Archive for Sunday, April 17, 2011

Budget discussions threaten future of Kansas Neurological Institute

A KNI resident's room. Residents are able to personally furnish their rooms through money they earn from working or funds they receive from Social Security or other sources.

A KNI resident's room. Residents are able to personally furnish their rooms through money they earn from working or funds they receive from Social Security or other sources.

April 17, 2011


— Frances Sapp of Reading explains plainly what she believes would happen to her 43-year-old son Sammy if the Kansas Neurological Institute were closed.

“I think he would die or be hospitalized shortly after being moved,” Sapp said.

Sapp was one of many parents and guardians of KNI residents who pushed back hard against a budget proposal by Gov. Sam Brownback to close within a two-year period the state hospital that serves people with severe mental and physical issues.

Brownback said his proposal would save money in the face of a looming $500 million budget shortfall. He said the residents of KNI could receive the help they needed in group homes in communities.

Both the House and Senate have rejected Brownback’s plan for now. Still, legislators have yet to approve a budget for the next fiscal year. They return later this month to put a plan together.

And folks like Sapp are keeping a vigilant eye on what the Legislature decides.

Her son was born with Down syndrome and muscular dystrophy. He lived at home until after graduating high school and then his health worsened, she said. He cannot speak and breathes through a tracheostomy. He needs an emergency call light to summon for help because he could be dead within five minutes if he gets a mucus plug in his airway, she said.

In short, he requires round-the-clock attention, care and special treatments.

“The community homes don’t have that,” Sapp said.


Of the 156 residents at KNI, 90 percent have profound disabilities and the remaining have severe disabilities. Eighty-three percent cannot speak; 68 percent are unable to walk; 76 percent have seizures; and 85 percent require help to use the toilet and one-third are fed via tubes.

Ninety-four percent have lived at KNI for more than 10 years, and nearly half are older than 50 and four out of five are older than 40.

Since its start in 1960, KNI has changed with the times, moving away from an institutional setting to one where the resident is at the center and assisted by a team of people.

“It’s a place where people feel very deeply about working here,” said KNI Superintendent Barney Hubert.

In buildings spread over the 180-acre campus are 22 homes. Six to eight people live in each one, and they are served by eight to 14 support professionals led by a team coach.

“The staff takes great pride in the work that they do here,” said team coach Christine Brady.

Her team even puts together scrap books for each of the residents. First-year employees undergo more than 300 hours of training, and each resident has a person who serves as his or her advocate.

KNI also has a medical center with nurses on site round the clock, a dentist, a physician on call, a pharmacy, X-Ray technician and many other professional services.

Many people with developmental disabilities who are in group homes come to KNI for medical treatment.

They also come to KNI to get assistive technology made in the “MacGyver” room. KNI also has a wheelchair clinic where chairs are adapted to the individual needs of each person.

In one building is the Hidden Treasures Mall, where 85 percent of the residents work in a number of retail shops open for public business.

Repeated attempts to close

KNI has been the focus of attempts in the past to shut it down.

Groups that advocate on behalf of those with disabilities have sought the closure saying it would be better for the residents, and the state could save money that could be spent on Kansans with disabilities who are on waiting lists for home-based services. Officials have also said the KNI property could be sold with money going toward those with disabilities.

KNI, which has 500 employees, costs approximately $29 million per year to operate with nearly $11 million coming from state general tax funds.

But the advocates usually come up against the parents and guardians of the residents who say the needed support in community-based groups homes is just not there.

In 2009, a state commission recommended closing it within three years and transferring residents to either more community- or home-based settings or Parsons State Hospital.

But then-Gov. Mark Parkinson rejected the plan.

“I agree that serving individuals in the community can lead to a better quality of life. In spite of that, I also have concluded that it is currently not feasible to close KNI and consolidate all residents at Parsons,” Parkinson said.

“It will take time to reduce the populations at both facilities to a level that makes consolidation possible,” he said.

Already part of community

Sapp says what most people don’t understand is that KNI residents have frequent opportunities to interact in the community through shopping trips and social and recreational events.

“I don’t think people really realize what KNI is,” she said. “They think it is a dark place behind walls, but there are seven in my son’s group, and they (the group) have their own kitchen, living room area.

