Tami and David
I became disabled in 1991, and have relied on Illinois’ Home Services Program for 27 years to help me live an independent life. The program provides me with an assistant, Tami, who gives lifesaving care and allows me to be an active member of my community rather than shut up in a nursing home. I’ve never had a problem with the program before Bruce Rauner, but now the service I rely on to survive is under threat.
I have quadriplegia and I suffer from autonomic dysreflexia, a very dangerous condition that requires my caretaker have specialized training to identify and trouble shoot life threatening symptoms. Tami has received that training, and she’s provided me essential care for 27 years, but Rauner’s new overtime home care rules are severely limiting the amount of time she can spend working. Without her doing overtime, I’ll have to rely on inexperienced providers who don’t understand my condition and don’t realize the unique dangers I face every day. We’re fighting for an exemption from the rule in court, but the stress over this situation is causing my health to deteriorate. I’m like a prisoner in my own body— I need to have a caretaker I can rely on, but Bruce Rauner doesn’t seem to think so.
JB is someone who understands the critical role home care plays in my life. He’ll be an advocate for people like me, and he’ll help us continue to be members of our communities. Instead of using the home care as leverage to strong arm his opponents, I know JB will bring people together to move our state forward and give me the tools I need to survive.
Through Illinois’ Home Services Program, I have worked as David's home care worker for nearly three decades. David has a dangerous condition called autonomic dysreflexia, and I'm specially trained to care for him. If I'm not around to help him, he doesn't get the care that he needs, and his health suffers. David and I maintain a system of care that works for him and his condition.
We have experienced changes to the program over the years, but it’s usually been for the better. Since Rauner took office and signed off on a policy that caps workers like me to 45 hours a week, there has been nothing but trouble and roadblocks. Under the new policy, I can't give David the care he’s come to rely on. He’s tried a number of times to find others with the training necessary to take care of him, but without success. And now after working overtime to get him the care he needs, the administration is threatening to suspend me for violating their rule.
I'm not sure what's next, but it's clear that Rauner is using this failed policy to take away choice and independence from people like David. Rauner doesn't care about people with disabilities and their caregivers. I support JB because he believes that people with disabilities deserve to live independent lives in their communities. We need a governor who will preserve choice and include people with disabilities in discussions about policies that affect them. I support JB because he will empower caregivers to provide high-quality care so that people like David can live with dignity.