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*** UPDATED x2 *** Our sorry state

Tuesday, Dec 3, 2019 - Posted by Rich Miller

* Tribune

Aging out of the state’s public special education system, Nick [22, who has been diagnosed with autism] now stays at home, where his mother worries he is becoming more and more isolated and losing what he has learned. She wants to get him into adult programs funded by the state that would continue his training and maybe even set him up in a group home. […]

Nick is among nearly 20,000 disabled adults in Illinois who are on a waiting list to get into adult programs. Many of them come from families who don’t have a way to pay for home care, job coaches or other services.

Most wait an average of seven years before they are selected, despite a court order in 2011 that Illinois shrink the list and do other things to improve how it serves developmentally disabled adults.

One family told the Tribune they signed up their child when he was just 5 and he still did not get a spot when he turned 22 this year.


* IARF President & CEO Josh Evans…

Earlier today the Chicago Tribune published an article that serves as a painful and frustrating reminder to all Illinoisans – particularly those with disabilities and their families - that as a state we have failed to provide for the multi-generational needs of thousands of adults with intellectual/developmental disabilities that are on the state’s waiting list for community-based services and supports in a timely manner. With this publication on International Day of Persons with Disabilities, the Association and its members have a renewed focus in working to address the funding and structural issues that continue to serve as barriers to growing access to services and supports.

While we share the frustrations and concerns of so many individuals and families, recent efforts by the Illinois General Assembly and Governor Pritzker’s administration give the Association confidence that as a state we are now in a better place to begin to chip away at the inadequate funding plaguing our service array, as well as the statutory and regulatory barriers that have limited growth and flexibility in community-based services and supports.

We join organizations and individuals across Illinois in our collective efforts to advance the Fair Tax Constitutional Amendment, as this will not only lower taxes for the significant majority of Illinoisans, but will provide the resources that are necessary to address rate inadequacies, ensure a living wage for frontline staff, and expand the community-based service array and reduce the number of individuals on the waiting list for services.

IARF looks forward to working with Governor Pritzker and his leadership team, the General Assembly, the Arc of Illinois, and stakeholder partners towards eliminating barriers to individuals with intellectual/developmental disabilities accessing community-based services and supports.

*** UPDATE 1 *** From IDHS…

IDHS exists to support individuals with developmental disabilities and their families who are striving for independence, integration and inclusion in our society.

We have made strides in the last year, but far too many individuals with disabilities who “age out” of the school system are waiting for appropriate services because these services were neglected and hollowed out for years. Too many parents are still struggling to help support their adult children with complex needs.

Our administration is working every day, in good faith with individuals, families and stakeholders, to dramatically improve the current system of services and supports. One example is our commitment to revising the rate methodology for developmental disabilities (DD) rates and services to ensure that our rates adequately support our community providers. (Kathy Carmody of the Institute for Public Policy for People with Disabilities and Ronnie Cohn, the court monitor in the Ligas case, were members of the IDHS Rates Oversight Committee that developed recommendations on DD system rate changes.)

The leadership team at IDHS is committed to proving to parents that we honor their devotion to their children and that we will be strong partners with them. Some of our actions to date include:

    * Committing by 2025 to ensuring that no individual remains on the PUNS list 5 years after their 18th birthday.

    * Moving more than 600 individuals off the PUNS list this year.

    * Revising the PUNS list to distinguish individuals planning for services from those actively seeking services. (While there are close to 20,000 individuals on the PUNS, roughly 7,000 are actively seeking services.)

    * Establishing a dedicated email account for inquiries about PUNS status and expected selection dates:

    * Forging a deeper partnership between the Divisions of Developmental Disabilities and the Rehabilitation Services so individuals leaving high school can immediately access vocational and employment supports.

    * Submitting a federal Medicaid waiver amendment to increase wages for front-line workers to account for Illinois’ increased minimum wage, so community-based DD providers can recruit and retain strong teams.

    * Investing unprecedented levels of state support for the community-based system of services serving people with intellectual and developmental disabilities.

Getting this right – eliminating prolonged delays for disability services – requires we marshal and manage significant resources that can support individuals with disabilities to live self-determined lives in their communities.

*** UPDATE 2 *** Kathy Carmody, CEO Institute on Public Policy for People with Disabilities…

Glad you ran the Tribune item from earlier today. As I stated in the article, our current situation is the result of decades-long neglect and under-funding in the I/DD community service delivery system. We are encouraged by the current administration’s commitment to community services and the inclusion of community providers and their representatives in efforts to improve and enhance the community system. The Institute looks forward to continuing to work with the leadership teams at DHS and HFS to find creative and cost-effective solutions to the challenges facing people with disabilities and their families.


  1. - Amalia - Tuesday, Dec 3, 19 @ 2:31 pm:

    I have a friend whose eldest son is over 40 and now in a group living situation. The problems with the State on funding for individuals with these types of needs are many. Please fix it. For those in need, and for those who care for them. It’s truly heartbreaking.

  2. - Perrid - Tuesday, Dec 3, 19 @ 2:32 pm:

    The PUNS list’s existence annoys me every time I’m reminded of its existence. Ugh

  3. - Oswego Willy - Tuesday, Dec 3, 19 @ 2:44 pm:

    === One family told the Tribune they signed up their child when he was just 5 and he still did not get a spot when he turned 22 this year.===

    Those 16-17 years, that’s far too long for a program that one should wait to be enrolled.

    The business here seems to be stalled, by funding and the politics during those times.

    It’s time to be better.

  4. - Anyone Remember - Tuesday, Dec 3, 19 @ 2:45 pm:

    The Hollowing Out of Illinois state government was, and is, about more than employee headcount.

