Scattered, dispersed housing = Community?

A letter from the National Council on Disability (NCD) was published urging the US Housing and Urban Development (HUD) to swiftly comply with the US Supreme Court Decision of Olmstead.  This is great – except the interpretation of Olmstead is incorrect and the NCD assumes that independent choice is the apparent optimal  goal for people with intellectual disabilities (ID).

I cannot disagree more with the Federally funded National Council on Disability, which states they represent and advocate for our loved ones. My response letter is available  here.  (May 21 letter to HUD)  Community is not a place but relationships.  NCD does not consider relationships and what those relationships mean to many in supportive communities.

We need to define choice and what that means to various people.  Those with severe intellectual disabilities with or without co-occurring psychiatric disorders are by the very definition of their condition, not able to make informed choices.  If independent choice is the apparent goal, would an independent choice of someone with severe ID and psychiatric disorder by wise and safe?  I would tend to think not.

When thinking about choice and housing it is critical to understand what type of choice is desirable – independent or supported.  One should not presume that independent choice is always the most desirable outcome.  “A well-supported choice leading to selection of a wise alternative may be preferable to a more independent but ill-informed choice that results in problems.” (R.J. Stancliffe, 2011)

With this distinction about the definition of choice and what may be safe for each individual, we then can examine Olmstead and the arguments of many regarding community housing for those with ID.

The other very concerning issue other than that of “choice” is what about the caregiver.  Does the NCD not understand that many of these people who they so want to make independent choices often need 24 hour live in and AWAKE care?  If all these people choose to have their own house, who will be there to care for them?  Does the NCD not realize that we are already in a crisis trying to find qualified caregivers for those who may live in supported communities or group homes – how will we be able to safely staff isolated and dispersed homes?

Scattered and dispersed housing does not a community make!

9 comments on “Scattered, dispersed housing = Community?

  1. Marty M says:

    I disagree. Scattered and disbursed housing CAN a community make. My son who lives in his own apartment, section 8 and companion care through a waiver program lives with other regular apartment leasers. It has made a great community! I agree, however, that every situation needs to be considered individually.

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    • Thank you for your comment and realizing that every situation needs to be considered individually. I’m glad that the housing your son has has worked out for him. I hope that others will be allowed to choose what is the best situation for them without being restricted to choices which may not be appropriate for their needs.

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      • Marty M says:

        My son has severe IDD/MH/Autism and is an adult. His medical condition requires constant attention. His housing in an apartment works well and he has not done well in any group home. He desires privacy and because of his social skills problem and noise issues, he does well in the apartment setting with a live in companion. He goes out in the community for five hours M-F. He helps buy groceries; he exercises in a local gym; he often eats out; he is not isolated but his low communication skills mean he is unable to talk with other people. His social skills mean he waves to everyone he sees but he can’t talk to them. We are working on a communication device. This works for him. People say…well what is his choice. He seems happy…he says no to things he doesn’t like. His apartment is HIS! This is the best I can do.

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  2. LynneT says:

    As the parent of a young adult with very severe intellectual disabilities and other disability issues, I both agree and disagree. My dream for him, which I truly believe is his choice, too, is living in the community in a house or apartment with roommates or life partner and support staff. Making that happen (we’re just beginning to work on it) will be very difficult. I can’t just slot him in someplace. But there are service providers who support this approach, and I’m lucky that my state does, too.

    My son can exercise informed choice in his own way. When he is unhappy, he doesn’t eat. This is a very strong signal, a very strong communication, but some service providers say, “Well, he’ll eat when he’s hungry enough.” Those are the people I want out of his life! Those are the people who staff too many segregated facilities. He makes it clear he loves being with other people his age who are doing things. He wants to be out and about. All of that is clearly communicated through behavior. Unless a person is in a coma, I think it’s a cop out to say they can’t make informed choices.

    It’s absolutely true that there is little “out there” to make this choice easy. But that doesn’t mean it isn’t worth pursuing.

