Author Archives: Peter Sanford Kahrmann

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About Peter Sanford Kahrmann

Writer, disability rights advocate, civil rights advocate.

Anna, Emily & A Little Bit of Jazz

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They are like jazz. Two sisters with colorful personalities packed with formidable supplies of creativity, intelligence and courage, who are truly good and decent people.

I fell in love with their mother last year. She too is like jazz. When the jazz trio is together (and when they are not, come to think of it) the closeness between them is palpable and this is because they are safe being who they are with each other. Challenges faced are seen and treated as experiences to be managed and resolved, not as opportunities to judge, damage, control or abandon each other. The deep love between these three people flourishes because it rides the wave of acceptance.

No relationship of any kind can be a healthy one if the people in the relationship can’t be who they fully are in the relationship. When I watch Anna and Emily, the glow of the joy they experience with each other is so strong I’m pretty sure I can read by their light. When they’re with their mother the glow is so strong I can read by it, but need to wear sunglasses.

I know there may be some who flinch and recoil when they learn someone they’ve fallen in love with has children. Not me. Falling in love with their mother, Christine, was like discovering this extraordinary landscape in life. Discovering and meeting her two daughters was like discovering this extraordinary landscape has two beautiful lakes on it. I am a lucky and blessed man.

Emily is 24 and Anna is 20. These two young women are doing wonderfully in life, far more than I think they give themselves credit for.

I love them, their mother and jazz. It doesn’t get much better than that.

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Kahrmann Coalition Meets with NY DOH Officials

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In a wide ranging conversation marked by mutual respect and openness, representatives of the Kahrmann Consumer Advocacy Coalition met with Mark Kissinger, deputy commissioner for the New York State Department of Health, and members of his staff.

As founder of the KCAC, and one who will never blink when it comes to my support for the equal rights of all people, in this case, people with brain injuries and their families, today’s meeting very much appeared to be the beginning of what I suspect both sides hope will be an ongoing healthy dialogue.

The DOH said a newspaper article reporting that a hold had been put on the transfer of brain injury survivors consumers to licensed home care agencies was mistaken. While Kissinger and his staff  could not guarantee no consumers would wind up in nursing homes as a result of the transfer of services,  they assured us they were working on a daily basis with providers, focusing on each individual consumer, to make sure consumers are not going without the home and community support services they deserve. Moreover, the DOH said it is strongly discouraging nursing home admissions.

As for the timing of the late-December 2009 directive to providers requiring they transfer home community staff services to licensed home health care agencies in 30 days, Kissinger and his staff said waiver providers were told in 2006 that all agencies providing home and community services were required to be licensed home care agencies and, in 2007, were notified  of this requirement in writing. According the DOH, providers were directed to be in compliance by the end of September, 2009,  had that deadline extended to the end of December 2009, and then had that deadline extended another month.

A number of other possibilities were discussed, including, but not limited to:

  • Quarterly meetings between the KCAC and the DOH.
  • Quarterly meetings between the KCAC, the DOH and an alliance traumatic brain injury waiver health care providers.
  • Increase reimbursement rates for providers
  • The establishment of reimbursement for staff training relevant to the population being served.
  • Including KCAC members as unpaid participants on  DOH survey teams.
  • KCAC meeting consumers across the state in day programs offered by waiver providers.

As a civil rights advocate on all fronts: women, gay and lesbian, people with disabilities, blacks, Latinos, Jews, Muslims, and so on, and as one who lives with a brain injury, I, like many others, know only too well  what it is to be condescended to, or patronized. We were in no way treated like this by Mark Kissinger and his staff.  We were not condescended to or patronized, we were not rushed to end the meeting, and while all the answers were not every inch of what we hoped for, no question we asked was ducked or avoided. We were treated as equals. And that, no matter how you slice it, is good news.

Today was a good beginning for the relationship between the KCAC and the Department of Health. Next, we will be seeking to meet with the Providers Alliance and, of course, we look forward to a follow-up meeting with Mr. Kissinger and his staff.

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Equal Rights Are Not a Budget Item

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Bigotry never trumps freedom and freedom is not possible without equal rights.

And so it is that people with disabilities are being told having equal rights depends on the economy, thus relegating them to a budget item.

ADAPT, the country’s most prestigious disability rights organization in this writer’s view, has  launched a Defending Our Freedom campaign to address the carnage being inflicted on the lives of people with disabilities. Across this country state budget cuts are forcing people with disabilities, as well as seniors, back into nursing homes, all this in direct violation of the 11-year-old  United States Supreme Court Olmstead Decision which says Americans with disabilities have the right to live in the most integrated settings.

