Amy Walker was diagnosed with cerebral palsy when she was 3 years old.
She grew up at home in Watseka, Ill. and was cared for by her parents. Walker, who is now 28, has been told that not too long ago doctors would have probably advised her parents to send her to live in a state institution.
Walker lives in her own apartment in Decatur, Ill., and works for Illinois Voices, a self-advocacy initiative for people with developmental disabilities funded by the Illinois Department of Human Services. Walker advocates for people with developmental disabilities to have access to community-based housing.
“Everyone deserves an equal chance to be a part of their community and not to be separated or segregated,” Walker said.
However gaining access to community-based housing in Illinois is not so easy a proposition.
Illinois dead last
Illinois ranks last, or 51st among the states and the District of Columbia, in the number of people with intellectually and developmental disabilities (I/DD) living in community-based housing of six persons or fewer. This ranking comes from a 2008 University of Colorado report, The State of the States in Developmental Disabilities.
The ranking is telling of a state that has chosen to maintain large institutional settings for its citizens with I/DD, creating frustration for advocates of community-based living.
Ellen Garber Bronfeld is one such advocate. Her son, Noah, 22, who has autism, lives on the North Shore and works part-time at the Northbrook branch of the Anixter Center, a non-profit agency that provides services to people with disabilities.
“When I look at Noah, I think to myself, why would I want him to be in a large institutional setting?” Bronfeld said. “Living with roommates not of his choice … and being protected all his life in a way that violates his ability to access the community.”
Community-based and institutional housing are fundamentally opposite living environments. Where institutions are more of a hospital setting in which residents are generally segregated from those without disabilities, community-based living is a community-integrated setting that strives for disabled individuals to have non-disabled neighbors.
Those who support institutional care say it’s the best option for some, especially those with extensive medical needs or behavioral issues because at institutions, resources are concentrated and staff is readily available 24 hours-a-day.
However for those like Bronfeld, institutional-based care is fundamentally a form of segregation that violates human rights principles and should not be a part of Illinois’ system of caring for people with I/DD, advocates say.
For decades, the national trend of housing options for people with I/DD has been heading in the direction of community-based living. According to the University of Colorado report, the number of people living in state-operated institutions peaked in 1967 with 194,650 individuals living in 165 state facilities. Since then, the number of people in these state facilities has decreased by an average of four percent per year.
The report indicated that the following states no longer run state-operated institutions: Alaska, Hawaii, Indiana, Maine, New Hampshire, New Mexico, Rhode Island, Vermont and West Virginia. The District of Columbia has also closed down all of its state-operated institutions.
New Jersey, which ranked 41st in the report, has decided to take an active role in offering community-based living options for every individual who requests it.
The New Jersey Department of Human Services’ Division of Developmental Disabilities released in May 2007 an Olmstead Plan known as “Path to Progress.” in which they outlined how they will transition individuals from state-operated developmental centers to the community by 2015. Olmstead refers to the 1999 Supreme Court case which held that states must place disabled people in community settings if that placement is appropriate and a less restrictive setting for the affected individual.
In Illinois, 14,406 individuals with I/DD residing in out-of-home residential settings live in facilities with seven or more beds. That is 40 percent higher than the national average, according to the University of Colorado report. There are nine state-operated developmental centers in Illinois, where more than 2,700 residents lived in 2006. These residents are cared for by approximately 4,500 state employees.
The shift to community-based settings
Despite the large percentage of people living in an institutional setting, the state is moving away from a reliance on institutional care.
“People aren’t just going into [state-operated developmental centers] anymore,” said Krescene Beck, project coordinator of Illinois Voices. “You have to have very significant behavioral issues. You have to be a danger to yourself or others on an extreme basis.”
This year the Illinois Council on Developmental Disabilities, a state agency geared towards addressing the needs of people with I/DD, released the Blueprint for System Redesign, a report that strategizes on how to improve the quality of life for people with I/DD in Illinois. The report was assembled by the Human Services Research Institute, a non-profit organization that aids government agencies in providing services for people with developmental, physical and mental disabilities.
