Autonomic dysflexia.

You’ve probably never heard of it, but I live with it every day. AD is a very dangerous condition that stems from a spinal cord injury. What it means is that my blood pressure can drop very low or rise very quickly without me even noticing. If swift action is not taken when I’m having an episode, it could translate to very serious consequences like a stroke.

Despite my condition, I’ve lived an independent life the last 27 years in my community thanks to the Illinois Department of Human Services’ Home Services Program (HSP), which provides me with a home care worker, or personal assistant.

Consumers who receive services through the HSP are assessed based on our care needs and awarded a number of service hours each month, funded through federal and state Medicaid dollars.

It’s a win-win for everyone – I get to live in my community and avoid the isolation of nursing home care, approximately 26,000 jobs are created for personal assistants who provide high-quality care, and taxpayers see dramatic savings over the cost of nursing home care.

I’ve had the same primary caregiver for nearly three decades now, Tami. She is my lifeline in more ways than one. She provides the type of services that people in her line of work often do – she gets me up and dressed each day, prepares my meals, does my laundry, and bathes me. But, my condition has required that Tami play an even bigger role than most – she’s specially trained to identify symptoms and signs that my blood pressure may be destabilized, knows exactly how to trouble shoot when it happens, and knows when it’s time to call an ambulance for additional help.

This system of care that I’ve maintained for 27 years is successful. It works for me and for my condition.

Governor Bruce Rauner and DHS say it doesn’t work for them anymore though.

On August 1, 2017, the governor implemented a new policy that caps the number of hours that a personal assistant can work each week at 45 hours. For someone like me who has high care needs, this policy mandates that I must recruit, hire, and train additional caregivers to cover my hours that go above 45 each week. There simply are not people in my community with the specialized training necessary who are willing to come work a few hours every week for only $13 per hour. Beyond this fact, consumer choice has always been a bedrock principle of the Home Services Program – meaning that the recipients of services are human beings who should have a say over who is coming into their homes to provide the intimate care required. This policy takes away my choice because I already chose Tami.

Since we’ve been unable to recruit additional caregivers, Tami has received numerous disciplinary occurrences under this severe policy, with the latest threatening her with suspension. We continue to fight these occurrences and the denial of an exception for me under the policy.

On July 10, the Illinois Labor Relations Board will release a decision on this policy, either siding with an administrative law judge that already ruled the policy was illegally implemented, or siding with Governor Rauner and allowing it to remain in place.

It remains to be seen what the ILRB will do, but I urge Governor Rauner to stop this madness once and for all no matter the outcome. There are thousands of Illinoisans with disabilities struggling to maintain our independence and dignity under your strict policy and it doesn’t have to be this way. 

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David Spurney is a Staunton, Illinois, resident who has utilized home care services through the DHS Home Services Program for 27 years.