Thursday, August 2, 2018

Commentary: 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?

Jeanne Ives is a Republican state representative from Wheaton.

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4 comments:

Vinnie said...

It's every state. Bureaucracy and red tape is overwhelming. Sometimes it necessary though because people take advantage of the system.

StandUp said...

Please keep writing these articles. People need to know.

Anonymous said...

For me my world went upside down two weeks into my spouses filing for divorce. Today I found several fictious police reports. At this time my lawyer said always go to the police if my spouse comes home without my knowledge. I did but this is where Dennis's lawyer stepped in. I gave my report and left. However two days later Dennis's lawyer calls mine. Give her a guardian, says my lawyer, and with in hours Dennis was in court. Delusional and persicutory against him. Hours later the police came and took me away. Never was I told why and here I vanished for 19 days not knowing why. I called my lawyer and he said he would step in. Called and letter to the police. Domestic Criminal Trespassing Law they didn't follow. He failed to say where I was. Then he called the nurse. He was just my divorce lawyer. That same day he says to give me a Power of Attorney. Guardian he was after too. Over SEDATED me they tried, but I faked taking my medication. Days in a lawyer comes to me. There will be a meeting if you stay or go. I wanted to go. No if I did the Judge can or will put you in for 90 days, and you stay. I was a prisoner of the state, and never told why. How can you get out or even go to court if you have to go against the person who locked you down. You can't. I had a major big time seizure, and told non scene. My gosh I have epilepsy and even my meds weren't given correctly. Also learned that I should have been given an advocate right up front, but when it was mentioned I was told I was being discharged so no advocate did you need. Another week I stayed and again never told why. Normal they do this to you. I vanished. Day 18 I got an advocate and day 19 I was out. Little did I know there was a court date on me the next day. My lawyer on record told them he had a guardian and power of attorney for me. Out though and the next week the sheriff comes to my door. Dennis was taking me to court. Guardian, needed In case of insanity. More to say on my case.
Today I found and documented my lawyer was his. When I was given money to go to another lawyer he was still was going after giving me a health care power of attorney right as I left. I lost in the divorce. My lawyer to me stole over $20,000 from me. How much did he get from Dennis?
Time went by, but Dennis didnt stop. Divorce was over but he still enjoys taking me out.
To get more of my papers I went to the judge, and more immediate papers were given. Also told I can file my complaint to the State Bar. I did for what I had. Legal oh yes. You file, and your lawyer has the last say. You can't counter him, and he walked scott free. I did get a guardian ad litem, but almost went to guardian. Lawyers love games and money as my spouse loved too play. I found once given a guardian my lawyer knew I could have vanished and put anywhere into hiding and never scene again. There are so many out there like me that need are help.
Oh days out Dennis and my lawyer were taking me to court. In case of insanity.
Please it can happen to you.

NASGA said...

Anonymous, thank you for sharing your horrible story. We have many people who have come to us because they were divorcing and had assets and the spouse used guardianship to make sure the assets were not divvied up honestly. You are certainly not alone.

Please consider joining NASGA. We understand what you've been through and are still going through. And we're working hard to fix it. https://stopguardianabuse.org/join-nasga/