The blueprint calls for significant changes in Illinois by 2014. Some of these changes include the support of 2,300 additional individuals in community-based living, the downsizing of the number of state-operated facilities from nine to three, and expanding community support for those with severe behavior challenges and medical needs.
Marielle Sainvilus, communication manager for the Illinois Department of Human Services, said the department is considering the blueprint recommendations, but has not made any official decisions on implementing them.
The national push for community integration of people with I/DD emerged out of a convergence of movements during the late 1960s and early 1970s, according to Glenn T. Fujiura, associate professor in the department of disability and human development at the University of Illinois at Chicago.
What Fujiura called the “perfect storm of events” included innovative European models of care for people with disabilities that were based on human rights, the activism of parents whose children with disabilities were being denied access to education, and the civil rights movement which was premised on equality for every individual.
“There was an increasing understanding that the physical segregation of a whole class of people was simply wrong on a number of levels,” Fujiura said. He added it was during this period that the state policies shifted towards moving people with I/DD out of big isolated facilities and into the community.
Litigation for change
Those who support community-based care are taking legal action to hold the states accountable for its lack of community-based living. The American Civil Liberties Union of Illinois and other legal organizations are representing plaintiffs in three class-action suits, Ligas v. Maram, Williams v. Blagojevich and Colbert v. Blagojevich to defend the constitutional rights of people with I/DD, mental illnesses and physical disabilities to have access to community-based care.
Their legal argument relies on the Supreme Court Olmstead decision, in which Lois Curtis and Elaine Wilson, two women with developmental disabilities and psychiatric conditions, brought a case against the state of Atlanta for failing to put them in community-based care after treatment professionals concluded that both women were capable of functioning in such an environment. The basis for their suit came out of the Americans with Disability Act of 1990, which calls for the most integrated of settings for people with disabilities. The Supreme Court ruled that unnecessary institutional care is considered discrimination and the state could not defend keeping people with disabilities in institutions due to lack of funding.
Ligas v. Maram was filed by nine people with I/DD, either living in state institutions or at risk of being sent to live in such facilities, who were denied requests to live in the community. Williams v. Blagojevich was filed by two individuals with mental illnesses who were forced to live in nursing homes in Chicago, despite expressing a desire to live in the community. Both cases were filed in 2005.
The most recent case, Colbert v. Blagojevich was filed by five individuals with physical disabilities who live in nursing homes and were also denied access to live in the community. In an Equip for Equality press release from August 2007, one of the plaintiffs in the case, Lenil Colbert, described his experience living in a nursing home.
“I have to eat when they tell me to,” Colbert said. “I have to go to bed when they say it's time and I can't visit my family and friends without permission.”
Following the money
Financial support for people with developmental disabilities in the United States is handled by the government, mostly through Medicaid funds. In 2006, Illinois spent $819.7 million serving people with I/DD, or 54 percent of the total cost of services for people with I/DD. The federal government spent $668 million, or 44 percent of the total cost. Local governments spent $28.6 million, or the remaining two percent.
For an Illinois resident with I/DD, the first step to accessing funding for housing and day services is filling out a Prioritization of Urgency of Need for Services, or PUNS, form. A state employee assesses the needs of the individual and takes the next steps in providing them services. The common predicament for those who want access to community-based living is being put on a waiting list, with a wait time as long as 10 years for some, due to lack of spaces in community-living settings.
The state offers two main types of community-based housing options: Intermediate Care Facilities for the Developmentally Disabled (ICF/DD) and Community Integrated Living Arrangements (CILA), which are generally smaller-sized facilities. In Illinois, it costs about $50,800 yearly to support an individual living in an ICF/DD and about $46,000 to support someone living in a CILA.
In comparison, the cost to support an individual in a state-operated institution is about $130,007 a year. The lower cost of care per individual for those who live in community-based housing is an argument that advocates use in support of shifting services for people with I/DD to the community entirely.
