(photo above: Adam Ballard (left) and Scott Kirschenbaum)
On Tuesday, June 23, the Illinois House Human Services Appropriations Committee held a hearing on the Determination of Need Score. The Determination of Need Score is a measure of eligibility that enables people with disabilities and Seniors to access personal assistant services through the Home Services Program and the Community Care Program. Personal Assistants are a key link to independence for people with disabilities and seniors. In the proposed FY 2016 Budget, Governor Rauner raises the threshold of eligibility for both programs by raising Determination of Need Score (DON) from 29 to 37.
Adam Ballard, a person with a disability who works at Access Living, and Scott Kirschenbaum, a person with disability who used to live in a nursing home, will both lose access to services that support their independence if the DON Score is raised. They both testified at the June 23 Appropriations Hearing.
Below is the testimony from Ballard:
House Human Services Appropriations Hearing
June 23, 2015
ADAM BALLARD’S TESTIMONY
My name is Adam Ballard and I’m Advocacy Manager at Access Living in Chicago. More importantly, I am also a consumer in the State’s Home Services Program.
My attendants arrive early in the morning, before the sun comes up, to assist me in using the washroom, showering, and dressing. They help me brush my teeth, comb my hair, and wash my glasses and face, applying aloe cream to my overly dry skin. Then they help with a quick breakfast and/or cup of coffee so that I can catch a rush-hour train into the city for work before 8. I roll in my wheelchair the 3 blocks to the Metra stop. This all is difficult, but gives me a great deal of freedom, and indeed, my attendant services largely make it possible for me to be gainfully employed, and therefore, a taxpayer. Can you imagine doing your job as a legislator without the supports I have if your mobility was limited in the way mine is?
I also have a family of my own, with two children with disabilities of their own who mean the world to me. I couldn’t have graduated college, started a family or a career without attendant services. Even if I wasn’t working, these services prevent me from being warehoused in a nursing home or other institution that costs the State much more than supporting me in the community does, and that would take me away from my kids.
However, the Governor’s proposed budget would make it harder to stay eligible for Home Services under the proposed Determination of Need score change from 29 to 37. I am now a 31 as of my re-evaluation on June 17. Because of the Governor’s proposed Budget, I am in imminent danger of losing these vital services. This would be devastating to me personally, as well as the nearly 10,000 other Home Services consumers who would lose their services under this proposal. In order to avoid losing my job and maybe even returning to a nursing home, I’d have to rely on family and friends already stretched thin with other responsibilities, including help raise my two disabled children, to provide me the assistance I need to bathe, dress, use the toilet, and be ready for my day. That’s not sustainable, and it would represent a huge loss in quality of life for me as well as my loved ones. Of course, raising the DON for these home-based programs also means raising it for nursing homes, so I wouldn’t be eligible for nursing home placement either. Instead, I’d watch my family fall apart, be at risk of losing my job and home, and then after having my health deteriorate, I could possibly eventually qualify for services or institutional placement again. I just want to continue to get the support I need to work, and to stay in my home with my family. Isn’t that what anyone in my position would want? I can’t have my hours cut any further, either. I need support in the evenings and on weekends as well, but I have to be careful how I allocate my attendants’ hours to be sure I have coverage on weekday mornings, when my need is greatest.
I’ve already spent time in a nursing home due to rehabilitating two broken knees nearly seven years ago. My youngest child was a newborn, my eldest just a toddler. And they had to come visit daddy in a nursing home. They can’t remember that time, but I’ll never forget. I was only able to leave that place, which stripped me of dignity and self-determination, only because I had personal attendant services at my disposal. Removing 10,000 of us from this vital support will cost so much more down the road, as taxpayers like me become aid recipients and homeless and worse, and the nursing home population of non-elderly people w disabilities in Illinois again begins to swell, to our shame.
We’ve been on the right track in our state recently when it comes to getting and keeping people out of institutions. Let’s not throw it all away on incredibly shortsighted short-term savings. We need a long-term permanent revenue solution to balance our budget, not cut after cut after cut. I need your help to make it clear that raising the DON is not an acceptable solution. I just want to keep working, and raising and supporting and enjoying time with my family. Thank you.