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11/8/2012
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My Community Care Team


  • Independent Individual & Family Services Professional
    We are very interested in being guest bloggers. Following is a position paper our team replied to and expressed a similar but very different point of you. To fully appreciate both the position papers of The New American Movement and our reply. It is submitted both as an example of our writing but more importantly to advocate for community inclusion for all

  • New American Movement for People With Disabilities
    But First, Do No Harm
    By Ed Heaton

  • Twice in the last month, Wendy English has been in the news. Articles in both The Record and The Star-Ledger have detailed Ms. English’s struggle as she prepares to change developmental centers from Woodbridge to New Lisbon. Ms. English is a highly-functional person with both physical and psychological disabilities. In many ways, her story is an advocate’s nightmare.

  • For well over fifty years, advocates for the disabled have campaigned to close institutions. And, replace them with what? Prisons, that’s what. It’s the law of unintentional consequences run amok. USA Today recently ran a four-part series about how persons with mental illness are overwhelming police departments around the country (see link at end of column). As institutions around the country have closed, community resources for those with mental illness have not matched the number of persons with mental illness released into society. Without proper funding of community-based alternatives, the needs of these people are often shifted to the criminal justice system.

  • Since the Olmstead decision of 1999, advocates for people with disabilities have continued to push for the elimination of institutions. Governments have eliminated the institutions without shifting the funding of the institutions to community-based services. Another example: in a recent New York Times article, it was stated that the inmates in New York City’s Riker’s Island prison most assaulted by guards and put into solitary confinement are those with mental illness.

  • Finally, there’s Wendy, who while not in prison, is being forced to make hard choices by New Jersey’s closures of its remaining developmental disability centers. Totowa closed this past June, and Woodbridge is scheduled to close by the end of the year, leaving people like Wendy with multiple needs to be forced to change living situations that have served them well for years.

  • Independent Individual & Family Services Professional Advocates have written that Wendy never knew of life outside of an institution, so therefore, how can she know the benefits of living in a group home or non-institutionalized setting? Wendy had a life at Woodbridge, and was comfortable there. She had many friends and also a job working at Woodbridge. All of the things that Wendy had going for her, friends, a job, a comfortable environment, are things that we, the advocates, would support, were she in a community-based setting. Does being in an institution make Wendy’s decisions about her life any less valid? More importantly, are any of us, either as agencies or advocates, willing to take on the cost of providing care for Wendy without government support? Until we are, we should step very lightly as to our criticisms of her views.

  • In no way does this mean that I am against the closing of institutions. I am all for it, provided that those who function well there are given suitable alternatives. Any advocate who argues against Wendy English risks being seen as unkind and uncaring by the non-disabled world. If they are seen that way it will make their advocacy for other issues less effective.
    How should we approach this problem? First, we should realize that this is probably the last generation that will want institutionalized care in any form. As advocates, we have done a great job of diverting new cases from mental institutions. This then becomes a generational issue. As the older generation, who prefers – and yes, needs – institutionalized care ages out and dies, the younger generations of people with disabilities will either be cared for by their families and/or, hopefully, diverted to community-based services.
    Just because there is a law saying that states have to provide services in a community-based setting, doesn’t make it so. As advocates, our responsibilities to both current and future generations, are to continue fighting for full Olmstead funding, not the half-assed hodge-podge that state and federal governments have created since 1999.

  • By accomplishing that, we will truly begin to guarantee a complete life in their communities for people with both physical and psychiatric disabilities. If we do not achieve this goal, then those of us who need help the most will be helped the least. They are already imprisoned by their mental illness. Let’s not make it worse by consigning them to the societal dustbin of actual prison.
    --------------------------------------------------------------------------------------------------------------------------------

    Independent Individual & Family Services Professional
    My Community Care Team is in favor of closing institutions. I know they will
    close and the sooner they close the better. The question we need to ask is why
    Wendy is entitled to institutional supports and many thousands of
    individuals with disabilities and their families are not entitled to in-home and
    community supports at even a quarter of what NJ taxpayers and federal
    taxpayers contribute to Wendy's level of care.

