Up first: Michael Berens released another article today in the Chicago Tribune “Reforms Promised but group homes still suffering from problems“.  The Arc of Illinois plans to respond with a letter to the editor about this article as we see it as incredibly bias and advocating for a return to state institutions.  It also completely missed the point once again about needing additional investment in the home and community based system.  If we had $200,000 per person to spend on community living, many of these concerns would be removed and individuals would be able to have all the person centered supports they need.

Act!  What we need from you:

1) Respond to the Chicago Tribune (ctc-tribletter@chicagotribune.com) telling your story and highlighting the major issues with the article;
2) Share that letter with your state legislators highlighting the need for additional funding for community living;
3) Support the They Deserve More campaign, which is fighting for additional investment in staffing so that individuals can get the supports they need;
4) Advocate for the Arc’s efforts to expand capacity in the community to support people with intellectual and developmental disabilities and significant behavioral health support needs.  These folks with dual diagnosis are some of the individuals who are going into state operated developmental centers still.  We want to divert people and provide the unique and additional supports they need in order to live in homes in the community.  (Bill number to follow).

Major Medicaid Issues – the Arc is Advocating and We Need Your Help!

When HFS rolled over to new software a few months ago, individual and families have faced significant Medicaid issues.  We have heard about many of the following issues BUT if you additional issues, you can fill out this form and send it to familytofamily@thearcofil.org.  Issues we are seeing include:

  • Medicaid category being changed to ACA from aged, blind and disabled for SSI recipients over age 18
  • Inappropriate re-determination and application denials
  • Request for( unusual) superfluous information such as parental  income and assets
  • Confusion around guardians and the Medicaid “Approved Representative form”
  • Missing rollover of Medicaid buy-in payments
  • People placed incorrectly in integrated care plans (e.g. Chidlren’s SSI recipients, child and adult TPLs)
  • Lack of access to ABE website because of lack of credit history for “identity verification”
  • Missing notification letters
  • Lack of awareness of related to Medicaid managed care

There are other issues so please continue to share them with us!  

The Arc is advocating!  We have collected this information and are sharing it with Healthcare and Family Services.  In addition, we have talked with HFS and DDD and are advocating for interim solutions, while the Department makes software and other fixes.  Suggestions include identifying a point person for people on the waiver, creating instructions for families specifically on waiver services about how to fill out the forms correctly and standard responses to ongoing questions.

We are hoping to have a fact sheet soon that has been approved by HFS and will help to answer some of the consistent issues.

Medicaid experts will be speaking at the following Arc events:

In addition, here is a link to a general webinar Moving Forward in Managed Care: Working through the Transition, March 1 1:30 pm, (https://attendee.gotowebinar.com/register/2242965626523522049) about the new online Medicaid system Manage My Case even though it is a problem to access without a credit history.

If things are not addressed soon, we will step up the advocacy further and do a call to action.  For questions or to provide additional areas of concern, you can email Meg at meg@thearcofil.org.

Don’t forget there are opportunities to work at the Arc of Illinois!  Check out the Ligas Family Advocate job description here.


Meg Cooch Signature
Meg Cooch
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)