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Clustered group homes nixed by feds; state to move ahead with ISL plan

Wednesday, August 18, 2010

Flanked by audience members and Missouri Senator David Pearce in the background. Missouri Department of Mental Health Director Keith Schafer explains the details of the current plan to house some of the Nevada Habilitation Center's clients in Individual Supported Living facilities, many of which the state hopes can be located in Nevada for a variety of reasons, including continuity for clients and staff members. The director, along with Pearce and Missouri State Representative Barney Fisher presented the new information to a crowd of about 75 people at a town hall meeting at the Franklin P. Norman City/County Community Center in Nevada on Tuesday.
Group homes will not be built in a cluster on the grounds of the Nevada Habilitation Center to house some of its clients, but Individual Supported Living homes scattered throughout the community are still a viable option in Nevada.

In a town hall meeting about the fate of the Hab Center and its clients held Tuesday evening at the Franklin P. Norman City/County Community Center, about 75 people gathered to hear this news, the most recent development in the saga of the Hab Center's evolution in the wake of state budget cuts. Some attending were from groups that work with and advocate for developmentally disabled persons; some were family or guardians of the Hab Center's clients, some were public officials, still others were property owners, business persons and developers interested in what lies in the future in terms of group homes.

Missouri State Representative Barney Fisher compared the events of the past several months to "herding snakes. When you think you've got it just about lined out, there's twists and turns."

In the spring, the budget passed by the House and Senate spelled the end of the Nevada Habilitation Center; but then a plan was conceived to construct group homes on the grounds of the facility, moving some of the residents there and maintaining facilities and 255 of the center's approximately 300 jobs, and, hopefully provide some of the continuity of care local parents and guardians passionately advocated. Fisher and Senator David Pearce worked hard on the passage of a "conveyance bill" that would enable the construction of the homes. The legislature passed the bill on the last day of the session, and it would be nearly two months before it was signed by the governor, and hope for this plan remained. But not everyone was thrilled at the prospect. While local legislators were seeking ways to make this plan a reality, advocacy groups, in particular Missouri Protection and Advocacy, an organization that fights for the civil rights of developmentally disabled persons, adamantly opposed the plan. The group threatened legal action, and took the position that group homes in such a clustered setting was still institutional living. The group strongly believes that disabled persons should live in the least restrictive environment; in the community, not clustered together and cloistered from the rest of the community. Representatives illustrated the point to the Daily Mail in July by asking, "how many non-disabled people would live in these homes?" indicating that clustering the homes changed only the shape of the institutional living and would not make them any more a part of the community than they are living in the institution.

All the while, though, the local plan for the clustered group homes hinged on approval from federal funding sources, and in the end that proved to be the undoing of that plan.

Keith Schafer, director of the Missouri Department of Mental Health, told the crowd that about a week or so ago, he received word that "the federal agencies are not in support of building congregate homes on a campus like this." With that, the clustered group homes notion disappeared.

Instead, ISLs are proposed, "sooner than later," Schafer said.

Schafer said there are two types of ISLs -- state operated ones and privately operated ones. The ISLs are three-bedroom homes housing developmentally disabled persons, where support services are provided. A number of area builders and real estate professionals have expressed interest. Already, there are 19 former Hab Center residents living in Nevada in ISLs. Of those now housed at the Hab Center, 22 families have indicated an interest in this, and 18 of those have said they'd like to have a state run facility, in which the builder leases the home to the families and the state provides the treatments and support services needed. Forty-three of the residents and their families or guardians have not expressed their desired living arrangement.

"We are not closing the program. There will still be direct care staff, a day center," and other services, and Schafer said that if past experiences are any indication, the vast majority of clients' families will choose state-run ISLs.

Schafer said the community can expect ISLs to open somewhere in the next year or so. If all of the homes end up coming to Nevada, the city would have what Schafer called "a significant number" of ISLs; about 12 now and about a dozen more in the future. "If Nevada decides it's too many, we will look for receptive communities in a 30-mile radius. We want to preserve that state staff positions as close to Nevada as possible," phasing them in over the next three years.

"These people will be buying groceries, contributing to the economy," he noted.

The homes could be new construction or rehabbed existing homes, and should the residents move or die, other residents on a waiting list desiring an ISL accommodation in Nevada would have the opportunity to move in.

Responding to a question about funding, Schafer explained that funding is in place for this option for all those currently served by the Hab Center, and that the cost of the ISLs is $72 less per day than housing them in the Hab Center.

