A Gym Membership?

Community members playing in the open field

Community members playing in the open field

 

If you cared for a young man with autism and moderate intellectual disability with the following other issues, would you consider a gym membership as an appropriate solution to his need for physical activity?

  •  significant deficits in communication, social interaction, relationship development, coping skills, long-term planning and executive function.
  • He is physically active and energetic with running, jumping and constant movement.
  • He is very high energy and needs to be constantly engaged to minimize behavior issues.
  • Communication is impaired due to his frequent need for physical activity sensory stimulation.
  • He enjoys swinging for up to 20 minutes, long walks, jumping, etc.  and sensory stimulating sounds and movement activities.
  • At times he needs staff to contact guard him due to his behavior to dart away when he sees something off in the distance which interests him or he may push and run into others.
  • He is not traffic safe

I ask this because this is a solution that has been offered to a family from the Roads to Community Living Team.  This young man currently lives in a supportive community in a campus setting.  The campus setting is ideal to benefit this young man in his physical activity needs and also for his safety.  The Developmental Disabilities Administration (DDA) wants to move this young man from the supportive community in which he is stable and safe to a dispersed home.  The family has requested he remain in the current community and their request has been denied.

The fate of this young man is now at the administrative hearing stage.  DDA has come up with some solutions under the Roads to Community Living program, to help with the transition.  One of these solutions is a gym membership (remember the RCL program only lasts for 365 days).  Do you think the gym membership is a solution to the physical needs of this young man?

If so, why?  If not, why not?

 

13 comments on “A Gym Membership?

  1. RAVEN PARVENUE says:

    My son does not need such resources, at least not yet, but I am concerned that they be available for him if/when the time comes that he does. I am not a lawyer, but this is my lay understanding of the family’s rights.

    The American Disabilities Act, Olmstead Decision (1999) protects this young man’s choice of “community” or “institution.” DDA would be in violation of Federal Law if they were to displace him against the choice of his legal representative. This has been tested in court. See below.

    The American Disabilities Act, Olmstead decision, 1999, supports a continuum of care that includes institutions as a valid choice for people with disabilities who qualify for their services.

    Right to institutional services is legally enforceable: The right to institutional services has already been tested in Federal District and Appellate Courts in Florida. In Doe v. Chiles, 136 F.3d 709 (1998) the State of Florida argued that ICF/MR services are an optional Medicaid program. The Eleventh Circuit rejected the argument, noting that even when a state elects to provide an optional service, that service becomes part of the state Medicaid plan and is subject to the requirements of federal law. Id at721.(http://lw.bna.com/lw/19980317/965144.htm)

    In prohibiting youth from RHC admission and residence Washington State violates Federal Law. The 1999 US Supreme Court decision, known as Olmstead*, does not specify “adults”, but simply requires that all persons with dd be given the residential choice between institution and “community.” It also determines that “Each disabled person is entitled to treatment in the most integrated setting possible for that person–recognizing that, on a case-by-case basis, that setting may be an institution.”

    The Home and Community Based Waiver is OPTIONAL, NOT MANDATORY, and cannot be imposed on an individual who qualifies for and chooses an ICF/MR. In fact, !CMS Regulations implementing this law stipulate that CMS will not grant a waiver…and may terminate a waiver already granted unless a state provides certain satisfactory assurances including assurances that the recipient or his or her legal representative will be 1) Informed of any feasible alternatives available under the waiver, and 2) Given the choice of either institutional or home and community-based services. (42 C.F.R. 441.302(d).

    ”Right to choose to remain indefinitely in ICF/MR services is protected by the Supreme Court decision in Olmstead v. L.C. nothing in the ADAcondones termination of institutional settings for persons unable to handle or benefit from community settingsNor is there any federal requirement that community-based treatment be imposed on patients who do not desire it. 119 S. Ct. at 2187, 17.”

    “If a state elects in its Medicaid plan (as Washington does) to offer qualified individuals services in an ICF/MR, it must provide that all individuals wishing to make application under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. 42 U.S.C. 1396a(a)(8).”

    FOR MORE IN-DEPTH INFORMATION, VISIT THE VOR WEBSITE: http://www.vor.net . See their “Toolkits” for both families and legislators. Also “Olmstead Resources.”

    My opinion only: The problem is that DDA seem to be able to get away with bullying people as long as the people don’t challenge their actions.