“Each has their own home. When he is well enough, they will go to Walmart, a movie, the library, or they’ll go fishing with us. They’re not stuck behind dark walls. They’re already out in the community,” she said.


just_another_bozo_on_this_bus 6 years, 9 months ago

I have confidence that Sam and the Republicans can come up with a final solution. After all, the rich say we're broke, so the disabled and their families must pay.

this_guy 6 years, 9 months ago

And the government waste money trying one baseball player 75 million dollars that no one will ever see again good job huh

KEITHMILES05 6 years, 9 months ago

Closing KNI would be a horrible, horrible mistake. As has been said the vast mojority of residents need 24/7 care and their needs are such everybody needs to be highly trained and skilled. The medical needs alone are mind boggling.

Cynthia Schott 6 years, 9 months ago

Well then, maybe with the next election, people will remember those issues.

parco814 6 years, 9 months ago

Not likely, not among most Kansans, based on the results of last year. Hating Obama and scapegoating illegal immigrants gets you heard, funded, and elected here. Recognizing people with severe disabilities as human beings with rights gets you ignored.

Don Whiteley 6 years, 9 months ago

Yep, and we'll elect a Democrat who'll quadruple our debt in the next 4 years. Voting for a Republican means we close great institutions like KNI while lowering taxes on the wealthy. Electing a Democrat means they are going to pass every piece of social legislation that crosses their desk without having the smallest clue how they're going to pay for it. Isn't there a third choice?

justtired 6 years, 9 months ago

I think that those wanting to close KNI should adopt a resident for a week and have to provide their 24/7 care. Instead of walking the halls in an expensive suit, walk a mile in a staff members shoes!!!!!!!!!!!

Brock Masters 6 years, 9 months ago

If my math is correct it costs almost $186,000 per resident. That is a lot of money per resident.

I think we're at a crossroads in this state and this country where we need to decide what is the role of government. Is it, regardless of cost, to care for the weak, sick and down trodden or is there a limit to the amount of financial aid we're willing to provide and to whom we'll provide it?

Personally, I am torn. On one hand I question the cost to provide the services to these individuals, but on the other hand I question the type of society in which we'll live if we do not care for the most vulnerable?

There is going to continue to be conflict and friction until we decide which road we want to take as a state and country.

Brock Masters 6 years, 9 months ago

I divided 29 million (the cost to run the place according to the article) by the number of residents 156, again which I got from the article.

I used a calculator and checked it twice so it has a 50-50 chance of being right :)

May Soo 6 years, 9 months ago

I still wonder what exactly the KNI residents need that makes their care four times that amount.

The difference between KNI and a nursing home is the cost of staffs. The pay, the qualifications of the staffs. Unless the nursing homes are willing to pay the Nurse's Aides a minimum of $15/hour, no one is going to want to do the job.

Ken Lassman 6 years, 9 months ago


It's my understanding that the folks at Parsons have far fewer medical issues and almost all of them are ambulatory, meaning that they don't need a wheelchair. In fact, it's my understanding that the homes at Parsons are not even wheelchair accessible for the most part, so it would cost a chunk of change to change that, along with greatly expanding their medical support infrastructure.

I've known a number of folks who have worked at KNI over the years, and while it's to their credit that this has not come up in the discussion, a majority of staff are African American and KNI has always been very aggressive in their educational opportunities, requiring staff to become CNAs and CMAs and supporting folks who are interested in higher education and votech training to help subsidize those aspirations. This is an equal opportunity work place, but if it were closed, it would be a huge blow to shut down such a place that has provided job training for such a large number of folks over the years.There are bunches of folks who are throughout the state system who got their initial start at KNI and have moved on to be productive state employees elsewhere. Shutting down KNI won't just hurt the folks who live there--it'll shut down a major opportunity for folks in the Topeka area to get trained in a wide variety of productive jobs who might not otherwise have that opportunity.

I think the state legislature has the right idea: do an audit of the services received at KNI and compare apples to apples what those services would cost in the community. Then and only then can it be seen if the state can cut spending enough to keep KNI going or whether the services can be reliably provided elsewhere. Without that careful accounting, we're left without a real means to make a good decision.

Ken Lassman 6 years, 9 months ago

I agree that this is neither a race issue nor a rural vs urban issue nor should it become one. I think that a good case can be made that closing either Parsons or KNI will be difficult at best for that community, and while both communities could theoretically absorb the folks into smaller group home settings primarily within those communities, there would be little overall cost savings, and if those savings were actually accrued, it would be primarily through lower wages and less training, resulting in higher turnover rates, less qualified help, and very likely poorer quality care. How can you expect any different if you don't pay as well, have less training, and higher turnover?