  • One possible answer is that change may be upsetting to Wendy. Change,
    however, is part of life. Staff quits or is fired. A new administration institutes
    new policies and procedures. Family members and friends become ill.
    A storm like Sandy or Katrina or an earthquake may require a transfer of all
    residents to an emergency center. People become ill and are hospitalized.
    CHANGE IS INEVITABLE. CHANGE IS PART OF LIFE.

  • The lack of change, the lack of opportunities for personal autonomy and
    increased personal choices, and the lack of opportunity for diverse interaction
    and individuals in diverse communities and settings are just a few of the
    reasons institutions must close now, not two decades from now.

  • There is also empirical evidence that the majority of individuals and families
    including families who opposed and feared the closing of institutions,
    when interviewed as a follow-up on quality of life, safety, and increased
    independence reported the move to in-home and community supports was
    very positive for both the loved one with a disability and the family.
    In my own experience in the late 70's working as a houseparent in a group
    home, I never encountered an individual who wished to return to an
    institutional setting. I have a daughter who in all likelihood has more physical
    challenges and similar cognitive challenges than Wendy.

  • Why do families who have a loved one with a disability at home need
    to fight for as little as even 10% of the support Wendy and less than
    1% of the total DDD population receives in a developmental center?
    Why do these families have to wait for decades for needed supports?
    Who speaks for these families in their golden years and their adult child
    with a disability?

  • Why does CMS have and approve institutional waivers?
    Why is a community waiver needed to live in the natural and empowering
    environments of family, home, and community?
    As to Wendy and other individuals who desire to continue to live in institutions,
    I believe NJ and other states should request CMS to abolish all community
    waivers and if CMS objects or stonewalls, Protection and Advocacy
    organizations together with advocacy and pro-bono law firms should file suit
    to have the existing CMS community waivers, which include some, exclude
    many and too often have decade long waiting lists meet the Constitutional
    protections in The US Constitution, and the protections of the historic ADA
    Legislation? The supreme court Dred Scott decision was nullified by
    legislation years later. CMS Community waivers will be abolished either
    through the courts or by legislative action. We welcome anyone to explain
    why a waiver is needed to live in the community or she wishes to live? Why
    must any individual, who needs supports to live independently give up his
    constitutional rights to freedom, liberty, and personal autonomy to receive
    basic human service supports? ( Continued) Independent Individual & Family Services Professional My Community Care Team is in favor of closing institutions. I know they will close and the sooner they close the better. The question we need to ask is why Wendy is entitled to institutional supports and many thousands of individuals with disabilities and their families are not entitled to in-home and community supports at even a quarter of what NJ taxpayers and federal taxpayers contribute to Wendy's level of care.
    One possible answer is that change may be upsetting to Wendy. Change,
    however, is part of life. Staff quits or is fired. A new administration institutes
    new policies and procedures. Family members and friends become ill.
    A storm like Sandy or Katrina or an earthquake may require a transfer of all
    residents to an emergency center. People become ill and are hospitalized.
    CHANGE IS INEVITABLE. CHANGE IS PART OF LIFE.

  • The lack of change, the lack of opportunities for personal autonomy and
    increased personal choices, and the lack of opportunity for diverse interaction
    and individuals in diverse communities and settings are just a few of the
    reasons institutions must close now, not two decades from now.
    There is also empirical evidence that the majority of individuals and families
    including families who opposed and feared the closing of institutions,
    when interviewed as a follow-up on quality of life, safety, and increased
    independence reported the move to in-home and community supports was
    very positive for both the loved one with a disability and the family.
    In my own experience in the late 70's working as a houseparent in a group
    home, I never encountered an individual who wished to return to an
    institutional setting. I have a daughter who in all likelihood has more physical
    challenges and similar cognitive challenges than Wendy.

