Tag Archives: New York DOH

We Are Not Children, the Assault on CDR & Fighting Segregation

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I must’ve forgot to read the paper or watch the news  that day.  What day, you ask? The day the universe decided that if an adult has a disability he or she reverts to age three and, on top of that, morphs into a liar and because of this, forfeits their rights be treated with respect. Not surprisingly, the loss of respect translates into another loss, our rights, including our right to live in the most integrated setting.

One again, people are fighting against segregation and the dehumanization of people – like me – who live with a disability.

Right now, for instance, people with disabilities are under assault in Monroe County New York because a county executive named Maggie Brooks issued a rather sleazy and disingenuous directive that ends a contract with the prestigious non-profit Center for Disability Rights and, as a result, creates carnage in the lives of people with disabilities and, coincidentally (not!), looks to add money to the coffers of for-profit companies.

On the individual and community fronts, people with disabilities are almost habitually treated as if they are dishonest little children who barely have the right to call themselves human beings.

The assault on our right to respect and equality is both global and individual. As the several thousand regular readers of this blog know, I have to move to a new home. There is a subsidy in place that helps me with rent. It will transfer to my new home (once it is found) but, were there to be a gap between my leaving this home and finding a new one, I would not be able to retain the subsidy. Recently my current landlord called me to tell me someone from the New York State Department of Health had called them to ask when I was moving.

First, the person from the DOH does not have a signed release from me and may well have violated the HIPPA law by talking to my landlord in the first place. Second, I am being treated as if I am a liar. Not good. This incident with me is simply a small appendage of the kind of abuse people with disabilities in this country endure day in and day out.

We are all responsible for supporting each others equal rights. I would urge you to visit the CDR site and do all you can to support them. By supporting their rights, you support your own.

Oh, it should not surprise you to learn I’ve filed a complaint in response to the call made to my landlord. However, it would be both wrong and highly inaccurate to condemn the NY DOH as a whole for the actions of one person. There are some remarkably wonderful and dedicated people in the DOH.

The TBI Waiver: Seeking a Household Unified

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New York State’s Traumatic Brain Injury Waiver came into existence in 1995. Essentially it is an admirable Medicaid program that offers a set of services that help people with brain injuries remain in the community and, not incidentally, costs far less money than keeping people in nursing homes.

Recently I am hearing some deeply disturbing  things, including, but not at all limited to, the following:

    • Survivors of brain injury are being told their services will need to be cut by contract employees of the New York State Department of Health who are not experts in the field of neurology and therefore would appear to be making decisions they do not appear qualified to make.
    • There is a service offered by the waiver called Independent Living Skills Training. According to the DOH’s waiver manual ILST “services may include assessment, training, and supervision of, or assistance to, an individual with issues related to self-care, medication management, task completion, communication skills, interpersonal skills, socialization, sensory/motor skills, mobility, community transportation skills, reduction/elimination of maladaptive behaviors, problem solving skills, money management, pre-vocational skills and skills to maintain a household.  ILST services are individually designed to improve the ability of the participant to live as independently as possible in the community. ILST may be provided in the participant’s home or in the community. This service is provided on an individual basis.”          However, I am hearing that survivors are having their ILST services cut against their will. Now I am sure that were one to look closely at those receiving ILST services there may very well be cases where services should be reduced, or stopped altogether. However, the problem, and it is a potentially dangerous one, is that the decisions to cut these services appear to again being made by people not qualified to make them.
    • There is another waiver service called CIC, Community Integration Counseling. CIC is essentially talk therapy designed to help a person living with a brain injury come to terms with living life with brain damage. Now I am hearing some survivors are being told to turn to the mental health community for their counseling. Again, dangerous. A brain injury is an injury, not an illness. Period.
    • I have also had some reports that some New York DOH contract employees are saying the waiver was never meant to be a permanent support for people with brain injuries. First of all, that is disingenuous, secondly, brain injuries do not entirely heal, and there are lifelong deficits some of us live with that will require support for us to remain in the community.