Personally, I like the concept that Parkinson put out there: continue to use a criteria-based downsizing process for both KNI and Parsons, placing folks into community settings based on the supports that are in place, not on a per-month-placement schedule. After 4 years, see where the numbers are and consider consolidating one or the other based on whether it makes sense then.

I know there's been some talk about privatizing too, which could be interesting, or, after the audit, challenging both institutions to cut costs significantly to see what they could do.

Ken Lassman 6 years, 9 months ago

I think the philosophy of both places is to provide services to folks from Kansas and there might be difficulties tapping into funding streams from other states. Also, both places I believe strive to have as much family involvement as possible, which would make it more difficult to do if they came from out of state. But I like your "thinking outside the box" strategy--we certainly need to do that!

One thing that I've thought about is that folks who have been supported in the community over the years get older as do their parents, and typically folks with developmental disabilities age at a faster rate than normal, so what if both KNI and Parsons could cater more to providing supports for folks who are aging and have DD? Nursing homes don't really have the specialized training that it takes to adequately support folks who have DD and live in the community, but both Parsons and KNI certainly do.

Just a thought....

Ken Lassman 6 years, 9 months ago

I'd agree with the need for better PR and information. Both KNI and Parsons have progressed way beyond the stereotypic institution; they are more like groups of group homes any more. For instance, at KNI, they get their food at the local groceries, cook it in their kitchens, do their laundry in their own washers and driers, hold down jobs either in the community or in supported employment on campus, visit family in the community and even go on vacation if they save up enough money from their jobs or get help from the family.

In many ways, it's easier to keep track of how things are done in a centralized setting like KNI or Parsons, since everyone knows where you are and you can drop in unannounced. Neglect and abuse occurs when not enough eyes are watching, and from what I can tell there are plenty of eyes watching over everything at both sites.

Not sure what to say about the need for regional focus that doesn't stop at the state border--of course you're right, but at least where each state has its own rules for Medicaid, it's difficult to cross those lines. And money is the name of the game, whether we like it or not

Ken Lassman 6 years, 9 months ago

I don't think they can cook or clean for themselves necessarily; it's just that the support staff partner with them and they do all of those things instead of going to some institutionalized cafeteria or shipping clothes off to a state run laundry, meaning that they are more active participants in food selection, in smelling the foods that they can help cook, etc. It's not only better food, it makes for a more meaningful life if you can choose your own menus and help the local grocer by buying your food from them instead of off of some contracted food warehouse supplier. It's very much like community group homes are run, with the addition of special training and supports to address the increased physical needs.

ivalueamerica 6 years, 9 months ago

You have got to be joking?

Give the severely disabled a time limit to become more independent? good God, do you hear yourself?

We force the severely disabled to get jobs? If the government is not there for the most vulnerable and helpless, then what?

You also clearly know nothing about extended care on this level and your figure is FAR less than keeping them in a hospital. Putting them in a nursing home that is equipped more for the elderly than the disabled leads to neglect and poor care.

Families will go broke in a short period of time trying to care for them at home.

What other option do you have? Kill them?

ivalueamerica 6 years, 9 months ago

you are making it up as you go along, I worked for the Texas Department on Aging with their Ombudsman program where people worked as citizen advocates for those in nursing homes.

I never said that they can not provide the medical, but their care is geratric and end of life oriented, and not developmental.

And first of all, that is not ideal for seniors, but it is even worth for a 25 year old severely disabled individual.

please come back when you are less lost and join the conversation, a little education would do you a world of good.

ivalueamerica 6 years, 9 months ago

You win the award for most clueless poster.

You fail.

overthemoon 6 years, 9 months ago

It seems that moving residents to group homes, which I assume would be supported by the state, doesn't really cut costs. Its going to cost money either way, and I don't see how spending and care could be that much more efficient in multiple smaller facilities that will duplicate services and facility costs.

I have a friend with a severely disabled child that requires 24/7 care. She says the state provides in home care at $8-9.00 per hour. That amount does not keep a qualified, conscientious care provider interested in the work. She pays another $8-9.00 per hour out of pocket to assure consistent care for her child. And she just found out that the number of allowed hours have been cut dramatically. How on earth do parents with a child like this manage when the cost of care exceeds their income?? What do the slash and cut proponents have to say to these families? "So be it"??

