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August 12, 2018

IPADD (Illinois Parents of Adults with Developmental Disabilities) calls for Illinois to immediately revise its Medicaid eligibility system.


Illinois advocates can no longer place trust in the state to determine Medicaid eligibility. We ask for the state of Illinois to become the thirty-fourth state in the nation to allow the Social Security Administration to determine Medicaid eligibility for its citizens.

June 7, 2018

Excellent summary of issues surrounding the Medicaid auto-rejects many  have experienced, condensed into a detailed (and long) letter sent to Director Norwood and Secretary Dimas today. IPADDUnite was happy to sign on in support. Feel free to share with your state legislators.

Testimony Submitted to the
Joint House-Senate Human Services Committee

On Abuse and Neglect Taking Place at Group Homes
For Individuals with Developmental Disabilities

Laurie Jerue and Ellen Garber Bronfeld,
Illinois Parents of Adults with Developmental Disabilities Unite
Chicago, Illinois
December 13, 2016

Chairpersons Gabel, Biss, and members of the House and Senate Human Services Committees. Thank you for convening this hearing to explore abuse and neglect taking place at group homes for individuals with developmental disabilities.

Our names are Laurie Jerue and Ellen Garber Bronfeld, both mothers of high-need adults with developmental disabilities who have autism. Ten years ago, we founded the online information, support, and advocacy group Illinois Parents of Adults with Developmental Disabilities Unite (IPADDUnite), at a time when few adults with disabilities were being funded for services unless they fell into the Crisis category of need. IPADDUnite has grown to nearly 1,200 families statewide, most of whom are on the PUNS waiting list for services, some who were selected for CILA services under the Ligas Consent Decree.

Our priority is robust and immediate investment into building community capacity, because that’s where our children grow up, go to school, forge relationships, work, volunteer, and plan their futures.

The recent Chicago Tribune series shines a light on some tragic and abhorrent conditions facing our vulnerable loved ones in select community group homes – risks our families have known about for decades - and we are anxious to hear from the state about both reactive and proactive strategies to address these situations and prevent others from happening. Questions:

1) The state reports hiring more OIG staff and cleaning up questionable oversight practices such as the ‘buddy investigator’ system. These are good measures to help the state monitor and respond quickly to reports of abuse or neglect. Is a strong independent entity such as Equip for Equality, with authority to monitor OIG and the state, also part of the plan?

2) We understand that one agency, DSI, was shut down in response to the Trib series. Have their 45 individuals been safely relocated to other housing in their communities? Were they adequately supported through this sudden transition? Did new incident reports need to be filed in connection to their retrieval and moves? Does DHS have a thorough plan and procedure for future emergency shutdowns, to reduce stress and ensure safety and well-being of residents in these situations?

What measures can be put in place to prevent abuse and neglect from happening in the future? IPADDUnite subscribes to the adage “follow the money” and what appear to be significant salary, benefits and career path disparities between front-line workers in State Operated Developmental Centers (SODCs) and their counterparts in community CILA homes.

We strongly disagree with DHS Chief of Staff Fred Flather’s recent testimony October 17th before the Senate Human Services Committee. Mr. Flather stated that community DSP jobs are “a little bit different” from other jobs, saying “some individuals are called to this work and would almost do it no matter what you paid them.” He argued that since no one is sure what the “magic number” is to make it a little bit easier to recruit and retain good DSPs in the community, it is legitimate to wait and negotiate rates during the regular budget process, whenever that happens.

Let us be clear: The magic number is NOT $10.71/hour. To insinuate otherwise shows callous disregard to our families, loved ones, and to the genuine crisis we experience in community CILA homes with 30% turnover, extreme staff fatigue, low morale, and burnout. Shame on the administration for taking such a cavalier attitude towards hard-working DSPs whose fundamental expectation is a living wage for themselves and their families. Questions:

3) As a state, how do we justify maintaining two separate but equal sets of jobs with vastly different salaries, training, supervision levels, career paths, benefits, and pensions? Mental Health Technicians in SODCs do essentially the same work as Direct Support Professionals in community settings, yet they are paid a much higher wage.

Our review of posted state wages on the Springfield Journal Register website shows Mental Health Techs start at around $17/hour, with incremental wage increases based on satisfactory completion of training and length of service, up to around $24/hour plus state health insurance and pensions.

DSPs doing similar work in community CILAs have one single rate of $10.71/hour. No career paths, no salary increases unless the community provider, families, and employees privately fundraise enough to cover wage increases on top of managing other costs of doing business.

Do we know that wage disparities aren’t causing unintended patterns of discrimination between the SODC Mental Health Tech and community DSP workforces? Does the state collect EEOC data from its licensed community providers? If not, we suggest this may justify an immediate review and course correction if the data supports it.

4) To the administration position that the state is broke and any rate adjustment consideration must wait to be negotiated as part of the regular budget process – we ask, what about the Exelon bailout? Just last week, the legislature and Governor found billions of dollars to preserve 1,500 jobs at two nuclear power plants at great taxpayer expense. Seven Democrats and three Republicans who are members of this joint committee voted "yea" on SB2814, and the Governor signed the bill into law. This bailout was obviously a bipartisan effort. We challenge the parties to work together in a bipartisan fashion for solutions to the human services crisis at hand.

In summary, we do want to thank members of the House Human Services Committee who voted to override Governor’s veto of the DSP Wage bill (HB5931). Even though the override attempt failed, we are grateful to representatives Gabel, Wallace, Ammons, Andrade, Cassidy, Fine, Flowers, and Soto for your support.

We know this is not a new problem nor one that the current administration fully owns. Year after year, we are told to be patient by Governors and legislatures, to wait until you fix the intractable pension mess which was not of our making. But enough is enough. It’s unconscionable that in the chess game of Illinois politics, our children remain the pawns after decades of indifference. The time to investigate and correct problems in community CILAs is now.

Thank you.

Other News





August 24, 2020 IPADDUnite released their 2020 Community Living Report, which evaluates every member of the Illinois General Assembly, and the Governor based on their support or opposition to ten new state laws. This scorecard is a tool intended for use by Illinois citizens and organizations concerned about quality community living for persons with disabilities.


20th anniversary of Olmstead
Get ready to celebrate as we approach the 20th anniversary of Olmstead in the year 2019. Please view the following PDF files and let's get to work together!



History of Olmstead

Bill HB5931 Illinois


Senate and House Voting and Addresses for those voting no the first time around



Governor Rauner Proclaims DSP Jobs “Vital”, Then Two Days Later Vetoes Wage Bill

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