Task Force hearing takes place at 10 a.m. on Saturday, January 12 at the New Mount Pilgrim Baptist Church, 4301 W. Washington.

While it’s likely to provide a forum for wide-ranging community concerns about CPS school closing plans, the hearing is focused on gathering public input for the draft ten-year facilities master plan that’s due May 1.

As mandated by the legislature, that process is supposed to include input from every school in the district on its long-term educational vision and facility needs.  But CPS has yet to unveil any plans to engage school communities in the process, said Cecile Carroll of Blocks Together, chair of CEFTF’s master planning committee.

That could be because CPS is focused on announcing a huge wave of school closings – before a long-term plan is done.

Community members “have told the task force that doing more school closings and drastic interventions before there’s a long-range plan in place is ‘putting the cart before the horse’ and just doesn’t make sense,” Carroll said.

***

In its interim report, the school utilization commission appointed by Byrd-Bennett in December calls on CPS to spare high-scoring and improving schools with low enrollments.  And in order to reduce the risk of violent incidents, it calls for no closings of high schools.

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Contract talks should include classroom issues, parents say

A parent group is calling on Mayor Emanuel to expand negotiations with the Chicago Teachers Union to include class size and other issues which CPS has so far refused to consider.

A new petition by Raise Your Hand (available here) calls on the city “to open up talks beyond pay and benefits and find ways to compromise with our teachers on issues that are critical to our schools.”

“We believe that the only way to come to a decent contract and avoid a strike is to give the teachers a contractual voice in some of the work-rules that impact their day and profession,” said RYH in a recent statement.

In negotiations under way since last November, CPS has refused to consider issues it is not legally required to negotiate, including subcontracting, layoff procedures, class size, staffing and assignment, and —  with passage of SB7 last year – the length of the school day and year.

It’s the first time CPS has ruled those issues off the table.

CPS’s refusal to negotiate on non-economic issues is a big reason teachers voted overwhelmingly to authorize a strike, said teacher and union activist Xian Barrett.  “We would never have gotten a 98 percent ‘yes’ vote if it had only been about pay and benefits,” he said.

“If you ask teachers what how they would improve their jobs, they don’t start with better pay, they start with class size, they start with wanting an administration and leadership that works with teachers instead of dictating to them,” Barrett said.

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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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A convention for Chicago’s grassroots

It had the look and the excitement of a political convention, and indeed it was:  a convention of Chicago’s grassroots.

Markers identified sections for delegations from dozens of community groups, and most sections were filled with people wearing brightly colored, matching t-shirts—blue for Action Now in the back corner, Maroon for KOCO in the front, yellow for Lakeview Action Council, orange for Logan Square Neighborhood Association.  Green for Albany Park, orange for Brighton Park.  On one side was a group of young people from Woodlawn, near a section of people, many in wheelchairs, from Access Living.

At the beginning of the New Chicago 2011 mayoral forum, held Tuesday evening at the UIC Forum, members took turns calling out their organizations from the podium, and in turn each section erupted in cheers.

It’s likely to be the largest crowd for a mayoral forum all season – well over 2,000 people — but for some reason, you won’t hear much about it in the city’s mainstream media. (So far Mike Flannery at Fox News Chicago seems to be the only exception, though his report manages to focus on a candidate who wasn’t there; Progress Illinois has some video clips.)

***

Miguel del Valle drew the sharpest distinctions with the pundit’s putative frontrunner Rahm Emanuel — who had declined an invitation and was tied up at a hearing on his residency anyway — and Patricia Watkins emerged as a serious candidate with several specific proposals.

Carol Moseley Braun and Danny Davis stressed their experience with the groups’ issues; for Davis it stretched from his role as the original sponsor of living wage legislation in the City Council long ago to current sponsor of the DREAM Act in Congress.  James Meeks stressed TIF reform and his work for equitable school funding — but didn’t mention the call for vouchers at the heart of the educational program he released Wednesday morning.

Gery Chico drew boos when was asked about food deserts and started talking about Walmart.  He and Meeks left early.

In his opening statement, Del Valle drew the clearest line between his campaign and Emanuel’s, telling the audience, “You understand the need for a neighborhood agenda, not a downtown agenda, not a big business agenda, but a neighborhood agenda.”

When the candidates were asked about immigration reform, Del Valle drew the most sustained applause of the evening, attacking Emanuel as “the one individual most responsible for blocking immigration reform, as a congressman, as chief of staff,” continuing to a passionate crescendo over the rising cheers of the crowd: “How can we expect him to protect the residents of this city’s neighborhoods?”

He also made a clearest distinction with Emanuel’s program for schools: “We can’t continue to set up parallel systems of education, on one track selective enrollment, magnets and charters, on the other track neighborhood schools. It’s time to strengthen neighborhood schools.”

Watkins opened by referencing her background of community organizing, shared with the audience:  “I have marched with you for immigration reform, for criminal justice reform… We have done more as organizers than any politician that you know.”