  • Why do families who have a loved one with a disability at home need
    to fight for as little as even 10% of the support Wendy and less than
    1% of the total DDD population receives in a developmental center?
    Why do these families have to wait for decades for needed supports?
    Who speaks for these families in their golden years and their adult child
    with a disability?

  • Why does CMS have and approve institutional waivers?
    Why is a community waiver needed to live in the natural and empowering
    environments of family, home, and community?
    As to Wendy and other individuals who desire to continue to live in institutions,

  • I believe NJ and other states should request CMS to abolish all community
    waivers and if CMS objects or stonewalls, Protection and Advocacy
    organizations together with advocacy and pro-bono law firms should file suit
    to have the existing CMS community waivers, which include some, exclude
    many and too often have decade long waiting lists meet the Constitutional
    protections in The US Constitution, and the protections of the historic ADA
    Legislation? The supreme court Dred Scott decision was nullified by
    legislation years later. CMS Community waivers will be abolished either
    through the courts or by legislative action. We welcome anyone to explain
    why a waiver is needed to live in the community or she wishes to live? Why
    must any individual, who needs supports to live independently give up his
    constitutional rights to freedom, liberty, and personal autonomy to receive
    basic human service supports? 

  • Independent Individual & Family Services Professional
    My Community Care Team proposes that if CMS wants to remain in the
    waiver business, an institutional waiver must be established to permit individuals and families apply for the right to live in an institution. The waiver must allow for rights of appeal and must protect the wishes and aspirations as well as the best interests of the individual with disability and not the wishes and desires of family or guardians. Just recently, a family objected to their adult child getting married. The adult child went to court and won the right to marry.

  • Guardians of persons with disabilities including the state all too often forget
    guardianship requires a fiduciary duty to act in the best interest for whom
    they are guardians. Guardianship does not give anyone to control someone's
    life like a puppet on a string.

  • Please answer these questions: Why do a few families who have received
    the greatest amount of dollars in the DDD budget to support their son,
    daughter,sibling in an institution, for decades, believe their family member is
    entitled to the level of support he or she currently receives? Why do a few
    legislators support the continued isolation and segregation of people, in freedom limiting segregated facilities? I suggest NJ legislators pass legislation to end the NJ waiting list for services. The wait list for adult services is decades long and children with disabilities living with family receive few if any supports, irrespective of need. Where is the concern and compassion for the struggles that these families and individuals face.

  • MCCT further suggests, the Family Support Budget be increased to meet the
    increased inflation adjusted costs of Family Support. I challenge DDD
    and The Department of Children and Families and our Legislators to increase
    funding for family support on a per person basis to an amount plus inflation adjustments since family support was initiated in 1993.
  • On a related matter, people with disabilities in out of state institutions
    should return to NJ or apply for residency in the state they live.
    How does one maintain NJ residency and live in another state for decades?
    Someone please explain!!!!
  • MCCT disagrees with many public policy decisions of Governor Christie's
    administration. MCCT, however, applauds our governor's decisions on
    two related actions. 1) The closure of two state institutions. (MCCT favors
    closing all state and private institutions and requiring current residents of
    institutions to apply for a waiver or a reasonable accommodation, as provided
    in the Americans with Disability Act to continue to live in an institution.
    If individuals with disabilities and their families and or guardians believe it is
    in the best interest of someone to continue to experience only a small
    part of all life has to offer, the individuals and families ought to apply for a
    reasonable accommodation as provided under the ADA in order to continue to live in freedom limiting and segregated communities. 2) In closing and consolidating DDD and mental health institutions, our governor is taking on powerful unions and vested interests that previous administrations failed to address. MCCT applauds our governor to placing the best interests of our most vulnerable citizens above the politics.

  • Maria Tetto and Frank Tetto - Co-Founder My Community Care Team
    Advocates for Family, Home and Community Inclusion
    www.mycommunitycareteam.com///973-691-8619




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