Responding to another concern about what recourse is available to property owners if the property is damaged by residents, Schafer said that's best addressed at the time a contract is entered into, addressing who pays for what and when. He was quick to note, though, that "the vast majority of people who live in ISLs live in a very good setting and are delighted to be part of the community; and they are great citizens," but there will always be a few who are not.

Crisis stabilization was another concern; but Schafer said that's an issue best worked out at the local level.

Jennifer Gundy, executive director at On My Own, Inc., took note of the elephant in the room when she addressed an issue on the minds of many. "I grew up in Nevada," she said, and is aware there are concerns about Hab Center clients being more integrated into the community, "But they're already in the community. They're already going to Wal-Mart, going places in the community. Nothing is going to change. This should be something we try to embrace, to be proud we are allowing people to live more independently."

Fisher said the ISL plan would still keep jobs in Nevada if the homes are built here, and "They keep giving us lemons .... we're trying to make lemonade."

At the close of the meeting, Susan Pritchard-Green, director of the Missouri Planning council for Developmental Disability, said the group is anxious to help with the process; and Shawn DeLoyola, director of Missouri Protection and Advocacy was ecstatic.

"I think this is fantastic news. I think it plays into the many ways people can embrace people with disabilities. It's a win-win," by enabling disabled persons greater immersion in the community and preserving area jobs at the same time. "I don't think you'll find any opposition in the disability advocacy community."

A day program center, administrative offices and other support services will still be needed, but will come "further down the road," Schafer said. Builders and real estate professionals interested in finding out more about building ISLs in the community are urged to contact Chris Baker, superintendent of the Nevada Hab Center as soon as possible.

The fate of the existing Hab Center buildings is undecided, but Schafer suggested that the city might be the best entity to deal with their disposition.

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I guess I'm not very bright. The advocacy person was "ecstatic" about the "fantastic news". Meanwhile, back in the real world, we are still kicking these people out with no place to go. This has to be very hard on the families of the "clients". it would seem that this is more an argument about money and who is going to be receiving state and federal funds than it is about taking care of these people. I'm fascinated by the way the State official referred all the problems and negative issues to the "local level". In essence, he said, "We made this mess, now you clean it up." What was that name again - Pontius Pilate?

-- Posted by Samclemens on Wed, Aug 18, 2010, at 9:11 AM

And so the story changes yet again. Cannot believe a word they say. The last thing anyone thinks of is the poor folks who reside in the Hab Center....It is all about the money folks.Such a sad indication of our society . But wait...we have money to send to foreign countries & aide relief & wars. Whatever happened to taking care of our own? The most vulnerable members of our society.

-- Posted by katy318 on Wed, Aug 18, 2010, at 9:38 AM

Hum...no place to go??? I don't believe this is true. ISL's will be established around the community and the doors will not be closing for 3 years so that the residents can be transitioned smoothly and safely. Employees will be maintained because the majority of the homes will be state run and the programming will be maintained meaning there will still be day programs and crisis intervention when needed. It really was a fascinating meeting last night with a lot of information shared. It was great to hear it first hand. It will be interesting to see how things progress from here. Like Barny said... Let's make lemonade!

-- Posted by NevComC on Wed, Aug 18, 2010, at 1:51 PM

I can see how this could appear to be a political dance that is all about money, and it is very easy to see why any of us living through this economic disaster would have a pre-disposition to doubting those in politically powerful positions. However, as a strong advocate for the closing of institutions, I assure you that those of us advocating for this change are not doing so for a financial reason. People of all abilities deserve the right to live, work and play in their community. Those who reside in the hab centers are no different than anyone else. They have dreams and desires. The only difference right now is that you or I can pursue our interests and enjoy our freedom. Those in the hab centers have no control in their lives. Imagine living a life where you cannot go to the refrigerator and get a glass of milk without having to ask permission and waiting for someone to check your file to see if you can have it. What if you could not even go to the sink to get a cup of water because you are not allowed in the kitchen? What if your every move from when you get up or go to bed to what you wear to how many minutes you are allowed to play a video game or shoot some hoops? This is how I expect the lives of hardened criminals who are in prison must live, and I am ok with that. What I am not ok with is that people who have not committed a crime are locked away like common criminals. We have laws in place that protect our citizens from unlawful imprisonment, but sadly, these laws do not apply to people with disabilities. Everyone deserves the opportunity to live and thrive in a real home.

The ISLs that were referred to in the article are a very good option for people who need support but still offer the opportunity for people to live independently. People are not losing a home. They are gaining a home. I am sympathetic toward those who have not had the opportunity to live a noninstitutional life because I am sure this will be a huge change in their lives, but I truly believe that when a person finally experiences freedom, that person will find hope.

