Families with younger children and teens – protect their choice!

I am writing as a parent concerned for other families who will loose their choice of community settings.  The definition of community is going to be restricted by an artificial definition specifically for those with intellectual disabilities (ID).  People with ID will not be able to choose where they want to live, will not be able to live in any supportive community, inclusive community, within walking distance to other people with ID with the definition that is being considered.  The “community” for people with ID will be isolated and dispersed housing making it virtually impossible for many to congregate and meet other people.  This is called “inclusion” but I call it “inclusion delusion.”

It is extremely unfortunate that many families are loosing this choice and are not even aware of their loss.  It is being decided for them by those who are misguided with policies regarding the Olmstead decision.  Rather than being allowed to be informed and make their own choices, our government is in the process of destroying communities which are safe, stable and sustainable so these families with younger children will never know what they are being denied.

Today, I met with a mom and her 15 year old son.  She asked me how she can look into having her son live at the supportive community where my son lives.  She said that she had asked the case manager who told her that she would not want or need to look into this community.  Developmental Disability Administration (DDA) does all it can to keep people out, even those who are so desperately asking to  access these needed services.

What was interesting is that this mom knew intuitively that the supportive community would be a much better place for her son than a dispersed home.  She said her son would just be sitting at home all day but with this campus there is so much to do and one can go out and walk and not be stuck inside until the staff was willing or able to take them out.  I told her that we really need to hear from people like her, people who have their children at home but know that they will need more help in the future.  These are the people we need to have write letters and contact our legislators, they are the ones that we need to stand up and speak at The Arc meetings, these are the ones that we need to support so that they will have support and choice in the future.

The more people we have come visit the supportive community, the more support we will have for true choice as outlined in Olmstead.

 

Ravanswold flier – a type of supportive community

Tierra Village

 

LTO Ventures lists “Communities to Know” at this link:

http://ltoventures.org/communities-to-watch/

This will give you a good description of supportive communities which are sprouting up to care for our loved ones.

 

 

 

4 comments on “Families with younger children and teens – protect their choice!

  1. Martha Moyer says:

    Some states do not offer the concept of supported community. Would like information on what states offer this and in what way and for what ages of people. Texas has agencies that support group homes with 4 to 6 people living together. Is this the definition of supportive community?

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    • I am not sure what various states may offer with regards to a supportive community. I do now that the definition of “community” which CMS is looking at does not include supportive communities.

      There are various types of supportive communities. Saskia has described our state system very well in her reply. There are others which are not “state” run. The problem is that most of our citizens with ID do receive some form of financial assistance through the HCBS waiver or other federal monies. With the artificial restrictive definition of “community” CMS is considering only allowing those funds to be used in these restrictive communities. This type of system is the opposite of person-centered care and removes choice from the individual and their family. It this policy is put into place it will restrict community further and isolate more and more people because they will not be able to use their funds to live in the community of their choice.

      In Washington State we have a new supportive community just starting called Tierra Village (http://www.tierravillage.org/) which has developed over several years and is based on the Camphill Model. Camphill (http://www.camphill.org/?cat=3), LTO Ventures (http://ltoventures.org/), Promise (http://promiseinbrevard.com/), Ravenswold (see link to flyer) and many others which are listed on this link at LTO Ventures (http://ltoventures.org/communities-to-watch/) are examples. There are several in Texas on this list.

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  2. saskiadavis says:

    Hi Martha,
    In Washington State, I would call residential habilitation centers (RHCs) “supportive communities”, though, to my knowledge, there is no such official definition of “supportive community”. (Cheryl, please correct me if I am wrong.)

    RHCs, are campus-based mini-communities. Some may have “Intermediate Care Facility for people with DD/ID (ICF-ID) & Nursing Home (NF-ID) components. Others carry only one of those designations. One huge value of both of those official designations is that strict audits by federal standards assure safety as well as high quality care and programs because passing the audits is required for federal matching funds (A strong incentive).

    RHC homes are shared duplexes or apartments, decent but not fancy, specially adapted & equipped for the needs of their residents. Bedrooms, especially, are personalized. Residents share well trained, well-supervised caregivers & conveniently centralized, professional services on Campus: medical, dental, physical, occupational & speech therapies + behavioral psychology, assistive technology, pharmacy and dietitians. Although turnover does occur, the level of continuity of care is impressive. A sense of family often exists between residents and staff. Close proximity of professionals means that they have ready access to each other for consultations, which benefit residents.

    There are also: work training programs suited to the abilities/developmental level of the resident and recreation programs assuring structured, inclusive activities beauty/barber shops, stores. Every resident has an interdisciplinary team (IDT) that includes the parent or guardian and habilitation plan administrator + relevant professionals. Habilitation plans are individually tailored by the IDT for the needs and goals of / for the resident. Plans are revisited quarterly or oftener as needed. As deemed safe/appropriate by their IDT’s some residents roam the campus. It is not at all unusual to find such residents visiting other residents, as well as administrative offices and the cafeteria on campus. Also, they develop friendships and, often, can be seen together, out on campus. RHCs, as mini-communities, are part of their surrounding communities.

    As it happens RHCs in Washington are state-run. One of the objections to them by people whose family members do not live in them is that the standards are kept high by the audits, which, in turn requires the state to spend the money to meet them. (Half of that money is then returned to the state by the federal government.) In 1988, there was a recommendation made by a bureaucratic committee in DSHS at the State level to close the RHCs so that the high federal standards would not have to be met. No kidding, this was reported in the commitee’s report, often referred to as ‘The Struck Report.” The assumption was that the money devoted to keeping the high federal standards in the RHCs could then be spread around in the community. What was not recognized or said (and still, too often, is not) was that people with high acuity needs would still need the same care, and so would be as or more expensive to serve in non-RHC settings unless their care and services were diminished. For the most part, the people who would benefit from such closures would be vendors, not the displaced residents. Since 1988, almost every year, parents and guardians of people living in RHCs have had to defend against legislation to close one or more or downsize them toward eventual closure. In the meantime, non-RHC resources for people with id/dd have expanded, but not the standards/supervision/oversight to keep high standards of safety, care and programs in non-RHC settings. For some reason, such practical quality assurance does not seem to be the agenda of those pushing for RHC closures.

    The hue and cry in this state is that RHCs are too expensive. The truth is that if allowed to fill to the level dictated by the market (those who exercise their Olmstead right to choose to live in them,) they would would be fine examples of economy of scale decreasing per-capita costs. But by artifically decreasing their population size, the per-capita costs keeps being raised. Still, Cheryl has uncovered community costs that have not normally been presented when cost comparisons are made. As her charts show, when those costs are factored in, RHCs still remain the better bargain, providing inclusive residential living with centralized services and a higher quality of life than is often found outside them for people with similar capacities and needs.

    I realize that I digressed. In doing so, it is my hope that you might be able to compare with your experience in your state, the considerations I have shared. Coming back to your question, Martha, I would consider any program that offers a shared range of good care with centralized supports and amenities to be a “supportive community for people with id/dd.” Having safety and room to roam for those capable of it would also help it be a community. A stand-alone group home might be part of a larger system of supports, but I still would consider it a home, not a community.

    I will be interested to see others’ responses.
    Saskia

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  3. Thank you, Saskia, for your thorough description of the supportive community in our state.

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