The Facilities Closure and Realignment Commission meets again Oct. 26. Its recommendations are due to Gov. Mark Parkinson and the Legislature by Dec. 1. Under the proposal, the commission’s recommendations will take effect July 1, 2010, unless overturned by a majority vote in the House and Senate.
Topeka A commission that will make recommendations about the fate of two state hospitals has brought into focus the role of government, the pressures on the budget and changes in how society responds to people with developmental disabilities.
After hearing two days of sometimes emotional testimony, the Facilities Closure and Realignment Commission decided to wait a few more weeks before making a recommendation on whether to close the Kansas Neurological Institute in Topeka and Parsons State Hospital and Training Center.
“We are at a historic crossroads for services to Kansans with developmental disabilities,” said Rocky Nichols, executive director for the Disability Rights Center of Kansas.
There are two sides to this debate, with a lot of shades of gray in between.
On one side are many advocates for the thousands of Kansans with developmental disabilities, and people who have disabilities. To them, KNI and Parsons represent the institutionalization of people, all in an attempt to keep them out of sight and out of mind. They see these facilities as providing a low quality of life, and failing to help people with disabilities to realize their potential and participate in the world outside.
They want people with developmental disabilities to live in smaller group homes or on their own where they would have more daily activities in the community and more individualized care.
Kathy Lobb, of Lawrence, who works for the Self-Advocate Coalition of Kansas, spent some of her life in an institutional school in Nebraska before she came to Lawrence. She then received services from Cottonwood and later moved into a group home and then got her own place.
“I am happy with my life,” she said. “My disability doesn’t bring me down, and I have learned over the years how to live my life with a disability.”
On the other side are family members of people who live at or have stayed at these facilities. They say that without the care received at the facility, their loved one wouldn’t be alive. Some have profound mental and physical disabilities that require around-the-clock care.
Linda Waltman LeMieux of Weatherby Lake, Mo., says her brother Rusty, who is 53, has lived at KNI since he was 7 years old. Rusty has severe neurological disorders, cannot speak and requires many medications. He is no longer ambulatory and is fed through a tube because he cannot swallow.
“I truly believe that without the love and expert care that Rusty receives from the KNI staff on a continual basis that Rusty would no longer be alive,” she said.
And even some advocates say that under most circumstances they would support closing institutions, they can’t support this proposal.
Shari Coatney is chief executive officer of Southeast Kansas Independent Living Resource Center, and has two children with developmental disabilities.
The idea that institutions strip people of their identities and rights is not the case at Parsons State Hospital, she said.
“Human and civil rights are respected and protected at the hospital. Individualism is a huge priority with administration and staff,” she said.
They also argue that these hospitals have evolved.
“I am philosophically anchored in the belief that institutions should be done away with and closed,” said Greg Jones, who has a disability, provides services to people with disabilities and is a guardian to people with disabilities.
“However, knowing what I know and have experienced with Parsons State Hospital and Training Center, I must question if in fact it is an institution.”
And there is an underlying motive of money.
Keeping KNI and Parsons costs $40 million per year for 358 people. Meanwhile, there are about 4,000 Kansans on waiting lists for in-home services.
Advocates say that closure of the facilities should be contingent on all that money going back into community services for disabled people. But some legislators have noted that current lawmakers can’t force future Legislatures to make certain appropriations.
Even so, Lobb, who has made the journey from an institution to independent living, said the effort is worth it.
“I know it is a very scary transition for these people and their families, but it is a good transition,” she said.