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    • Thank you – yes, I totally agree that one does not stop trying to pursue what is best for our loved ones and I hope that I didn’t convey that these options are not worth pursuing. With that though, I do not believe that we need to restrict the choices to what CMS and other agencies think community settings are.

      I also think that there is a difference between informed choice and being able to make likes and dislikes known. My son can clearly let others know what he likes and dislikes but he can not make, what I would term informed choices on issues of safety, health and life management. We honor the choices that he can make though and encourage him to make choices for things that matter to him. For informed choices we generally decide what is the best of some options and let him choose within those boundaries. Is this independent or supported choice? Depending upon the definition used it could be either.

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    • Jill Barker says:

      I agree that there is a big difference between a person making his or her preferences known and making an informed choice. Before the first guardianship hearing we had for my younger son, his attorney, who was meeting him for the first time, questioned my saying that my son had no way of communicating or making decisions. He said, “He’s looking at the light. That means he is making a decision to look at the light.” This Bozo did not prevent us from getting guardianship, but it is typical of what parents have to put up with when explaining their children to strangers.

      My sons’ school was a real community for both them and my family. It had about 60 – 70 kids who had severe, multiple disabilities, in a program in the same building with a charter school. Everyone knew them and vice versa. It was 3 miles from our home and could care for kids who had the most severe medical and behavioral disabilities in the county. Their program was its own community and held an important place in the larger community as well.

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  3. trapper creek says:

    I think this may be one of those dialog threads where it helps to step back a bit and comment on the issues separately. The notion of creating community or, at least trying to help identify and put the essential ingredients together so it is more likely, is quite different from the notion of informed consent, self-direction, etc.

    Both are so highly individualized, messy and change over time. If there were a formula or one way of doing it – it would have been done already and Olmstead would not have been necessary or controversial in any way.

    Personally, I applaud the National Council for pushing HUD. I only wish we could push harder and on additional issues, like the blatant housing discrimination that still occurs throughout our country, or the poverty that most people with severe disabilities experience. Both of these present limits to where and with whom someone can begin their journey towards developing community and all the different types of relationships that make it either meaningful and rewarding or difficult.

    As a part of the provider community for over 35 years, I’m glad we still debate these important issues. Absent this type of discussion, people with disabilities and their families would be facing cookie cutter approaches and service systems that limit peoples’ choice in the name of preventing “bad decisions.”

    Been there, done that… hope never to return.

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  4. Kathy says:

    This post is part of a discussion on LinkedIn, and a gentleman disagreed. I was not having a very good day, and I’m afraid he tweaked one of my last nerves, resulting in a rather lengthy reply:

    Frank, I couldn’t disagree with you more.

    I am the legal guardian of a young man who is 25 years old. He has disabilities, both physical and intellectual, at such a profound level that he will NEVER be capable of making informed choices regarding his life. He is and has always been considered medically fragile and often requires hospitalization for his many medical issues. He is blind, cannot speak, has a feeding tube, and almost completely governed by primitive movement patterns, unremitting spasticity, musculoskeletal deformities and respiratory dysfunction. His cognitive functioning is less than one year. I have known him since he was four and he was on my physical therapy caseload for many of those years. He is certainly capable of expressing pleasure and displeasure, but we have never been able to discern any meaningful decision-making on his part. This means that others must make decisions for him based on what we know of his likes & dislikes to give him the best quality of life we can.

    For most of his life, he lived in a large pediatric congregate care setting, but when he turned 21, he had to find other living arrangements and now resides in a four-bed group home. It is one of the few in our area that provides his needed skilled nursing services. Let me address your points:

    “…the loss of freedom, independence, personal autonomy, and access to true diversity of people as well as diversity of environments and human interactions.” What kind of freedom, independence, or personal autonomy has he ever or will he ever have when he is totally dependent on others for every aspect of his care? Let me make this clear. He can do nothing for himself. Taking him outside to the mall or to a park is no spur-of-the-moment endeavor. It involves planning the activity around tube feedings and medication schedules. It involves packing up the needed supplies to carry with you “just in case”. This makes going on community outings a major undertaking, so he only gets out 2-4 times per month (and one of those is for his monthly haircut). Most of his time is spent with the small staff and 3 other residents in the living room of the house or lying in his room, listening to music. The house is its own island in “the larger community”. And this is one of the better group homes.

