Many states are closing facilities for people with severe developmental and intellectual disabilities to the delight of deinstitutionalization advocates and to the dismay of the families of people who reside in these facilities. Families of residents, when asked, overwhelmingly support these specialized facilities for their very severely involved family members. For the most part, families are summarily dismissed by advocates as dinosaurs in a bright new age of inclusion and transformed systems of community care.
Having experienced "the community" for my sons with profound intellectual and developmental disabilities, and knowing other parents in the same situation, I can attest to the fact that living in "the community" does not automatically solve the problems that arise when living with a disability. The system of care is fragmented and people seeking help need to know what to ask for. The availability of services is often a well-kept secret from potential recipients. It can take years for families with the stamina for sustained struggle to cobble together the services needed for a safe and fulfilling life for for their loved one. Disruptions in services and the unavailability of residential options to meet changing needs are the norm, not an aberration. Needless to say, community care should be offered as a choice for people with disabilities, but it has a long way to go to fulfill its promise.
If we listen to families, we can better understand their resistance to community placements for their loved ones and their distrust of the promise of an improved life.
Dave Kassel, in The Real Choices in Care Blog, does listen to families and has catalogued their experiences with facility closures in Illinois and other states. In Illinois families filed suit in February 2013 to stop the state from moving residents out of Murray Center in Centralia, IL, based partly on the state's record with closing another center in Jacksonville, IL, last year and on undue pressure applied to current residents of Murray Center.
"…The families alleged that the administration of Governor Pat Quinn had acted in such undue haste in moving some 30 residents out of the former Jacksonville Center in a matter of days in late 2012 that many residents were hospitalized or arrested, and parents’ rights were trampled….The Jacksonville closure process was touted by Governor Quinn as a 'milestone' in care for the developmentally disabled, but characterized by Murray Parents Association President Rita Winkeler as 'horrible.'"
More from Dave Kassel:
...The Murray parents’ complaint indicates that the transfers that subsequently began from the Murray Center resulted this past Memorial Day in a hospitalization and a near arrest in one case and the placement of a resident in a home under construction in another.
Laurie Stengler, a member of the Murray parents group, told me that in one of the Memorial Day incidents, two residents of the Murray Center had been placed together in a group home against the advice of the Murray staff, who had noted that one of the residents consistently behaved aggressively toward the other.
'They did it anyway,' Stengler said, noting that there was just one staff member on duty at the group home when the aggressive resident pushed the other resident down and began kicking that person in the face. The victim of the attack had to be taken to the hospital.
Other news sources have questioned the quality of care in community homes that Murray Center residents are being offered. This is from WILY radio in Centralia:
...[One home], despite passing an inspection, was found Tuesday to have multiple leaks in the roof, both over the bedrooms and the living room and kitchen area. Two former Murray residents moved into the home one week earlier. Both are female, one is in a wheelchair and the other uses a walker. Neither participate in a day program outside of the home.
It was then discovered Wednesday that an employee of the CILA [Community Integrated Living Arrangement] company was being charged in Marion County Court with felony abuse of a disabled person in his care, a charge that stemmed from an alleged incident while the worker was employed with another private care provider in Centralia.
On the handling of closures by the Quinn administration from Dave Kassel:
...The federal court complaint also contends that the Quinn administration is trying to close all of the remaining developmental centers in Illinois because it is facing a $13 billion budget deficit. At the same time, the administration made $1.6 billion in Medicaid cuts in June, which will further hamper the ability of the community system to provide the same services as the developmental centers.
According to one news account, even as the Murray Center was being readied for closure, corporate providers in Illinois were informed by the state in April that payments for residential and other services would be delayed by up to four months. The state, meanwhile, owes those providers hundreds of millions of dollars in unpaid bills.
The ARC of Illinois has been a chief proponent of facility closures in the state. In an editorial that appeared in many Illinois newspapers, Tony Palauski, the Executive Director, offered families platitudes ("The rebalancing of the developmental disability system is a life-enhancing process that offers promise, freedom and opportunity for people with disabilities.") and euphemisms such as using the term "rebalancing", when "Robbing Peter to pay Paul" would be a more apt description of the process. Without addressing any of the concerns of the family group from Murray, he brushes them off with "…Murray is going to close, and stall tactics will only hurt the residents."
Here is a response from Rita Winkeler from the Murray Parent's Association.
The judge in the Murray Center lawsuit issued a restraining order against the state to discontinue moving residents out of the facility. A hearing will be held on July 23, 2013. The federal complaint alleges violations of federal Americans with Disabilities Act and the Medicaid and Civil Rights laws.