I just got back yesterday from the NCIL annual conference. I did a lot of networking, and made a few new friends. I ran into some old friends, too, like Carol Reynolds, Executive Director of the Disability Center for Independent Living in Denver, CO. I saw Yoshiko Dart, and got to talk with her. I also ran into my buddy, Ollie Cantos yesterday morning, and we had a very good chat.
There were ADAPT folks there as well, a good handfull, in fact. There were folks from Pennsylvania, Illinois, Maryland, Delaware, Kansas, Texas, Washington, DC, Virginia, Wisconsin, New Mexico, New Jersey, and of course, New York. Needless to say, I was quite happy to see ADAPTers in the house!
I’ll admit that at first, I was quite nervous. I felt that the NCIL folks would look down on us ADAPT folks as riff-raff unworthy of being near them, but those feelings went away once I realized that I didn’t really learn anything new. I was quite familiar with many of the topics of the workshops that I attended, so I was able to hold my own. In a way, I was disappointed, having expected more.
There were some interesting things that happened. There was a great Diversity Mixer on Monday, a party put on by members of the Diversity Committee to get folks interested in joining and working with various caucuses within the Committee. I joined the GLBT Caucus, and will work on reaching out to people with disabilities who are GLBT, and making Independent Living Centers safe and welcoming place for the GLBT community.
The highlight of the week was the Senate Finance Committee hearing on Tuesday on long term care, including the CLASS (Community Living Access to Services and Supports) Act, which NCIL supports. However, ADAPT members went to remind them to hold hearings on the Community Choice Act. We did this by wearing our orange Community Choice ADAPT T-shirts. The folks who were testifying were Sue Daniels, whom I have heard of, but never met, Andy Imparato, of AAPD (my former boss), a gentleman from the University of Wyoming, some woman from the SEIU (Service Employees International Union), and a woman who is the parent of a child with significant multiple disabilities. Ellington, her son, who participates in many activities in his community was there. He was quite fascinated with the sign language interpreting. Indeed, several kids were there, including little Ethan, from New Jersey, and Danielle (Cassie’s daughter), from Philadelphia, who turns seven today. Dani and I managed to sneak in a few games of catch during the hearings.
There were well over three hundred people present for the hearing, including over one hundred folks in the overflow room. Many of us were disability advocates and activists. Many ADAPT folks came down for the day to be at the hearing.
The senators present were Sen. Kennedy, from Massachusetts, who chaired the hearing, Sen. Enzi, from Wyoming, Sen. Wacosky (sp?), and Sen. Harkin, from Iowa, a great friend of ADAPT. He recognized ADAPT, and spoke of his love for us, and congratulated Bob Kafka. He spoke at length of some memories of ADAPT and the great importance of the Community Choice Act, and how it must be passed. He spoke of his nephew, Kelly, a veteran, who had a spinal cord injury, but who had all of the supports to live and work in his community. Sen. Harkin spoke of the new and correct scoring of the Community Choice Act, and why, if ten billion dollars could be spent each month in the war in Iraq, why couldn’t two billion dollars a year couldn’t be spent on CCA? He got lots of applause for that statement!
Each of the panelists testified about the need for the CLASS Act. Susan Daniels spoke on how lucky she was to have the supports that she needed all of her life, since contracting polio as a very young child. She spoke of her mother, and her fierce independence as she aged, and how she was able to get supports and remain at home each time she got injured, and up untill she passed away.
Ellington’s mother spoke of his involvement in the community, and her hopes that he would be able to live and work in the community when he becomes an adult. Her greatest fear is that he will wind up in a nursing home.
The woman from the SEIU really made me, and the ADAPT folks angry. She presented a picture of her employer, a handsome, proud gentleman using a a wheelchair, then proceeded to go into intimate details of his care, including bowel and bladder care, and transferes. This woman made it sound as if she was the most important person in this man’s life, rather than his wife and six children. She even started crying–yes, CRYING about how she didn’t make much money, and how the CLASS Act allow her to make better pay because it would pay for all of her hours. That statement was patently untrue because the CLASS Act only allows for up to one hundred dollars per day, and according to her, her employer needed about 15 or more hours of care per day. Overall, she really ticked us off, and the waterworks were unnecesary and inappropriate. Her employer would have been both embarassed and humiliated to know that she told two rooms full of hundreds of strangers, not to mention, a television and Internet audience of millions the extremely intimate details of his personal care.
Andy Imparato did great! He testified on behalf of AAPD (American Association of People with Disabilities), ADAPT, NCIL, and SABE (Self-Advocates Becoming Empowered). Although most of his testimony was on the CLASS Act, the highlight and finale of his testimony was on the need to pass the Community Choice Act. He got a rousing ovation from the audience, the only speaker to do so.
In his final remarks of the hearing, Sen. Harkin encourage folks to call upon Sen. Baucus to schedule a hearing for the Community Choice Act, and we of ADAPT took him up on that. We went to Sen. Baucus’s office and filled it. We eventually were taken to his conference room where we met with two of his staff. Chiefly among other issues, we spoke of our concern that a hearing was committed to, but never scheduled. We were told that there was a hearing schduled for the end of July, but CCA would only be a small part of the hearing. We asked tha a hearing be st up for late September to give people time to raise money to get there, and that the hearing should focus on CCA, or at least feature it. We asked that his staff let us know by the end of the day on Thursday, so that we could announce it at the NCIL banquet. They agreed to do this.
After lunch, the New York group met with Senators Clinton and Schumer’s staff to discuss issues of importance to the disability community. We had meetings scheduled with Rep. Randy Kuhl, Rep. Mike McNulty, Rep. Jim Walsh, and Rep. Tom Reynolds, but due to the length of the hearing, these were rescheduled for later in the day, and our group was divided into two groups, so I wound up in the Clinton/Schumer meeting. What can I say? These meetings are pretty much the same. We all spoke of pressing issues such as CCA (we thanked them for their support, and for co-sponsoring it), housing, transportation, more funding for Independent Living Centers, and other concerns. We really didn’t get any committments out of them.
The week ended with the big NCIL banquet. Senators Harkin, and Patrick Kennedy attended and spoke. Senator harkin, of course, gave kudos to ADAPT and Bob. While the dinner was going on, there was other drama happening. Sen. Baucus’s staff had not called us about the hearing schedule, nor would they return our calls, so we left a message that ADAPT would put out a mass press release stating that Senator Baucus lies to people with disabilities. Well, you know, a funny thing happened–Sen. Baucus’s staff called to say that there would be a hearing on long term care on September 25th! This was announced at the banquet, and ADAPT members did several rounds of FREE OUR PEOPLE!!!
I would like to congratulate all of the folks who won awards for their regions for their advocacy work. I’d especially like to congratulate ADAPT members, Daniese McMullen-Powell of Delaware (Region 1), Beata Karpinska-Prehn, of Syracuse, NY (Region 2), and Amber Smock and FRIDA (Feminist Response In Disability Activism) of Chicago (Region 5).
Overall, it was a decent week, but I’m wiped, and still have lots to tell you about other stuff that happened before this, so I’ll sign off, for now.