  5. - Three Dimensional Checkers - Tuesday, Dec 3, 19 @ 2:46 pm:

    It’s sad we just waste these people’s lives because they are disabled, and the state does not want to provide enough funding for programs that would allow them to live productively. The Fair Tax will probably not even provide enough funding to do more than widdle away at the problem. It is just more reason to dramatically increase taxes and services in the state.

  6. - education first - Tuesday, Dec 3, 19 @ 2:48 pm:

    My son has ASD and has been on the PUNS list since he was three. We must do better at understanding the depth and breath of developmental disability in IL and PUNS is so NOT a good way to track our DD population. And if you do a deeper dive, you will find that there is no mechanism for the school system to communicate with the health and human services system, and children fall through regularly.

  7. - Earnest - Tuesday, Dec 3, 19 @ 2:54 pm:

    >despite a court order in 2011

    This is in no way a unique story. People can’t get funding for services due to the waiting list. Providers struggle to help those who have funding because the rates are too low to pay direct care staff a decent wage. Our legislators have been abject failures at addressing the issue over decades. The only things that has resulted in more resources for the service system are lawsuits and resultant consent decrees, particularly Ligas.

    Will speaking to legislators help? No, they always say nice things and do nothing. For this fiscal year the They Deserve More coalition made extensive efforts to do outreach. They pushed a bill to tie the DSP wage to the minimum wage so it would keep up. Legislators said nice things, some signed on as sponsors, nothing came of it.

    What if the state had more resources along the lines of passing the Fair Tax? Based on the budgeting process for this fiscal year it won’t help at all. Well into budget, record funding for schools at $350 million. What to do with $25 million in additional state spending? Put it towards resolving the DSP wage crisis they’ve been hearing about all year? No, add to their record school funding and do nothing to help DSPs.

    Unsolicited advice to advocacy groups: put your resources and efforts into lawsuits. Nothing else has ever moved the needle in Illinois.

    Rant off.

  8. - Responsa - Tuesday, Dec 3, 19 @ 2:56 pm:

    This is not a problem with easy answers even if funding for programs was more available. The group homes can be wonderful rewarding opportunities for some disabled adults and can be frightening, disruptive experiences for some that can negatively affect others in the home. Very sad.

  9. - Dave Dahl - Tuesday, Dec 3, 19 @ 3:04 pm:

    Next time you see me at work with my 22-year-old job shadow, think of this story / post.

    More than once, I’ve been asked in front of him, “So what’s he doing now?” and the answer is always “You’re looking at it.”

  10. - SSL - Tuesday, Dec 3, 19 @ 3:21 pm:

    This is beyond frustrating and doesn’t say much about us as a society. The level of services this state provides for the disabled and those suffering from mental health issues is a complete embarrassment. And that says nothing of the disaster that is DCFS.

    Illinois is a high tax burden state, even before the proposed “fair” income tax. And for that high tax burden what do those people that are most at risk get? Zero. It’s on all of us at the end of the day, but the lifetime legislators that led this state down the path of fiscal disaster bear the biggest responsibility. Take a look at the self enriching bipartisan efforts of our legislatures in today’s first post.

    How frustrating for the parents and families who have no way to help their disabled family members experience a more fulfilling, less challenging life.

  11. - JoanP - Tuesday, Dec 3, 19 @ 3:35 pm:

    =Those 16-17 years, that’s far too long for a program that one should wait to be enrolled.=

    Heck, 16-17 months is too long.

    This is all just so wrong.

  12. - Oswego Willy - Tuesday, Dec 3, 19 @ 3:43 pm:

    === Heck, 16-17 months is too long.

    This is all just so wrong.===

    In this, you are right.

  13. - Lester Holt’s Mustache - Tuesday, Dec 3, 19 @ 3:53 pm:

    == Unsolicited advice to advocacy groups: put your resources and efforts into lawsuits. Nothing else has ever moved the needle in Illinois.==

    You pointed out in your own post that the state is already not complying with a court order from 2011, what’s another court order going to do?

    Drastic measure off the top of my head: Lawmakers remove most or all tax breaks/EDGE credits for large employers and sink that money directly into solving this problem. Force their PR staffs (and the Chamber/IPI/various lobbying groups) to defend their threats of leaving the state and laying off workers in order to avoid helping developmentally disabled people.

  14. - Earnest - Tuesday, Dec 3, 19 @ 4:14 pm:

    >You pointed out in your own post that the state is already not complying with a court order from 2011, what’s another court order going to do?

    The Ligas consent decree got agencies paid in a timely manner during the budget impasse. It got hundreds of people moved off the waiting list. It resulted in funding for some admittedly inadequate wage increases for DSPs. These actions were taken due to the state being found out of compliance with the consent decree. What did our legislators do that wasn’t a direct result of legal pressure? I’ll save you some time. Nothing.

  15. - Jake From Elwood - Tuesday, Dec 3, 19 @ 6:07 pm:

    This story hit home. I have previously shared on this site that I am the father of a teenage son with three independent disabilities. He is neither college-bound nor ever likely to live independently. I have already given up on ever receiving a dime of state aid for his behalf. We will apply for the meager federal social security disability benefit when he is eligible and that will be the only financial help my wife and I are planning to receive.
    I am not complaining. This is just fact. I love my boy and he has taught us all so much. Our income is too high to qualify for most of the available state programs, and the programs that are not means-tested have this obscene waiting list. So we will make it work in Illinois as long as we can, and we have family and friends that help when they can. In the event things get too expensive or the road has unexpected twists and turns, we are prepared to move out-of-state in support of our son for the rest of our lives.

  16. - Rasselas - Tuesday, Dec 3, 19 @ 9:19 pm:

    The Pritzker spokespeople say all the right things. The spokespeople for Governors Blagojevich and Quinn probably did, too. Did they actually put more money into this this year?

Sorry, comments for this post are now closed.

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