Opinion: Who will care for my brother-in-law Vincent?

SHARE Opinion: Who will care for my brother-in-law Vincent?

My wife’s brother Vincent lives with an intellectual disability called fragile X syndrome. He lives in a group home near our home. The services he needs rely almost entirely on state funding. They are now in limbo because there is no state budget.

The budget standoff is only the latest challenge to a troubled and under-funded disability system. Illinois now ranks 48th in spending on intellectual and developmental disability (IDD) services as a percentage of personal income.


Many IDD services are provided through Medicaid, where too much of our spending is concentrated in institution-based care. We rank 49th — thank goodness for Mississippi — in the proportion of long-term Medicaid IDD service and supports provided to help people live on a human scale within their own homes and communities. Per-capita, Wisconsin spends about three times as much on home and community-based services as we do. Indiana, Michigan, and Ohio spend about twice as much.

Our track record is so poor that key IDD services are now being monitored under court order. It’s surprisingly common for Illinois parents of children diagnosed with serious disabilities to consider commuting from Kenosha or just to move away. I can hardly blame families for considering their exit options.

This summer’s game of political chicken makes a bad situation worse. Some hardball cuts are startling in their petty inhumanity. Group home residents are entitled to a small monthly “allowance” for personal expenses. The word “allowance” itself is rather insulting. Many of Vincent’s peers have outlived their family caregivers or have outlived these relationships. That allowance is all the money they have in the world.

For two decades, that allowance was stuck at $50 per month. Residents of intermediate care facilities received $30. Imagine if that were all you had for an entire month to cover everything from the copayment on some medicine, a dental visit, the occasional tee-shirt or pair of socks, cup of coffee, or trip to McDonald’s. Last year, that allowance was finally raised — all the way to $60. We just got the letter informing us that Illinois is rescinding that small increase. The resulting annual savings for the whole state: about $3 million. That’s one nine-thousandth of the Illinois budget.

On another front, Daily Southtown columnist Phil Kadner recounts layoffs at Good Shepherd Center, the largest respite care provider in the south suburbs where we live. Good Shepherd laid off all of its staff who provide in-home services for people with cerebral palsy, autism, epilepsy, and other complicated conditions. Good Shepherd has actually signed a state contact for fiscal year 2016. Yet without a state budget, no money can flow. Good Shepherd lacks collateral to get a bank loan. It lacks the resources to provide services in hope of later reimbursement. Six-year-old Lily Brown is one of their clients. She can’t talk, is severely mobility-limited, and eats through a feeding tube. She’s just one of the children chronicled in Kadner’s heartbreaking column.

As the budget standoff continues, bills for basic services are not being paid. About 12,000 people live in group-home settings like Vincent’s. As of July 1, the state is only paying for about 1,400 residents whose services are covered under court order. According to a July 23 letter to providers, state officials “fully expect” to retroactively pay for everyone. There is no guarantee regarding how much will be paid or when bills will be paid. Vincent’s service provider has operating reserves to go on a few more months. It’s anyone’s guess what happens after that.

This is a disgrace.

I won’t try to apportion blame. Both parties, every powerful constituency, bear some responsibility for Illinois’ fiscal woes. Caught in the middle are people with disabilities and their families who need basic help. A myriad of nonprofit organizations stand ready to provide that help. It’s time for the governor and the legislature to pass some reasonable temporary budget, and to negotiate their differences within the mechanisms of normal politics, free from budget brinksmanship. Needy families deserve better than a political process that holds essential services hostage. We all do.

Harold Pollack teaches social service administration at the University of Chicago.

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