99 Arrested as ADAPT Blocks Independence and Constitution Avenues on the Hill, then Crawls Up the Capitol Steps
April 28, 2009
Washington, D.C. — ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took the fight to include long-term services in Health Care Reform up to Capitol Hill today. On Monday, Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress.
“I guess what happened at the White House kind of got us wondering who is leading the country, the President or Congress,” said Bob Kafka, ADAPT Organizer from Austin, Texas. “Sad to say but President Obama gets a D on disability rights after his first hundred days. Throughout his campaign and currently on his website he promises 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. Many of us who voted for him feel angry and betrayed that he isn’t keeping his promise.”
The Community Choice Act (CCA) (S. 683, HB1670), introduced in March 2009 by Sen. Tom Harkin (IA) and Rep. Danny Davis (IL), would remove what is known as the ‘institutional bias’ in Medicaid. B Currently, Medicaid pays for older and disabled people to go to nursing homes and institutions, but won’t pay for the same assistance, generally at a lower cost, in a person’s own home. Many states have limited or no home and community based services with lists that keep people waiting for years in institutions and nursing homes before they have any hope of getting services. Some wait so long they die before their name reaches the top of the list.
“It’s no surprise we decided to have a presence on Capitol Hill today,” said Mark Johnson, ADAPT Organizer from Atlanta, Georgia. “We blocked streets to make it visibly clear that we aren’t going awayb& and we won’t go away until CCA passes or is included in Health Care Reform. Research has shown that people who live in the community are healthier and have fewer secondary conditions. It’s fiscally irresponsible to increase health care costs by not insuring that people have the choice to receive services and supports in their own homes. And it’s bad policy to put all the dollars only into front-end health care, once again denying people with disabilities their civil rights and forcing them to continually be the last people served.”
After police arrested 99 people from both the House and Senate sides of the Capitol, the remaining 400 ADAPT members went to the Capitol, many spilling out of their wheelchairs and crawling up the Capitol steps to hold an impromptu CCA rally, reminiscent of the famous stair crawl on the day the ADA was passed in 1990.
ADAPT winds up its week in Washington on Wednesday by holding a joint rally with SEIU, the fastest growing, largest home care union in the country, with a membership of over 420,000. Sen. Harkin will speak at the rally, as will an ADAPT member and his SEIU attendant. People with disabilities and seniors want workers who are paid a living wage, who have health care benefits, and time off. Supporting a fairly compensated workforce reduces turnover, increases reliability and insures a better trained attendant workforce for those who need assistance in their daily lives.
“After the rally, we will go in teams to visit every member of Congress, asking them to co-sponsor CCA and include long-term services in Health care reform,” said Barb Toomer, ADAPT Organizer from Salt Lake City, Utah. “There will be well over 1000 people visiting Congress on Wednesday from a number of different disability and provider groups, all with the same message: pass CCA and include long-term services.”
FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org//
I used to work for United Cerebral Palsy of Mercer County (NJ) as the Program Coordinator for the RespiteOptions program. My job was both cool and frustrating as heck. I had a staff of respite workers that went to the homes of people with disabilities and stayed with them so the caregivers could have time off. While there, the respite workers did everything from helping with homework to bathing. This gave the caregivers (usually exhausted parents) time to get away and do their own thing. Some caregivers did the grocery shopping or had dinner out or even just took a long nap. For the most part, this was only for 40 hours a month but for most of the families, it was what they needed.
We were funded partially through the United Way. When the program first started, they (UCP Mercer) thought that with the respite care, a family would eventually no longer need the help. It turned out to be the opposite. And the United Way wanted to see more families being served but with the same amount of funding. One year, a young mother of a daughter with severe disabilities did some research. The state of NJ did not have an institution with the level of staffing her daughter would need. Instead, she would have to go to (I think) Indiana. And NJ would have to foot the bill. The cost of a single year for this one pre-teen girl? Over $300,000. For one child. Our yearly budget to serve 40-50 families a month? $100,000. This mother admitted that without that scant 40 hrs a month, she would not have the energy to keep her daughter at home. United Way got the point and continued to fund the program. Remember, this was way back in ’88 or ’89. Prices have significantly increased since then.
It has been proven over and over that keeping someone at home is much cheaper than paying for institutional care. When in their own home (or even a small group home) the person is happier, healthier, and either improves or maintains their level of abilities. My friend Jean has managed to keep her son Sam out of an institution. She’s had to prove how much better he is at home in order to keep his nurses. In an institution, Sam would not have advanced as far as he has since his brain injury 3 yrs ago. The nurses are much much cheaper than the institution would be yet she has to fight and appeal on a regular basis.
Medicaid and Medicare could save themselves a chunk of change by allowing folks to stay at home. Institutionalized care is a model that does not work for all people. When someone in their 30s has to live in a nursing home because Medicare/Medicaid won’t pay for home nursing, that is wrong on so many levels.