Substantial and detrimental changes to state-provided in-home or long-term care may be on the way under a new plan proposed by the governor. If it is enacted, nearly 40,000 seniors enrolled in the Community Care Program alone will be forced out of their homes and into nursing home facilities.

To decide whether or not a person is eligible to receive services, such as a home health aide or admission to a nursing home, state agencies use a Determination of Need (DON) score. It’s a tool designed to assess the level and type of need in order to provide the best and most efficient care to older adults and persons with disabilities. 

The governor has proposed raising the threshold citizens would need in order to receive care from state programs. With these changes in place, the minimum score to qualify for assistance would increase from 37 from 29. Many people who rely on these services to live and provide for their families are fearing for the future and the future of their families.

“If the governor’s proposal goes through, I will lose all my attendants’ services, which have been a part of my life, and made my life possible for me,” said Adam Ballard, who relies on the Home Services Program and will lose services under the new plan. “Without these services I will not be able to get to work on time… My work could suffer. My family is not able to provide for me in the same way professional attendants can… I could eventually lose my job, my home and my family.”

Mary Schnell of Springfield, who relies on the adult day care provided by the state to help her take care of her husband suffering from dementia, believes the difficulties of their day-to-day life would be insurmountable without the Community Care program and the services it provides.

“I believe we would lose [services under this new plan]. And I just don’t think I could handle it all alone… The disease gets worse. It doesn’t get better,” said Schnell.

People already receiving home services with scores between 29 and 37 would lose the services they rely on to get from one day to the next. And in most cases, the cost to the state is significantly lower than if the state were to provide nursing home services, often the only alternative.

 “The governor is cutting much more than hypothetical dollars from the budget with this plan,” said State Senator Daniel Biss (D – Evanston), chair of the Human Services Committee, who led a hearing on in-home care on Tuesday. “He is cutting a lifeline for thousands of seniors and disabled Illinoisans who rely on state government to ensure their health and safety. If we raise the threshold for assistance, we lower our standards as a state at a time when we need to find our moral center more than ever. Taking away these services would also increase the cost to the state. This is a lose-lose situation.”

The governor is planning on asking the federal government for a special waiver that would allow Illinois to change Medicaid rules for determination of need. Biss is imploring the governor to first look into the human impact of a possible rule change before making any decision on this issue.

“Instead of blindly grabbing for any means to save dollars and cents, we need to take a hard look at the people we’re casting aside,” said Biss. “These citizens are not a financial inconvenience to be stripped from the books. They are in need of services, and it’s in everyone’s best interest to provide that care in the most effective way possible.”