The Kahrmann Consumer Advocacy Coalition (KCAC)  completely supports the ADAPT campaign.  The KCAC will be seeking to address one of the symptoms of this attack on the rights of people with disabilities when members of its leadership team meet Friday with Mark Kissinger, a deputy commissioner in the New York State Department of Health, and his staff. The state’s DOH has recently issued a directive to providers of services to people with brain injuries living in the community that, if it stands as is, will likely send back into nursing homes and put others at risk.

The survivors themselves have sued the state to stop the carnage.

It is appropriate that this piece is being written on the birthday of Rosa Parks, an extraordinary woman who refused to give up her seat on a bus in Montgomery Alabama and, with that single act of defiance, sparked the Montgomery Bus Boycott which led to the end of segregation on the buses and brought Dr. Martin Luther King Jr. to national prominence.

Treating any minority, whether it be people with disabilities, people who are Gay or Lesbian, people who are black, Hispanic, Jewish,  Muslim, and so on as if they are less than human, is not only illegal, it is a foolish strategy. Why? Because the bigotry that blinds people to the humanity of others  leads them to underestimate the will and resourcefulness of the very people they are dehumanizing.

We are born with equal rights. They are not something we need to earn or be given as a line item in a budget.

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Brain Injury Survivors Sue New York State

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The Courthouse News Service today reports that “Hundreds of people with traumatic brain injuries may be forced out of their community living facilities and placed in institutions, due to a new provision in the state’s Medicaid program, according to a federal class action.”

The survivors, represented by Robert W. Lukow of Legal Services of Central New York, in Syracuse, say “the state Department of Health is violating the Constitution and the Medicaid Act by abruptly transferring scores of "waiver" participants to different service providers, without adequate notice and without ensuring that services will continue”.  The content of the lawsuit itself is powerful.

This writer has heard from waiver providers and survivors who are reeling from the impact of the DOH directive. Moreover, as one who lives with a brain injury and one who has worked with people with brain injuries for 15 years, I know firsthand how devastating change can be, especially change that has entirely ignored your voice.

One of the through lines of trauma is loss of control. Whether it is a gunshot wound to the head (my experience) or a car accident, death of a loved one, stroke, fall, loss of job or relationship, loss of control is a brutalizing and merciless factor.

New York State has a lot to be proud of by bringing the Home and Community Based Services Medicaid Waiver for brain injury survivors online 1995. However, inflicting directives on those survivors against their will, when it damages their quality of life and more, inflicts yet another trauma by removing all control from the survivors, is nothing at all to be proud of.

The DOH directive inflicting this carnage on the lives of survivors violates the very philosophy DOH claims it stands by in its waiver manual: “The philosophy of the waiver supports the participants right to choose where to live, who to live with, and what goals and activities to choose.” The DOH “philosophy” goes on to say, “The individual is the primary decision maker” and the waiver “leads to personal empowerment, increased independence, greater community inclusion, self-reliance and meaningful productive activities.”

Survivors, their loved ones as well as those providing those services have a right to expect those words to be more than lip service. After all, if the current directive holds, some survivors will be forced back into institutions and others looking to leave institutions will find themselves trapped.

Denying freedom is not what the waiver or this country is about.

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Tough Love My F’n Ass

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Too often tough love  is a term people use to explain away ruthlessness and cruelty. Taking food from your child does not fall into the category of tough love, even when your child is 20 years old and, like most 20 year olds I know, has a penchant for junk food (it ain’t like a lot of us older folks don’t like it too, duh).

And so it was a found myself spitting bullets yesterday when I learn that a father and stepmother moved out of their home leaving their 20-year-old daughter step-daughter behind and, wait for it, the took all the food with them, leaving her with something like an open carton of milk and juice. The reason? They are teaching her a lesson because she likes junk food.

My question for these two it’s-hard-to-believe well-intended nitwits is this. What the fuck were you eating when you were twenty? Were you living on cups of hot purified air and plates piled high with wheat germ? Are you kidding me? You take away the food to teach a lesson? That’s not teaching, that’s damaging. That’s not love, it’s cruelty and, to use a word whose class matches the class of the two I’m aiming at right now, it’s bullshit.

All choices like the one referenced in this piece do is wound, often deeply, the person or persons the so-called tough-love crowd say they are trying to help.

Taking food from your child has nothing to do with tough. It also has nothing to do with love.

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