    Blessings for courage, strength, tenacity and success! Rave

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  2. Frank Tetto says:

    CMS waivers are an oxymoron. Community is natural and empowering. The CMS institutional bias will one day be declared to be a violation of The US Constitution.
    Why someone needs a waiver to live in his /her home, his her community, with adequate . flexible, and consumer directed and natural supports is beyond comprehension.
    No one is so medically fragile he or she can’t be supported in his / her local community.
    Institutions were established with the best of intentions. History has shown and continues to show, these facilities lead to greater dependence and risks to the life and well being of its residents.
    In addition to gym membership, there are options for joining a health club, or hiring a personal trainer. In brief, any service available in an institutional setting can be matched or surpassed in the larger community.
    The world is moving towards integration, and inclusion. Segregation and exclusion have been failed policies whenever and wherever established.

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  3. Martha Moyer says:

    A gym membership and living in his own apartment with a companion works for my son who is just like the person with autism you describel

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    • what does your son do at the gym? How often does he go? How does he indicate that he wants to go? Does he have a companion 24 hours a day? Does the gym help alleviate his need to be in constant motion? What if he wants to go to the gym but the companion is not able to take him? Is the companion live in or does he have several that work in shifts?

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  4. Frank Tetto says:

    What constitutes a home and what constitutes a community is a subject for discussion. In our case, when we asked for our daughter to receive supports to live at home we were told no funds were available.
    When we withdrew financial support and gave DDD one year notice to assist with a self determination plan DDD took no action. When the one year passed DDD had no plan for Maria to be supported in the community. Again, DDD claimed no funds were available for community living options.
    We did not back down and my daughter was placed at a NJ DDD that some describe as a country club with comprehensive integrated supports and services. Many NJ parents claim it is a great place. My daughter referred to it as a hell hole and could not wait to leave. During the 24 hours she was there she was at risk of harm from falls as well as silent aspiration. Fortunately for my daughter, this was part of our advocacy for in home and community support advocacy. She decided to transition home on the promise of in home supports.
    Most interestingly, in this country club home of hers, Dad could not stay for an overnight visit. She was not permitted to have her pets stay with her. The schedule at the facility was rigid and inflexible. The facility could not even guarantee she could practice her faith at her Catholic Parish near our home.
    The cost to be at the facility per person per year at the time was 242,000 per person per year. We quickly concluded, the individuals at this country club like DC, did not offer a 242,000 per year quality of life.
    When we asked how DDD could not find funds to support Maria at home and spend 242,000 per year to have her in a facility she did not desire to live and restricted her freedom, we were told it really didn’t cost 242,000 per year to be there. We were told it was like having a party for 200 people and the 200 and one or second guest does not really add to the overall cost of the party. We asked if NJ was billing Medicaid at the 242,000 per year rate for Maria to be at the facility. We never received a reply but I’m certain NJ was submitting for reimbursement for all country club residents.
    There should be a waiver required to place individuals in a segregated residential setting.
    No waiver should be required to receive the necessary supports to live in the natural and empowering environments of Family, Home, and Community.

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    • There seems to be great variation from state to state with regards to supportive communities and dispersed housing in addition to supports and services available to those with ID and also the ability at access those services.

      There are tragic stories from all states and from all types of communities – it takes advocacy in order to provide the choice of the family and individual.

      There are limited resources to begin with and the fact that state and federal programs are not funded adequately adds to the crisis situation.

      Luckily your daughter had advocacy to help her with her choice. It is not easy by any means and it’s shameful that our loved ones need to fight so hard for the basics of health and safety. It is critical though that we support choice for the individual.

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      • Frank Tetto says:

        I believe in choice. Check out where NJ stands today in reference to community options for persons with developmental disabilities. It is hard to believe NJ has made substantial progress in reference to increasing community choice options for individuals.
        NJ despite the progress still spends the majority of its funding on providing supports to individuals in institutional settings. Indeed, individuals in the community which represent the majority of persons with disabilities living in NJ receive approximately 10% of DDD funding. The statement is worth repeating, the over 50% 0f DDD population in NJ receives only 10% of the funding stream.
        There are plans to close two of the seven remaining DC’s in the next few years.

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        • The issue of cost and what percentage of the people get what percentage of the pot is not the way to look at costs.

          One needs to look at the support needs of the individual – those with higher support needs will have a higher cost – no matter where they choose to live.

          Many look at the average cost for care – when doing this it is impossible to see that those with the higher support needs have a higher cost and then if you compare the cost of one person with higher support needs to the “average” cost one gets a very skewed view of the distribution of resources.

          This is easier to see when looking at the cost reports which community agencies submit annually to DDA – one can see very clearly that those with the higher support needs have costs much higher than the average cost reported.