She called for a program of social investment bonds to encourage “venture philanthropists” to tackle social problems and for a city effort to develop railroad industry jobs.  On immigration she demanded that “ICE stop trolling in Cook County Jail, because we have to keep our families together.”

The candidates were asked about youth issues, immigration, schools, the living wage, and an ordinance devoting TIF funds to affordable housing.

Asked about schools (and school closings specifically), Braun mentioned her sponsorship of school reform legislation that created local school councils, said no closings should happen without community input, and attacked Chico for his record as Board of Education president in the early days of mayoral control.

Chico gave a spirited defense, saying schools were on an upswing when he left his post, and “we built 65 new schools – we didn’t close schools, we built schools.”

Like Davis, Watkins backed an elected school board and an educator to head CPS. “Decisions are being made for us and we are not at the table,” she said.

Her position on school closings and “turnarounds” – “no school needs to close; we can turn around our schools from within” – seemed to contrast with her previous work with groups that turn around schools from outside.  (More here.)

***

It was the neighborhood activists who introduced the various issues who gave the most moving talks:  Jessie Belton of Southwest Youth Collaborative talked about a neighborhood youth who was attacked on the street after being turned away from a youth center that was closed.  Cindy Agustin, a University of Chicago senior whose family moved to Back of the Yards when she was three, talked about the impact of her undocumented status on her dream of teaching elementary school.

West Sider Takaya Nelson, representing Action Now, said that growing up, “I never though college was an option,” and now — as a CPS teacher recruited and trained through the Grow Your Own program — she encourages children to expand their ambitions.

Cira Isidiro, from Illinois Hunger Coalition, described her heartbreak explaining to her daughter why there isn’t enough to eat in the refrigerator, and Debra Geirin, a resident and activist with Bickerdike Redevelopment Corporation, talked about the joy of getting their own place after she and her husband had to live with her mother and her sister’s family for five years.  “A lot of families are doubling and tripling up because there is not enough affordable housing,” she said.

School closings 3

It turns out CPS isn’t closing Andersen School — it’ s just changing boundaries.

In a January 24 press release, CPS listed Andersen among “under-enrolled” schools to be closed and phased out.  A January 23 report to the Board of Education (available at the Catalyst blog) listed Andersen utilization at 47 percent, just below the 50 percent mark it defined as under-enrolled.  That was the figure Arne Duncan cited in a letter to Andersen parents.

Andersen parents, teachers, and supporters argued that rate didn’t take into account legal limits on class size for the school’s several programs for special education.  They said that applying those limits put the school at 58 percent utilization.

At a February 15 hearing CPS sidestepped this issue — and its guidelines on school closing policy — by announcing it was phasing out the school as a boundary change.

That changes the standard that must be met, said Rod Estvan of Access Living.  Rather than showing underutilization, CPS can change boundaries simply to “maximize utilization” at one of two buildings.

Estvan testified Friday that adding in an autism program and pull-out rooms, “a rational approach to space utilization that takes into consideration State Law would give Andersen School a utilization rate somewhere around 65 to 68%.”  That’s right in the middle of the range CPS terms “efficient utilization.”

Estvan noted that students with disabilities at Andersen tested 15 percent higher than the CPS average in reading and nearly 20 percent higher in math.

“On the face of this data Access Living believes that Andersen School should in fact be given some type of achievement award for the effective reading and math instruction the school appears to be providing to students with disabilities, instead of being closed,” he said.

“It’s pretty slick,” Estvan commented today.  “If they can use this standard, they can write schools out of existence all over the place.”

Disability Culture Cabaret

A disability culture cabaret, featuring exhibits, talks and readings by local artists including actor-director Mike Nussbaum, takes place this Friday at Access Living.

Titled “Contagious,” the cabaret launches a new arts and culture program by Access Living which is aimed raising the visibility of an emerging disability culture, said Gary Arnold.

Following a reception at 6 p.m., three visual artists will give talks presenting their work; after that, the Contagious Theatre Revue will present local writers (including Arnold and Mike Ervin) and theater artists reading their work and the work of others.

Nussbaum will join Michael Martin to read from “Shoot” by Lynn Manning, a poet and playwright (and Blind Judo champion) who was blinded when he was shot in a bar fight at age 23.

With an extensive career in theater and film featuring a long association with playwright David Mamet, Nussbaum is also the father of playwright-director Susan Nussbaum, whose work has treated disability issues for many years. Susan also works at Access Living, and she’ll emcee the revue.

The new Access Living Disability Culture Project includes a permanent collection of visual art from artists who have disabilities or who address disability and an archive of multimedia materials and texts, and plans educational programs, rotating exhibits, and public events including readings and film showings.

Contagious: A Disability Culture Cabaret takes place Friday, December 7, 6 to 9 p.m., at Access Living, 115 W. Chicago.



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