This plan offers the opportunity for people to be included in their community. It offers a time frame for transition and provides for the opportunity for people to maintain their employment. I believe that this has the potential to be a win/win for everyone involved. People of all abilities should have the opportunities to live and love, hope and dream, thrive and struggle, build friendships and be alone when they want to. People should simply be able to experience the same joys and downfalls afforded to every other citizen of the United States.

-- Posted by cromer on Wed, Aug 18, 2010, at 4:10 PM

There is a restriction in Nevada on how close together group homes can be to each other. I'm sure someone knows exactly, I don't. With all the group homes already here, I would think it would be hard to fit in 25 more.

-- Posted by TerryB on Wed, Aug 18, 2010, at 4:40 PM

Will the last person to leave please turn out the lights?

-- Posted by thestirrer on Wed, Aug 18, 2010, at 8:51 PM

Another option for families is that they form a co-op. The co-op would become an entity/company that qualifies to provide the ISL services. This way families have control of the quality of the services provided to their family members. Family members would be on the 'board' of the company and would make decisions regarding who is hired to provide the ISL services. If staff hired are not performing as families want, the families have control in terminating the families. The families have 'oversight' of the care being provided. The families also have 'oversight' of the cost of the services, and the effectiveness of the services but they do not have to do the day to day supervision of the services. Perhaps the Planning Council could assist families interested in exploring the possibility of forming a co-op. Or perhaps the Missouri Health Foundation could assist in start-up funds. Models exist in other states and this model generally results in the highest quality of services being provided to individuals.

By the way, ISLs should not be group homes. No more than 3 people should be living in an ISL. ISL is a support service provided to people living in their own home. Own home means the apartment, house, condo, townhouse, duplex, etc. is owned by the individual or individuals or is leased to the individuals and is not owned by the ISL provider. The concept is the individual should not have to move based on wanting to change ISL provider. That is, if an ISL provider is not working out for the person, a new ISL provider can be chosen by the person to come to their home and provide the support versus the person having to move to another location to get services from another ISL provider.

-- Posted by gk5050 on Thu, Aug 19, 2010, at 9:01 AM

Oh Titanicsdoom...you crack me up with your conspiracy theories. Isn't it possible that these advocacy groups are actually looking out for the rights and safety of these people. Why does it always have to be one against the other. Lets just all come together, understand that this is going to happen and make sure the transition happens safely for our new community members.

-- Posted by NevComC on Thu, Aug 19, 2010, at 9:34 AM

To state that the persons living in the Hab center are "no different than anyone else" shows just how far from reality some of us have gone. I have a close relative in a care facility. They are there because they cannot function without help. To state that these individuals can function in society just like anyone else is a very misleading thing. The State has opted to use tax dollars to help care for these individuals in the past. They are now choosing to stop doing that. They will turn it over to private individuals and corporations that are profit motivated. The quality of care will diminish. Anyone who does not believe that is not living in the real world. Yes, it would be nice if they could live in a regular home and carry on a normal life like the rest of us. The reality is that can never happen. Don't come in and try to tell the families of these individuals how to run their lives, when you have no idea what is involved.

-- Posted by Samclemens on Thu, Aug 19, 2010, at 9:50 AM

By the way, I think Barney has done an admirable job in trying to do what's best for the residents, and for our local community. He was not successful this time, but he has always had the lives of our residents as a top priority.

-- Posted by Samclemens on Thu, Aug 19, 2010, at 9:52 AM

Titanicsdoom...I truly do not mean to offend. This is obviously a very sore subject and do not think this line of conversation has any value anymore since it has turned so negative. My final comment on the subject...I really just want to make sure the residents are transitioned safely and their happiness continued. As long as this occurs, I feel this is the best move. That's why I think it is so important to come together and make sure this happens. That's all I'm saying.

-- Posted by NevComC on Thu, Aug 19, 2010, at 10:40 AM

We had one if their former clients in our neighborhood for a while. He was ok when on his meds. According to his caregiver,she couldn't force him to take his meds. When he was off them, he would run around the neighborhood nude. The police said because he was mentally challenged all they could do was make him put on clothes.

-- Posted by TerryB on Thu, Aug 19, 2010, at 12:03 PM

Ok so we now go from outdated buildings that are payed for at taxpayers expense over the years but rent is cheap and we bus people around campus many at a time cheaply and off grounds occasionally.Then we go to ISL/Waver paying higher rents add more cars and fuel usage because we want normalacy for living standards,plus bring them back to campuses to work and educate costing way more than just living the campus life.We have a choice with grandma and grampa going to the nursing home don`t we?If not liked don`t put them there.So to this affect is like leaving granma and grandpa in there expensive rented home but paying others to take care of them.So which is cheaper?

