Illinois near bottom in caring for disabled, ranked 48th of 50 states | July 14, 2012

An Algonquin mother who abandoned her disabled daughter more than two weeks ago in a Tennessee bar said she did it because of a lack of state assistance and options in Illinois.

As Tennessee officials care for 19-year-old Lynn Cameron and discuss what, if any, charges can be brought against her mother, Eva Cameron, advocates say the state of Illinios is in dire need of improvement to deal with its disabled people.

“We have situations every day with families who feel as though they have reached the end of their abilities or resources to care for their disabled children,” said Cindy Sullivan, executive director of Options and Advocacy for McHenry County.

Sullivan said that while resources are scarce, some are available. “Had we known about [Lynn Cameron], we would have helped her,” she said.

The Crystal Lake-based agency provides services to people with developmental disabilities – services that are becoming more difficult to provide because of a lack in state funding and mounting debt.

The agency is a starting point for families seeking funding to care for their disabled children, both young and old, although options are very limited, Sullivan said.

To get funding for residential services, a disabled adult must meet state crisis criteria, which include having become homeless, having been abused or neglected, or having incurred complete loss of caregivers, she said. The Office of the Inspector General through the Illinois Department of Human Services typically takes control of the abandoned disabled.

The office assists agencies and facilities in prevention efforts by investigating reports of abuse, neglect and mistreatment in a timely manner, to foster humane, competent, respectful and caring treatment of persons with mental and developmental disabilities, according to the Illinois Department of Human Services website.

The disabled also are eligible for special education through local school districts, which ends when they reach the age of 22, said Sullivan, who is a single mother with a disabled 29-year-old daughter

“My greatest fear is that she will outlive me because my concern is that no one can or is willing or able to care for my daughter the way that I have,” she said. “That is a very difficult thing to articulate, but there are many other parents in the same situation.”

Illinois ranked 48th of 50 states and the District of Columbia the past two years in Medicaid services for individuals with intellectual and developmental disabilities, according to an annual study by United Cerebral Palsy, an international advocacy group for disabled children and adults.

The ranking – called “The Case for Inclusion” – breaks down states’ performance by investigating the way disabled people live in their communities, their satisfaction levels and accessibility of services.

“We have a long, long way to go,” said Peggy Childs, executive vice president of United Cerebral Palsy of Greater Chicago. “There is a dire need for services for adults with disabilities. The state has strong institutional services, but we need to move to a more community-based model.”

If Gov. Pat Quinn’s highly debated proposal to close four state institutions, including the Jacksonville Developmental Center, were approved, Illinois could be the breakaway low performer next year, the study states.

“We should be ashamed of ourselves,” Sullivan said, adding that because there is no state mandate, meaning fewer services for adult disabled people.

The waiting list statewide for parents and caregivers seeking assistance in caring for the disabled has reached more than 21,000, according to the Prioritization of Urgency of Need for Services database.

More than 1,000 on the list are scheduled to receive services this fiscal year in the wake of class-action lawsuits filed against the state, said Tony Paulauski, executive director of Frankfurt-based The Arc of Illinois, a statewide advocacy organization for the disabled.

“Illinois has been negligent in providing services and whittling away at the waiting list,” Paulauski said. “It’s like hitting the lottery when you are selected.”

McHenry County has 5,236 residents with development disabilities based on 2010 Census data, 935 of whom are receiving services, Sullivan said.

That includes 12 group homes serving 89 people, 110 families receiving respite services, 168 people receiving home-based services, and the others getting support such as case management and advocacy, she said.

“We know it’s an uphill climb,” Sullivan said. “I’d hate to be waiting for assistance.”

Article By LAWERENCE SYNETT | Northwest Herald


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