Following is a response to my recent entry, “ADAPT is Crazy,” from ADAPT organizer — and friend of mine — Marsha Katz. It makes interesting points, and so I thought I should share it.

When Josie Byzek writes about ADAPT, I'm never sure if she’s giving ADAPT a “left-handed compliment,” or what. That said, I hope that people with psychiatric disabilities are not offended by her use of the "C" word...especially since it's hard to tell whether she uses that word as a positive descriptor or a dismissive one.

In any event, Josie’s new “Tremors of Intent” compels me to write to correct a few errors.

First, ADAPT had been planning the Atlanta action for a year. It had absolutely NO connection to the Baucus bill or health care reform. We were asked by Georgia advocates and activists over a year ago to support their considerable ongoing efforts to get the state to actually comply with the ADA, now almost 20 years old, and the U.S. Supreme Court decision in Olmstead, over ten years old. Atlanta was in the works before last year's election and before we knew exactly what the spring DC agenda would be.

Secondly, as far as President Obama's "promise," what he actually promised was to “… support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution…” It was no great leap for anyone to believe that that promise would naturally find major elements contained in the CCA folded into health care reform, or at least suggested to Congress and then endorsed by the President.

It’s astonishing that, other than ADAPT’s constant reminders and Sen. Kennedy’s CLASS Act/plan, there has been such a lack of conversation on long-term services and supports in all of the health care reform debate. Especially with us baby-boomers entering our prime disability years and beginning to draw Social Security. It is well known that long-term services and supports are the third leg of the three-legged stool of retirement security for older Americans, along with retirement income and general health care. Long-term services and supports are most assuredly the elephant in the health care reform living room.

ADAPT continues to gain co-sponsors for CCA, and our work on its passage hasn’t stopped. In the meantime, partly as a result or our actions in D.C. last April and since, elements of the CCA are now actually included in the Senate health reform bill. They were put there as a state option by Sen. Baucus himself, as part of the Chairman’s Mark, and called the Community First Choice Option. So, for the first time since the CCA (albeit under another name) was first introduced by Newt Gingrich in 1997, elements of it are appearing in law, and research is being mandated that will only help move things forward. In addition, Money Follows the Person (MFP, totally credited to ADAPT by former CMS Director Mark McClellan) is continued with a shortening of the time people have to be in a nursing facility before using MFP to move into the community.

Lastly, CNN… Dr. Gupta may be a very nice person - he certainly seems so to me. However, when he mistakenly explained the CCA as legislation about hospital accessibility, he was blatantly wrong. Many of us wrote to him and CNN to correct his error, explain the freedom and civil rights nature of the CCA, ask for a public correction, and formally requesting to meet when ADAPT was in Atlanta. We were met with total silence….not even so much as an acknowledgement of the error and a promise to correct it publicly. The CCA is too important to the freedom of people with disabilities and older persons to let be dismissed in the way it was.

ADAPT had no way to know until just before we hit CNN that the nice Dr. Gupta would be off making money on a book tour. Regardless, since CNN employs Dr. Gupta, it shares responsibility for accuracy in reporting, so Dr. Gupta’s presence would have been nice, but it wasn’t a necessary ingredient to bringing the issue to light. Along with CNN folks now working with ADAPT, an added plus to our protest is that we have formally put the media and press on notice that we in the disability community will no longer be ignored. We are a huge minority group in this country, and are central to the health care reform and financing discussions. We demand to be included at the table, and we will settle for nothing less than both our freedom, and “Nothing About Us Without Us.”

Sincerely,

Marsha Katz