-- Posted by upnorth on Thu, Aug 19, 2010, at 9:24 PM

At this point, I feel it is important to mention that, although I am a member of an organization that believes in De-institutionalization, I am posting as an individual, and I am speaking about how I feel... not how I think this will impact the state's budget. Since I have not requested approval to use my thoughts and feelings as a representation of the organization, I will not mention the name of the advocacy organization. I will tell you that we are not comprised of lawyers or state officials. We are people who experience a wide variety of developmental disabilities. What we believe has more to do with how we see disability and independence than fiscal impact.

To TitanicDoom, I think what I was trying to express became lost in the miscommunication that has traditionally occurred between both sides of this issue. I do understand that the restrictions imposed are not done so by the direct care staff, but that doesn't make those kind of restrictions right. In many cases, the doctor spends five minutes a month with the person and only looks at all of the negatives. So, it is easy to see that they are truly not seeing the person. So, who is the "medical team" really representing...the person or the facility. I believe that every person, regardless of disability and severity, should have some input into the "care" they receive. I believe in the concept of right to risk.

You asked if I personally know anyone who lives in the hab center, and I have not yet had the pleasure of meeting any of the people who reside there. However, I have been in facilities and witnessed even the bathroom being locked. The residents had to ask permission to use the bathroom. You spoke of crisis situations, but if there are not restrictions like this in place and transition is done in an effective manner that ensures a focus on the person's strengths and desires, then why would there be a reason for a crisis. Behavior is a communication and crisis occurs when people fail to hear what is being communicated.

You may think that I do not understand the level of support that people may need, but honestly, who among us does not need support. If someone without a label gets mad and punches out a window, and someone steps in to calm that person, it is considered a moment of poor judgement. If a person with a label does the same thing, it is proof for a "care plan" for the rest of their life. If a staff is good at what they do , either in the community or in the institution, things should not escalate to the window.

To SamClemins, when you said that I am away from reality for saying that those who reside in the centers are the same as everyone else, it struck me as an indication of perception. When I say good morning to my co-workers without disabilities, I do not think, "Man, I'm so glad they LET me work here." No, we are equals and each of us has our strengths and weaknesses. It is a natural fact of life. Maybe the people that you know experience some major challenges, but do they not also have some good things to offer? Each of us has strengths and weaknesses, and we would all be in jeopardy if the focus was solely on the weaknesses. We have to utilize our strengths to maximize the quality of our life. The same can be said for successful implementation of transition from institutional life to the community.

It is obvious that you all care about all of those involved, and it is that caring that will provide a level of input that will enhance the lives of people involved.

-- Posted by cromer on Fri, Aug 20, 2010, at 2:35 PM

Having these handicapped individuals living in the community will be no more "odd" than some of the "normal" folks running the streets in Nevada. Some would actually be more normal.

-- Posted by Custom 1911 on Fri, Aug 20, 2010, at 2:58 PM

The fact that cromer is able to sit at a computer and compose this blog tells me indeed he has no idea what the Nevada Rehabilitation Center is about. I would dare to say there is not one person residing at the center capable of articulating anywhere near the level of his blog. Do you, cromer, realize that these people suffer from severe mental conditions not simple physical disabilities. But cromer has no way of knowing this because like the others who got their wish and closed the doors to the homes of so many happy people, he has never been here.

-- Posted by ccmom on Fri, Aug 20, 2010, at 4:44 PM

And so the story changes yet again. Cannot believe a word they say. The last thing anyone thinks of is the poor folks who reside in the Hab Center....It is all about the money folks.Such a sad indication of our society . But wait...we have money to send to foreign countries & aide relief & wars. Whatever happened to taking care of our own? The most vulnerable members of our society.

-- Posted by katy318 on Wed, Aug 18, 2010, at 9:38 AM

I don't know if you meant to but you left out the big bankers?

-- Posted by thestirrer on Fri, Aug 20, 2010, at 7:55 PM

If memory serves me correctly, Minnesota has a much tighter definition of developmental disability. In that state qualifying for services requires an IQ level of below 70. Their institutions have been closed and people have been successfully included into the community. I understand that this is different and scary, but progress usually is. So,Titanicdoom, I am not trying to convince you that "**** is rain", but possibly, you should do some research, put the chicken Little suit away and stop trying to convince yourself and others that the sky is falling.