    Regarding diversity of the people and environments, he is much more socially isolated in his group home than he was in the large facility. He has lost the interaction with all his peers (his “brothers & sisters”) and the large and very diverse staff there. He has lost a great deal of community interaction, both out of the facility and in the facility. There are a large number of community groups in and out of the large facility that are not going to go to a small group home or private home. What private or group home is going to have The Virginia Opera come to perform one of their children’s operas, complete with sets & props? Or have regular visits by a professional sports team? Or college athletes? Or regular pet therapy with a variety of animals from the SPCA? There are many more opportunities for community interaction in a large setting than there are in a small setting. How many private/group homes have their own swimming pool, camp in the summer, girl scouts, boy’s club. The list goes on.

    “…with few exceptions, most individuals in institutions are fully supported, at a much lower cost,in the larger community.” I don’t know of many individuals in private/group homes that are supported to the extent that they are in a larger congregate setting, one that has the resources needed to provide the supports. I have several friends who are parents of children with severe/profound disabilities that have their children at home. They are fortunate enough to live in an area where there is access to specialized medical care, accessible public transportation, and other services. So, yes, they are supported in the community….when the nurse shows up on time and one of the parents doesn’t have to call in sick from work, when the replacement nurse knows how to do g-tube care, when respite can be found for an emergency. What of those families that live in rural areas where those services are in short supply, where they have to drive 2-3 hours for routine medical care? Congregate care is certainly more expensive in those instances, because the families have to foot many of the bills themselves.

    . “…it will never offer the freedom security and opportunities for increased independence and interactions than a home.” My ward will never be able to live with any degree of freedom or independence. Even if he had his own apartment, he would require more than one full-time caregiver would have control over all aspects of his life, including making all his decisions for him. How does that fit anyone’s definition of a home?

    “…the error is in not supporting and encouraging multi-generational living and other innovative housing options such as co-operatives and re-defining family to include the larger extended family of man.” I wholeheartedly agree with you here. That would indeed be an ideal world, but that’s not what we have. And until we do, people need all options available to them. For some, like my ward, congregate care was the best option, and I would love to find as good a congregate care setting for adults as the pediatric setting he lived most his life. He was happier around lots of people.

    The Arc, an advocacy group for people with disabilities, surveyed more than 5,000 individuals with intellectual disabilities, their family members and caregivers in 2011. Their results showed that:
    • 20% of families report that someone in the family had to quit a job to stay at home and support the needs of a family member with disabilities.
    • 80% of families report that they don’t have enough money to pay for the support or care their loved one’s needs.
    • 46% of parents/caregivers report that they have more caregiving responsibilities than they can handle.
    • 81% of family care providers report that they don’t have time to attend to their personal needs.

    How do these statistics show a benefit to the community when the families are in crisis? Congregate care, quality congregate care, can help alleviate these stresses. Instead of trying to get rid of all of them, why not try to improve the ones that need improving and acknowledge that they, too, have their place for some people.

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    • Marty M says:

      Congregate care might work for some if the guardian is ever vigil to see that no abuse happens. However, one friend of mine tried to be vigil but found her very hyper son so badly abused that today he is tube fed and unable to walk. He needs 24/7 special care. Mom brought him home. The state didn’t want to pay her to care for him. I would be very afraid to see my son again in congregate care. Abuse keeps being reported here in the Texas institutions. Instead of this mom having time to take care of her own needs, she is spending more time just trying to keep her son alive. Congregate care made MORE CRISIS for her! It made more crisis for me too! If you can find a safe place…go for it! Maybe Kathy found a good exception that works!

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