Now, I would be wrong to villainize the New York DOH as a whole. Like all government agencies that are under pressure to cut costs. All the more reason they deserve advocates standing with them against any and all forces that continue to put the quality of lives and the lives themselves at risk. Therefore all parties need to be at the table: the New York DOH, the Kahrmann Advocacy Coalition, the New York State Brain Injury Association and the Providers Alliance, a group of  40 or more waiver service providers.

Everyone involved in regulating and providing services as well as advocacy for people with brain injury should be at the table looking to remedy things. No one party, including the DOH, should be made or choose to go it alone.

Lincoln was right when he said, “A house divided against itself cannot stand.” A household unified can stand and then some.

 

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2010: Rethinking It All & Thanking My Readers

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By and large 2009 has been a rewarding year for me.  It’s had it’s blows but all years do, nothing new there. The readership of this blog has more than doubled from last year. At times more than 2,000 viewed these pages in a given month. While a large majority of the readers are from my country, there have been readers from around the world: Canada, Israel, Saudi Arabia, Great Britain, France, Slovenia, India, Korea, Ireland, Columbia, Romania, Brazil, Australia, Morocco, Norway, Paraguay, South Africa, Thailand, Taiwan, Luxemburg, Croatia, Spain and so on.

I cannot tell you how grateful I am to those of you who visit here, whether you are stopping buy one time or, like more than I ever imagined, you stop by regularly. You can be sure this blog will keep going. In fact, this is the 228th piece I’ve written for it this year alone.

This year has had some fine realities:

  • I am still sober and without my sobriety, none of what is wonderful in life would be available to me.
  • A workshop I began in early 2008 for survivors of brain injuries and others continues to flourish and will celebrate its second anniversary in early 2010.
  • My friendship with Michael continues to show us both we are brothers, and my love for my nephews: Vincent and Philip, and now Jay, is as powerful as can be. My love for Frieda, Michael’s wife of the heart, runs so deep she is, without question, family to me too.
  • I saw Tischa Toon,  my childhood friend, who I love very much, for the first time in years, met her husband, David, a beautiful human being, and saw pictures of their sons.
  • I have a group of wonderful male and female friends and am forever grateful.
  • The survivors of brain injury, their loved ones, and all others who come to my workshops and those I have met throughout this state are people I genuinely care about and, in many cases, genuinely love. Whatever good I may bring to their lives pales in comparison to the good they bring to mine.
  • My advocacy has done some good this year, I hope, and for those who know that streak in me, you can be sure it is as alive and well and as tenacious as ever.
  • I met Christine Mansfield in Cape Cod and fell completely and utterly in love with her. And just in case that wasn’t enough, I met her daughters, Emily and Anna, extraordinary young women in their own right, and love them both.
  • I am on the New York State Council on Independent Living and I can tell you that is one spectacular group of people.
  • Although on disability, life is wealthier than ever.

This year, like any year, has had its not so fine realities as well:

  • My friend Jimmy died too soon at age 57. There is a little less light in the world with him gone.
  • I met some who offered lip-service friendships with love and loyalty firmly tied to the foundation of hot-air.
  • While there are some positive signs and things may be looking up in my state for people like me who live with brain injuries, we are not out of the woods, and I and those connected with me around the state are paying close attention.

On the horizon:

  • There are some new steps on the advocacy to be taken this year, one is already underway, the formation of a statewide coalition of brain injury survivors so that we too will have a unified voice.
  • I will devote more of this year to writing than ever before and may cut back in other areas to do this.
  • I am quietly adding things to my bucket list and will be acting on them.
  • I will begin writing a piece this year revolving around my experience of my state’s relationship with those of us who live with brain injuries
  • And more….

In the meantime, please take care of yourselves and each other. Don’t forget to say I love you to those you love. They deserve to hear it and you deserve to say it.

And, remember to live. Thank you again for reading this blog.

Warmth and respect to you all,

Peter