In response to the fact that I don't know what I am talking about, I have a friend that spent most of his life being bounced from one hab center to another. He has lived in a ISL for over 10 years now and tells me that he is so much happier now. He was in trouble quite often because of "negative behavior" but yet he has been successful in the community. People use words like "incompetent and incapable" when they don't understand the purpose of the behavior. It takes time and patience to competently evaluate and understand indirect communication.

By the way, people who consistently use the argument that "it is all about the money" are just ****** off and ignore the facts in front of them.

-- Posted by cromer on Fri, Aug 20, 2010, at 10:56 PM

But it ia "all about the money". Many of these people would be better served by staying where they are.

-- Posted by TerryB on Sun, Aug 22, 2010, at 2:42 PM

TitanicDoom, I do not appreciate the negative accusations that you carelessly threw around. You accused me of being an uncaring lobbyist and called my previous thoughts into question as to truthfulness. You seem to be confusing my multiple levels of immersion into the disability community as an indication of my untruthfulness. I AM a person who has a developmental disability, I have children with developmental disabilities and I am a member of a self-advocacy organization that exists for and is run by people with developmental disabilities. I do have a couple of good friends who lived in an institutional setting, but only used one as an example. I NEVER said that I have been institutionalized. What I said is that I am happy to live freely in the community and I believe that everyone should live and work in their community.

I would like to clarify something else. You said that I have gotten what I want and should butt out of YOUR discussion room. This brings up two points that should be addressed. First, I have not gotten what I want YET. As long as these outdated, segregated settings still exist, there is a possibility that one of my children who experiences developmental disability could lose their guardianship rights in a situation that is beyond my control, and this would quite possibly leave them at the mercy of someone like yourself who only sees a patient or a child. So, as long as places like this exist, there is a possibility that one of my children could be forced into an institutional setting. I will never let this happen and thus will not stop until every single institution in Missouri has been smashed with a wrecking ball. So, you see, this brings me to my second point. This issue is much bigger than the Nevada habilitation center, and that is why I am voicing my opinion on this blog which is NOT your discussion room. It is posted on this thing called the WORLD Wide Web that is available for everyone. If your local paper wanted to limit input, they would do so by geographic location of IP address. So, you can tell me to go away, but it won't work.

Those things being said. I would like to address the issue of my friend I discussed previously. He is a good man who is in his sixties who enjoys having his own home that he shares with another gentleman of similar age and interest. He has taken on a grandfatherly role with my children but would certainly not want to live in the chaos that is the life of a couple with children. I am proud to know someone with such a broad background, and he is welcome in my home anytime. So, do not sit there with your narrow minded, glass half full attitude and say that I do not care for my friend because he does not live with me. Why should he have to? Why should it be that a person is limited to living with someone else?

I can respect a person who has a differing viewpoint. TerryB stated that he believes that I am wrong and the people who live in the center would be better in their current living situation. I do not agree with the viewpoint but can respect his right to that opinion because he did not commit a verbal assault. TitanicDoom, it is quite obvious that we have different views on this issue, but that does not mean that we cannot gain something from a discussion. Personally attacking each other and accusing one another of things that are completely ridiculous because we do not know one another will not bring positive results for either one of our causes. So, if you continue with this negative behavior, we may need to get the medical team to limit your computer usage. Just kidding. I am open for a discussion that brings viewpoints to light and shares understanding of facts. This is why I brought up that this was successfully implemented in other states. If you have information to share in regard to something like that, I would be happy to research and increase my knowledge on the issue. I will not change my viewpoint and I would guess that you will not either, but if we share viewpoints and information, then maybe we can find a way to gain a better understanding of one another's motivation. The interesting thing is that we may differ in the approach, but we both appear to have an interest in doing what we believe is right.

Just to make it very clear, myself, my friends nor the self-advocacy organization I am a part of will gain financially from this system transition from the institutional bias that has existed for too long to a more inclusive approach to serving people with disabilities. My interest is strictly personal, and I will not go away because my opinion matters just as much as yours.

I response to the letter to the editor, if transition is approached correctly, the stress level and trigger points will be addressed in a way that takes those things into account and smoothes the edges. The fact that people are being pushed to a crisis mode in less than a week after the announcement says that someone is taking the wrong approach. People from both sides of this discussion need to address these issues with DMH to make sure that services and plans of action are in place. I am in favor of inclusion and an important aspect of that is making sure that people are served in a respectful manner that does not promote fear. In regard to the man whose guardian reacted without taking these things in to account, the guardian failed that person by not taking the time to put things in place. Things need to be handled in a respectful, nonfear invoking way. It upsets me that this has not been the case, and I will voice my opinion to DMH tomorrow.

-- Posted by cromer on Tue, Aug 24, 2010, at 5:22 PM

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