Testimony from Amber George, on behalf of the eight other Southern Tier Independence Center (STIC) Advocates for the Senate Finance Committee Hearing, "Strategies to Improve Access to Medicaid Home and Community Based Services". April 7th, 2004, Washington DC. As we rolled in to Washington DC on April 7th, 2004, the beautiful hints of dawn fell down upon the waking streets and welcomed us. The enigma of Washington was awe-inspiring for those who had never been and even more so for those who had forgotten the magic of the city. As we rode through the city on our advocacy bus, the large pillars of democracy stood in testament to the power that each individual person has to stand up, make change and obtain civil rights. These first glimpses of the city were to resonate in my mind all day, as its enigmatic qualities transpired to the Senate Finance Committee Hearing, through the actions of both the Senators and the Advocates. Our group of eight advocates from the Southern Tier Independence Center were excited to be a part of this ADAPT action. This hearing and the issues at stake are vital to STIC's work in the Community Integration Program as well as in our other programs and services. Being both a part of this team and an advocate, this was something that we have been anticipating for a long time. For those of us who were not completely aware of MiCASSA's significance and the importance of this hearing, we quickly learned as we stood in the Finance Committee hallway waiting to enter the hearing room. As the moments grew closer to the start time of 10am, our numbers in the hall began to swell. We watched as the staff hurriedly prepared the room. Some realized the staff were not considering the space wasted by the large tables and the opportunity removing them would present for more accessible spaces. Once the word got around the hallway, advocates retaliated by chanting "we want access". The chant continued until Senator Tom Harkin came, assessed the situation, and then quickly made the staff remove the tables and accommodate our desires! Our group was unable to get into the actual hearing room, so we went to the overflow room and found our way to the front where the television was stationed. As we sat and waited for the hearing to begin, our advocates noticed the grand scale of the room and wondered why the actual hearing was not held in this room. The room instantly multiplied in the number of advocates pouring in to get settled for the monumental event. The TV flickered on and we saw Senator Chuck Grassley, the Chair of the Senate Finance Committee flash before the screen. He began with positive remarks concerning the importance of this hearing and the need for actual reform in the Medicaid institutional bias. After he gave his keenly crafted speech, the room came alive with the opening statements of Senator Harkin. He spoke passionately for the passage of MiCASSA and Money Follows the Person. We were amazed with his articulation of our issues and his understanding of what is happening to people with disabilities and seniors. It seemed as if he had been sitting in on all the meetings the Community Integration Team has had in months past, discussing the biases our people face and the hopelessness they experience with discrimination squarely in their face. This surreal experience was just one more indicator that we are a part of a much larger force and that we are not alone in our struggles. This gave us an optimism that was very difficult to describe in words. Throughout the testimony of Senator Harkin, various advocates yelled out in agreement with the words he spoke. The energy in the room seemed to take on a life of its own. Directly after Senator Harkin finished his speech we noticed on the screen that he was exiting the hearing room. A few moments later he appeared in our room, with people clapping and cheering as he made his way to the front of the room. He spoke briefly, while trying to not interrupt the next speaker Dennis Smith, the acting director of the Center for Medicare and Medicaid Services. With his hands in the air and with a loud resonating voice, Senator Harkin encouraged us to not give up and not give in. He sat and listened to a good portion of the rest of the hearing beside us, nodding his head to what some nearby advocates whispered to him. After the first panel of national politicians, a selected bunch of individuals, advocates and providers gave testimony. Ray Gerke gave testimony in which he explained his personal, lifelong experiences with institutionalization and discrimination. His testimony was sad but also joyous because he fought to get himself out of the institution, however he remains fearful that without proper legislative action he may return someday. As I heard his testimony I was reminded of others I had heard, and I wondered what others (such as the Senators) were thinking as he tearfully sat before them. I wondered if they felt affected by this man in the same way that I do in every story I hear, by every person I meet who has had similar experiences. The room livened again as Bruce Darling appeared upon the screen as the next advocate to speak in front of the Senate Committee. I noticed he was wearing the same exact sticker promoting ADAPT and MiCASSA that everyone else in the room was wearing. These round, reddish color stickers had been passed out earlier in the morning to everyone who supported the events of the day. With this awareness, I realized that the whole overflow room of some 200-300 advocates were up on the hearing stand with him, as he spoke, he spoke for them and with them. He basically went over much of the same logistics that Senator Harkin said, however he added to them with personal vigor that only Bruce or another grassroots advocate could do. He provided the administrators with the Real Voices of those who have been affected and continue to be so by the institutional bias. His solutions were Real Choices. After almost every ADAPT sentence the heart beat of the crowd cheered and clapped with pure excitement! Most of us didn't want it to end! After his speech, our group was so inspired and ecstatic we didn't want the momentum to die so we exited the room for fresh air and talk about what had just happened. We all agreed it was a big event and a progressive start for more powerful events to come. It's not every day that one can recognize when they are a part of something that is tremendous and will have long-lasting effects such as this hearing. But, we knew. We also recognized that there is still a lot more work to be done. This trip provided some of STIC's staff and consumers the opportunity to get to know each other a little more and experience the event in a way that makes it much more real and important. We also had the opportunity to meet more people from ADAPT and all over the United States. It gave us a glimpse into what has been done and what more we all can do. Each of us can play a part to rid the nation of the institutional bias that continues to negatively affect many people with or without disabilities. Everyone who went aged that they'd most likely do it again! Amber George Systems Advocate Community Integration Advocate Southern Tier Independence Center 24 Prospect Avenue Binghamton, NY 13901