Failing Bridget: How bureaucracy harms vulnerable Illinoisans

I love being a state representative.  Everything I focus on whether it relates to taxes, education, budget or regulation – in the end – impacts people’s lives.

Then, there are the times when everything you are working on truly impacts specific people you know.  There is a face behind the legislation, a human being whose quality of life lies in the hands of bureaucrats and politicians. In these final few months of my holding office as state representative, I am working on about 12 different specific issues that need tenacious advocacy and a story must be told so that bureaucrats change how the state does business.

This is one of the first stories, as published in the July 30 online edition of the Chicago Tribune:

Failing Bridget: How bureaucracy harms vulnerable Illinoisans

Two years ago, my aunt became the guardian for an adult with disabilities named Bridget. Bridget’s mother, a lifelong friend, had named my aunt her daughter’s guardian and trustee of her estate before she died. While Bridget lives in Illinois, my aunt is in another state. So Bridget’s daily care is provided by a state-licensed provider who converted the family’s home into a Community Integrated Living Arrangement home. Bridget, who has Down syndrome, is employed and active in her community. Keeping Bridget in a familiar place with familiar caregivers and activities was important.

But when her care moved under the control of a CILA operator, Bridget’s longtime caregivers were let go and alarming changes manifested in her physical and mental well-being. To be more directly involved in Bridget’s care, my aunt decided to move her out of Illinois. It was at that point my aunt felt the full force of the bureaucratic state.

Illinois’ system of delivering services to our developmentally disabled is ranked among the worst in the nation. This shameful designation exists for a variety of reasons, one of which is mismanagement.

Care in a state-run CILA costs $48,000 to $92,000 per resident per year. In Bridget’s case, the state pays a CILA operator $81,000 for her care. By contrast, a similar home run through a Wheaton nonprofit program, STARS, operates at a cost of just $32,000 per resident. It is a program in which each participant pools a stipend they receive from a federal waiver program to pay for the home and other services. The stipend is not dependent on a participant being in a state-run or -licensed facility.

The bureaucratic state’s inhumanity
In 2016, in the throes of a budget crisis that was crippling social services, the Illinois Department of Human Services attempted to shut down the STARS home in Wheaton after receiving information that six individuals were housed together instead of the state’s limit of four. STARS invited the state to inspect its facilities. Inspectors issued glowing reports with no violations. Still, DHS wanted to move those being served in the STARS program to state homes, for which there is a current waitlist of over 20,000. Those removed from the STARS home might wait for years for placement in a state home. In the meantime, their families would have had to figure out how to provide care for them, and when a state slot came open, the families would have little say about where. The state often moves our most vulnerable adults miles from their home community. Eight families had to sue in federal court to continue in the STARS program. In negotiating the settlement the judge admonished the state saying “… (STARS) does it cheaper and better than the State of Illinois.”

The bureaucratic state comes for Bridget
When my aunt decided to exercise her rights as legal guardian and move Bridget into a better situation out of state, Illinois’ contract CILA operator sued to end my aunt’s guardianship. The state’s lawyers went so far as to tell my aunt she would be charged with kidnapping if she took her across the state line. The state operator then declared to the court that my aunt — handpicked by Bridget’s own mother to protect her daughter — was an unfit guardian. The court appointed a guardian ad litem for Bridget. My aunt is still fighting to ensure Bridget will get the care she deserves.

Legislative solutions?

In 2018, I filed legislation on behalf of the STARS program that would allow the program to house up to six individuals. DHS opposed the legislation. The bill was shut down in committee by Senate Democrats. Nothing threatens the bureaucratic state more than a new idea that delivers better, cost-effective services with consideration for individual circumstances. Currently, STARS is not allowed to operate at full capacity despite having a waitlist. The current administration could fix this. So could state legislators, by either using general revenues to fund the homes or passing my bill in veto session.

Protecting Bridget
We are all responsible for this. The people we elect have grown state government into a machine that preys on our most vulnerable instead of protecting them. And yet, we keep sending those same lawmakers back to Springfield.

Agencies — beneficiaries of government largesse — work with big government legislators to shut down innovative, thoughtful solutions.

This is the system that has been put in place with our implied consent. It has to change.

We will be judged by how we treated our most vulnerable. Are we going to hold government accountable or look the other way, failing Bridget and those like her across the state?

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