          Also, one needs to know what is covered in those costs – are the costs comprehensive (medical, dental, nursing, pharmacy, OT, PT, SLP, Psychologist, Behavior specialist, vocational training, nutritionist, etc) or direct care costs only? These are all issues that are generally not reported when comparing costs.

          Looking at the cost of direct care for individuals is better method to understand the range of care costs and to see who is getting this care. In doing this type of research you will find that those with the highest support needs will have the highest care costs – and this will be a minority of the population as a whole. Does that mean that you would deny those with higher support needs the needed care to keep them safe because they cost more than the average?

          The links below may shed some light on what the costs mean and how they may be reported.
          https://becausewecare1.wordpress.com/wp-admin/post.php?post=2346&action=edit
          https://becausewecare1.com/2013/06/21/fact-or-fiction-part-2/
          https://becausewecare1.com/2013/06/20/fact-or-fiction/

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          • Frank Tetto says:

            The issue is complex. At the time when 60 % of a given population receives only 10% of allocated funds, it indicates the funding is not fair or fairly distributed. In reference to the 60% of the population in the community, There is no doubt that for every person in the DC’s or private institutions, there is at least one or more individuals in the community with similar or even greater challenges. Community is more cost effective then institutional living. The greatest costs of institutional programs however is not in dollars but the quality of life and independence of the persons in the facilities. Follow-up studies of individuals who transitioned from state run developmental centers to community options have consistently shown, individuals who transitioned to community options enjoyed a better quality of life and increased their independence. Indeed, surveys of parents who once opposed the closure of a facility have also shown that after the closure they are satisfied with the progress their son or daughter made in the community after transitioning from a facility. The history is clear, Developmental Centers will be downsized and close. Today’s parents, raising young people with disabilities do not see the large segregated facilities as a viable option for their son or daughter. Consolidation and closures of the large institutions is inevitable. Families and advocates need to work together to develop safe and secure living options for all.

            On Sun, Jul 7, 2013 at 6:06 PM, Because We Care – Beyond Inclusion wrote:

            > ** > Because We Care – Beyond Inclusion commented: “The issue of cost and > what percentage of the people get what percentage of the pot is not the way > to look at costs. One needs to look at the support needs of the individual > – those with higher support needs will have a higher cost – no matter where > the”

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            • Frank, I have to disagree with you. Have you read recent research regarding family and individual quality of life? Have you read the research of those who have written extensively on deinstitutionalization and the benefits of it? Many of these authors have come to the conclusion that it is more expensive for those with high needs in the community and moving to dispersed housing is essentially isolation. Have you read about extremely high staffing turnover (up to 50% in some areas) of direct care staff? These are issues which directly affect the quality of life of those who rely on others for their health and safety.

              Yes, I do believe that anyone could live in dispersed housing and have a good quality of life but that would be if there were unlimited funds. Unfortunately that is not the case and we need to think of the good of the whole.

              The King County Advocacy and Outreach coordinator in our state who is adamantly against supportive communities stated to the DD Task Force this year that people with high support needs can live in the community and proof of that was the fact that his son, who had 19 hours of nursing care a day lived at home for 17 years. If there were many people who needed that level of care and they all wanted to live in their own homes, do you know what that would do the share of the funds for those with less intense needs? They would have nothing.

              I totally agree that families and advocates need to work together for safe care for all – what is right for one person is not right for another person even if they may appear to have the same support needs. This is why I support a continuum of care which includes the supportive communities. I have seen great benefits from these communities and I oppose the consolidation and closure. In my opinion they could be utilized much better by becoming centers of excellence specializing in the needs and services that those with ID tend to have and which the mainstream healthcare and social service agencies are unable to manage well.

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  5. Frank Tetto says:

    We agree to disagree. The trend is clear and not stoppable. DC’s and other large institutions will be consolidated and closed. Many states have shown this is feasible.
    I understand change is difficult and the adjustments required to change take time.
    The forces of greater freedom and greater responsibility can’t be stopped.
    If you look at the numbers both within DDD community, the mental health community, and the senior population community, more and more individuals are choosing community options.
    In my opinion the process needs to be accelerated. Irrespective, I do not believe the process can be stopped. We are in the twenty first century and institutions were a 19th century idea and a 20th century option. The 21st century is the century of transition to individual funding and support models. Families, guardians, and individuals with disabilities should have the option to create new congregate facilities. I believe firmly, few families will choose to create new institutions or purchase services and supports in an existing government sponsored or private facility.

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