Bob_Keeshan 6 years, 9 months ago

Opposing the closure to KNI is easy, since Brownback wants to close it merely to pocket the dollars and use them to justify tax cuts not for the citizens of Kansas but for our "corporate" citizens.

It is an insane way to manage an enterprise.

Sean Livingstone 6 years, 9 months ago

Why do we need healthcare? Honestly, the most cost effective solution when someone caught a serious illness is to die immediately so that he/she won't have to pay or our insurance pays for them.

geekin_topekan 6 years, 9 months ago

So the fiscally responsible thing to do is to die off when you get sick?

I do hope that your Medicaid-aided parents-grandparents feel the same way. Hopefully you will assist them on their efforts to play their part in America's recovery.

(I forecast a fairy tale about medical independence coming on in 3,2,1)

tomatogrower 6 years, 9 months ago

And I wonder how many of the relatives of these poor people voted for Brownback? Kansas always seems to vote against their own interests. You get what you vote for, so if these people get their reality changed so much they die, I guess all the fiscal conservatives will be happy, since they will be saving money. I have one conservative relative (this isn't condemning them all) who can't stand to see someone who is developmentally disabled. He has even made the comment that he thinks they should never be brought out in public for others to see. He even is just "grossed out" (his words) by a neighbor who lost his arm at work. Apparently he isn't "perfect" enough to be in this man's company. I'm not saying all conservatives are like this, but in my own experience, more conservatives prefer healthy "normal" people who look like them, over those who aren't. I think my conservative relative would rather they just die or hide away in an institution, as long as he doesn't have to pay for said institution.

parco814 6 years, 9 months ago

Interesting--the usual crowd of government-hating zealots and ignoramuses, who fancy themselves rugged individualists and American revolutionary minutemen, are nowhere to be found on this thread. I don't have to name names. Most folks know who I'm talking about. This problem with funding the KNI exposes, in a very raw and painful way, the limits of their ideology and the absurdity of their pathetic belief that the free market means freedom for everyone and that selfishness equals liberty.

The answer these laissez-faire utopians would give to this emergency? Well, the families of the KNI patients should find a charity to take care of their loved ones, and if there's a shortfall, well, then the family members should just work harder and earn more money. Not our problem! And if you say it is, you've just proven you're an Obama-loving, America-hating socialist.

this_guy 6 years, 9 months ago

Cute....real cute... the main problem is that people are reproducing to fast and to much and when the numbers or more than jobs HOW CAN PEOPLE find jobs...? but are right! it is easier to ask for a handout then to work hard for living .... "The American Dream" is to blame to step over people when their down is apart of this its to blame

Mike Ford 6 years, 9 months ago

my father was a chaplain at Topeka State Hospital before it was closed in the early 1990's. Once upon a time, Topeka had Menningers, Topeka State Hospital and an industry that provided care and employment for patients and topekans. The "I got mine, screw you" crowd with it's Reagan era hangover sought to close the safety nets just as it's trying to do now. I used to deliver food in Topeka and see many of the schizophrenic patients walking talking to themselves that my father used to speak to at Topeka State as I drove food across Topeka in the mid 1990's. FYI, we know who you are, we know what you're doing and you may be able to fool the bible grippers and the xenophobic ruralicans, but you don't fool us. We will fight you in any form whether it's tpers or dumblicans. You don't even have mercy for those who can't help themselves. Shame on you and your "Family Values?".

maybeso 6 years, 9 months ago

"a budget proposal by Gov. Sam Brownback to close within a two-year period the state hospital that serves people with severe mental and physical issues." So this is what Brownback means by "a culture of life?" I agree with tomatogrower, Kansas does seem to elect leaders who do not support the values of Kansans.

overthemoon 6 years, 9 months ago

And those 500 employees will find work where?

Paul R Getto 6 years, 9 months ago

If the residents at KNI had picked the right parents, inherited good genetics and a few hundred million dollars (like a couple of well-known Kansas brothers) they would be in better shape. Their only hope now is to give Muscular Sam lots of money for his election coffers and, perhaps, they will get a better deal next time around.

jafs 6 years, 9 months ago

My wife has worked with the DD population for over 20-30 years, and she is quite clear that the folks in KNI can not be adequately served in the community settings available now.

In addition, she says it would cost more to do so than it costs at a place like KNI.

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