The Association of University Centers on Disabilities (AUCD) is working with other disability organizations to ensure that long-term services and supports are included in health care reform. One important bill they are advocating for is the Community Choice Act (CCA) that would offer choice and independence for people with disabilities. This legislation, sponsored by Senator Tom Harkins (D-IA), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities. It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.
“The legislation sends a message to the rest of Congress and to America: We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act (ADA). “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need. It is wrong – and this legislation changes it.
Senator Harkin’s office has asked for assistance. They need personal stories that can help make the case of why long-term services and the Community Choice Act should be included in health care reform. They especially would like stories from the developmental disabilities community. In writing your story, you may want to consider the following questions:
• Are you caring for a family member or family members who need long-term services?
• Are you an aging caregiver concerned about future services?
• Do you have out-of-pocket expenses for long-term services that are difficult for your family?
• Has providing care impacted your employment?
• Are you on a waiting list for Medicaid home and community-based long-term services?
• How long have you been waiting? How long is the waiting list?
• Have you ever had to move or become improvished to get the long-term services you need?
• Have you only had a choice of nursing home or institutional placement?
There is no set format for the stories, but short, one-page stories are most effective with lots of details included. Be sure to include your name and what state you live in. Your story should make the case of why long-term services and the CCA should be part of health care reform.
Health care reform is moving very quickly, so the stories are needed as soon as possible. You can send them to Joe Caldwell at jcaldwell@aucd.org, or mail them to: Joe Caldwell, Association of University Centers on Disabilities, 1010 Wayne Avenue, Suite 920, Silver Spring, MD 20910.
April 11th, 2010 at 11:28 pm
The blog is quite noteworthy, as it mentions plenty of aspects for how organizations could help elders with the homely environment.
I congratulate the author.
July 10th, 2009 at 2:06 pm
Peggy,
That is a very moving and powerful story that I think legislators need to hear. I think that any parent who has a child with a disability can relate to your struggles and has dealt with some of the same issues wherever they might live. I applaud you for doing everything possible to give your children the healthcare that they need. It is the voices of people like you who will make a difference in the long run if there is going to be a change in the healthcare system. Good luck!
July 10th, 2009 at 10:17 am
I am the mother of a 13 yr old quadrapelegic with seisure disorder and cerebral palsy. My son’s disability and trying to obtain goverment services has certainly affected our lives. He waited on a list for approx. 9 yrs to recieve medicaid benifits on a spendown program called “class”. It is my understanding that the state of TX was sued at one point which was when he moved up the list to recieve services. We moved to TX when he was two yrs old and did not have any insurance. He began having focal siesures, which we knew there were a problem but didnt know exactly what was to come. We searched for help and had found the Blue bird clinic at Tx Childrens hospital but were not able to to see a Dr. before he had a seisure that landed him in the hospital. Paramedics had pump him with so much phenabarbitol to get him to stop seizing that 3 days later they were telling me they did not know if he would wake up.Thank God he did and recovered. I feel thousands of dollars could have been avoided had services been made available. I was not able to leave my son to work until my son was on the Class Program. There should be more input by the familes who care for the disabled. I now work for the public school system in special education transportation. I make $9.61 an hour and the class program pays a care giver approx. the same to come into my home and care for my son as I am not allowed to care for my own son as his caregiver until he is 18 yrs old. Just recently I saw on the news in Corpus Christy TX where the so-called cargivers of a state run center were making the special needs residents fight and taking pictures of it on their cell phones! Yes I believe that people are better being treated with respect no matter what their disability is. We have lived in a rental home now since coming to TX and dont see any way to own our own home. I try my hardest to keep a roof over my childrens’ heads and feed them. You see we are the ones who live just above the dirt road who dont recieve government housing and foodstamps. I spend much of my time filling out paperwork to quailfy for medical services for my kids one is on medicaid and the other on chip. If you try to increase your income you dont qualify so why try, right? I see many families every day on my job who deal with the same issues; different disabilities, different age groups but the same issues. Please see that we are all human and really all that needs to be done to see this is for everyone to envision themselves as the disabled person.What would you want if it was you? or if it was your loved one.
May 7th, 2009 at 10:16 am
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