The main reason for the cost difference is that those who live in institutions generally need more intensive medical care. Another reason is the salary difference of employees of state-operated facilities and those who work at community-based facilities.
Beck of Illinois Voices said that in Southern Illinois, entry-level employees at state-operated facilities make an average of $10 an hour, while those who work in community-based settings make about $7.50 an hour.
Despite the lower cost of care per individual living in a community-based setting, there are major sustainability problems for community-based care providers due to insufficient funding from the state, according to Beck. This is in part due to the state not accounting for increases in the cost of living due to inflation when allocating money foir community-based care, she noted.
“I have known [community] agencies that have gone up to the governor or gone up to someone at the Department of Human Services and said here’s the keys, [the facility is] all yours,” Beck said.“I don’t hear of those types of things happening in a state-operated facility.”
Beck said that agencies regularly complain that they do not have enough money to pay staff and provide adequate services for individuals living at their facility.
One way to increase funding for community-based housing is to close Howe Developmental Center, a state-operated facility in Tinley Park that serves over 400 residents. Howe was decertified in April 2007 because of reports of substandard basic care for its residents. The state has kept Howe open and must cover the approximately $30 million of federal funding with state money.
Tony Paulauski, executive director of the ARC of Illinois, which provides services to people with developmental disabilities, travels to Springfield often to put pressure on the legislature to allocate more state funding for people with I/DD in Illinois, especially for an increase in community-based housing and services.
The 2009 state budget that was recently passed included increased funding for community-based housing costs. One example is a fifty cent increase for non-executive staff providing services for people with developmental disabilities and mental illnesses in the community. Paulauski called the budget increase as well as the $7 million that is to be allocated for transitioning those who want community-based care off of waiting lists “good news.”
However, whether or not this funding will survive depends on how the governor and the legislature work out their differences in what the governor has said is a $2.1 billion budget imbalance.
Community-based activism
Groups that advocate on behalf of people with developmental disabilities, such as the Arc of Illinois, play an important role in educating Illinois legislators on the needs of the disabled population. Recently, people with disabilities themselves are participating in political activism work to advocate for their own needs.
Dan Birkhahn-Rommelfanger, coordinator of grassroots advocacy at the Anixter Center, has been working with people with disabilities to help facilitate their involvement in such political work for the past two years. He said people with disabilities can make a unique contribution as self-advocates that others cannot.
“You’re always going to have more enlightened policies if you include the group of people that you are making policies for because you’re addressing what they actually want and need,” Birkhahn-Rommelfanger said.
Part of his job at the Anixter Center is helping people with disabilities understand the issues that affect their daily lives. Another part is giving people who are ready to advocate an opportunity to do so, which mostly takes place at town hall meetings to which Illinois legislators are invited.
Sharon Cosgrove, 51, and Josie Wilson, 41, who both live in Anixter Center apartments in Chicago, are among the group of self-advocates that Birkhahn-Rommelfanger has been working with. Cosgrove and Wilson each support community-based living because of their personal experiences living in state-run institutions.
When she was 16, Wilson’s parents placed her at Chicago Read Mental Health Center, where she said workers tied people down to their bed when a resident had a discipline problem. She also described being on heavy doses of medication during most of her time at Read.
“They would shoot me up with medicine and I didn’t know if I was coming or going,” Wilson recalled.
Cosgrove had a similar experience while also living at Read. Birkhahn-Rommelfanger said that Cosgrove’s political activism was sparked after a town hall meeting at which Senate Majority Caucus Whip Donne Trotter (D-17th District) was present. At the meeting Cosgrove discovered that Trotter, who expressed support for the continued operation of state-run institutions, had never visited one himself. Her response was: “Are you kidding me?”
The advocacy work by individuals like Wilson and Cosgrove is extremely important to creating change to policies that affect people with disabilities, according to Birkhahn-Rommelfanger.
“They can advocate not just with facts and figures but with their personal story,” he said. “That is 100 times more powerful than someone going in with a really well researched PowerPoint presentation.”
# as posted by : Medill Reports: Chicago : by Marisol Rodriguez
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