Archive for Saturday, October 3, 2009

Futures of state hospitals debated

Commission may recommend closing facilities for developmental disabilities

October 3, 2009


What’s next

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.

— 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.

Progressive hospital

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.”

Budget concerns

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.


OutlawJHawk 8 years, 8 months ago

Of the 4,000 on the waiting list, a number seem to be wandering around Lawrence. Unless of course wearing socks on your hands or carrying baby dolls every where you go is normal.

rbwaa 8 years, 8 months ago

The absolute and critical issue is having the money to support individuals who need 24 hour care in the community. If the driving force is saving money for the state then the persons needing specialized medical care will be much worse off because community care is more expensive. My guess is that the majority of the individuals receiving care at KNI or Parsons are like Rusty who needs 24 hour medical care.

If we cannot provide adequate in-home care for 4000 people already on the waiting list, most of whom are probably ambulatory, how can we possibly provide the more intensive care needed for the 358 individuals receiving this care at KNI and Parsons?

We need only look at the homeless mentally ill persons, who are not receiving the support promised to them when the state mental hospitals were closed, to see the problems that would be created for developmentally disabled persons. If we do not commit adequate resources to them it would be inhumane to discharge developmentally disabled individuals from KNI and Parsons.

trinity 8 years, 8 months ago

amen rbwaa. community resources are stretched so thin or non-existent, now-what will it be like for folks that would be turned out to community based services? there is a pretty large number of folks who are cmi that encounter trouble with the law, get thrown in jail or put on probation...insufficient resources. and no, i don't have an answer. sure wish i did, though.

ralphralph 8 years, 8 months ago

I know very little about KNI, but I am quite familiar with Parsons. The residents are Parsons live in small groups in cottages, in a warm and loving environment. Most I am familiar with are so profoundly disabled that the folks walking around Lawrence with socks on their hands are like staid rocket scientists by comparison. These are people with a "mental age" equivalent to a one-year-old child, who have no ability to communicate, care for themselves or protect themselves; in fact, many of them have absolutely no concept of peril or personal danger whatsoever ... picture a 15-month-old child toddling toward a busy street or flight of stairs, with no idea that they are about to be hurt or killed if someone doesn't intervene. These people need 24-hour care, and they also need the security of a structured schedule and environment. Because they have little capacity for abstract thought, their world needs to be very concrete and very predictable. They cannot adapt to a community setting where the little variations of the day are, to them, chaotic and confusing shifts.
Bottom line: There are people in our society who CANNOT care for themselves, as opposed to those who WILL NOT care for themselves. The people are Parson fall into the former category. They need to be where they are, receiving the help and care that can only be effectively provided in that setting. If we owe an obligation to anyone it is to those who cannot care for themselves. Pushing these innocent souls out the door is not the answer. I have been very familiar with community workshops for the developmentally disabled for decades, and they are a wonderful fit for those to whom the programs are suited, but the residents are Parsons are not those persons. They are, rather, the profoundly disabled who both require and deserve the care the receive, right where they are. Closing these facilities would be a monumental and monstrous mistake, and would amount to a horrendous act of collective cruelty.

pace 8 years, 8 months ago

they are out of their mind. Close the hospitals, do in home services, then don't fund the inhome services, then feed them sandwiches under the bridge.

Me2 8 years, 8 months ago

All I can say is I work at Parsons. The people you are talking about are people I care deeply about. They will not receive the same loving care from strangers as the care that I give them. Please don't take them from me. Their quailty of life should not be put up for grabs because the State wants to save a few bucks.

KS_FarmGal 8 years, 8 months ago

As an advocate for an individual who rotated in and out of the so-called health care 'services' sector for over 7 years before finally receiving public assistance, I can tell you that there is dang little our society presently does for an ambulatory walking wounded mentally and physically disabled person. Shelters are overcrowded and HIGHLY inappropriate for persons with mental disability. Full time caregiving outside an institutional setting is usually a disaster, for the family friends AND for the individual in need of assitance. YES there are people who belong in an outside setting, but before you condemn those best served in institutions, FIRST go be that persons caretaker for say two months, then and only then can you determine if THAT individual is best served 'inside' or out. And that 40 million? Its under 95 buck an hour per individual - JUST TRY to get full time ethical compentent help, medical care, and appropriate housing for persons in need of specialized care --at that price-- 'outside'... Simply impossible. And my buddy? He is now living fairly independantly, at minimal cost to society - beats the heck out of repeat uninsured hospitalizations at $3,000 to $75,000 per rotation.

KS_FarmGal 8 years, 8 months ago

Oh and I forgot to mention - when he wasn't in a homeless shelter (which made him crazier) or in the hospital, he was either under one of the bridges, at my house, or stying on someones couch which host (like me) tolerated a freeloader with mental and emotional problems for as long as they could before putting this fellow back on the streets. Its a blazing wonder he didn't die. I always expected a call to say they needed someone to ID the body... assuming he DID have my number on him.

Lets NOT make more folks like that, eh? At least my friend had part-time use of his mental faculties, and the ability to befriend folks who'd take him in now and then. Think of all YOUR high school buddies, former friends, some have become one of those in need! Go looking I bet you find one or two...

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