We Need Your Voice and Your Story:
As we move bills through the legislature, they often ask for us to testify or have people with disabilities and families share their experiences and the ways they would be impacted by bills.

We are looking for:

  1. People who have had issues with Medicaid applications or re-determinations.  If you have had an issues and would be willing to testify out it (mostly likely in Springfield), please fill out this brief form.
  2. People with disabilities or families who want or need customized employment support.   If you have had an issues and would be willing to testify out it (mostly likely in Springfield), please fill out this brief form.
  3. People who are working and were put into ACA Medicaid (from AABD Medicaid) and as a result had issues with their benefits from working. Click here.

HFS Meeting
Last week, we met with Healthcare and Family Services Director Theresa Eagleson and Doug Elwell, the Medicaid administrator.  We have a good mix of family, people with disabilities and professionals in the room.
HCBS Settings Rule: We talked with them about the HCBS settings rule, our concern that stakeholders have not been able to provide feedback in more than two years, concern around training of HFS and DHS staff regarding the rule, concerns around the current rules, regulations and rates that prohibit implementation of the rule among other things.  They are working to hire someone who will focus specifically on this.
Rebalancing: We talked about rebalancing and interest in working together to address in incremental ways this issue – a future meeting is going to be scheduled.
Medicaid Determinations and Re-D Issues:  They are working with us as well as through Protect Our Care to try to address the concerns we and others have.  We mentioned passive re-determinations and/or a modified re-determination that only requires additional material if there has been a change in income.  We will be following up with them about additional recommendations but they appear to be very aware and interested in making the process easier, especially for people with I/DD.
Medicaid Managed Care – Phase III: We stated we were against the move to HCBS for people with I/DD to Medicaid managed care.  Director Eagleson indicated that they had many more things on their plate before that but then it was raised that we should have further discussions because they would expect that it might come in 4-5 years.  We talked alittle bit about things like value based payments and concerns that our issues are partly health related but also really about people living full lives.
ABA therapy for early childhood: They indicated they are working on this issue and do not feel they need legislation to expand this to at least young children.  They are concerned about making sure the research on the intervention leads and that providers of ABA therapy are high quality.  We would expect to see more on this in the next few months.

Letter from Sec Grace Hou Re:ISC NOFO
I just wanted to make sure you saw the letter, out Friday regarding the ISC NOFO from the new administration.  Sec Hou (who is officially starting today) and I were playing phone tag by our hope is to work with DHS to make sure the transition is as smooth as possible.  She indicated that they will be sending up a Transition Advisory Committee to address concerns specifically around workforce retention, evaluating efficacy and efficiency and making sure person centered planning remains a priority.

Homebased Services Agreement – we submitted comments based on the discussion that was at the Executive Forum as well as with family members around concerns that the new proposed form does not actually ensure compliance with the budget, while eliminating privacy around people’s pay rates and hours.  We recommended working with ACCESS further as the fiscal agent to try to address the issue.  There were also concerns around practicality of getting all the signatures of individuals involved.  Here is the link to the draft notice if you have not had a chance to look at it.  Based on our feedback as well as others, we would expect changes to the document.

Diversion (long term stabilization) homes – we are still waiting for the NOFO to come out regarding implementation of the legislation passed last year to create much needed homes for people with significant behavioral support needs.  We are advocating for the release of the NOFO and the funded.  Initially we were told that there was funding to put two homes in place this year and the remaining four next year.

For Those Concerned about Respite – the Notice of Funding Opportunities are out!
There has been a lot of discussion about the new NOFO for respite services.  The new NOFO is looking to address some of the respite deserts in the state.  However, we are concerned about the issue that more money needs to be added to fully address the needs for respite.  For those in areas without respite, this is a time to talk with local providers or those who provide vouchers elsewhere to cover your area!
NOFO 20-444-24-0833-01 (Residential/In-Home Respite)

NOFO 20-444-24-1545 (Group Respite)

NOFO 20-444-24-1511-01 (Voucher Respite)

Don’t Miss The Arc’s Many Events Coming Up!
Registration is now open for our annual Convention.

Regional Meetings – The Self Advocacy Alliance and The Arc leaders have been holding a series of regional meetings talking about self advocacy, accessing services and legislative advocacy.  We have three more this week and next: Springfield, Joliet and Arlington Heights.  Thanks especially to the Arc Transition Mentors who have been helping to present and manage the events.

The Arc’s Ligas Family Advocates Making Sure Everyone Knows Their Options – Don’t Miss the Ligas/FSN Event on March 21!  This builds on smaller events being held around the Chicagoland area, which has engaged almost 100 people thus far.  The most recent event in Elmhurst, had 45 individuals with intellectual/developmental disabilities and family members and included presentations by key leaders from the Association for Individual Development and Trinity Services Inc about homebased and CILA services, the local ISC and the Agency on Aging. The session was geared to assist families whose loved ones received Notification in December, 2018 of a Spring, Summer, 2019 PUNS selection, but was open to individuals whose loved ones are on the PUNS as well. Two similar events were held in February for Suburban Access families, one last week (also for DayOne PACT individuals and families in Aurora) and has one scheduled for 4/18/19 in Skokie for CAU families.  

The Ligas Family Advocate Program is maximizing these months prior to official selection from the PUNS by getting individuals and families information in order to be ready for pre-admissions screening with their ISCs, to be sure they have applied for Medicaid, and to encourage them to reach out to providers, see for themselves what a CILA group home or Community Day service looks like, and learn more about the requirements for self-directing their services as home-based.  These sessions are the first step in encouraging to think through all choices, ask a lot of questions, review materials distributed and continue a dialogue with their Ligas Family Advocate. Sessions begin with introductions by all attending, sharing what their desires are, what they hope to learn and closing with a discussion of natural and community supports that includes Special Recreation, 87D Pre-waiver respite, and local Centers for Independent Living services.

Don’t miss This Movie: April 3
The Univ. of Illinois at Chicago (UIC) Dept. of Disability & Human Development (DHD) & Chicago ADAPT proudly present the Chicago Premiere of “Piss on Pity: We Will Ride” + panel discussion.
Free, donations encouraged. April 3, 6-8 pm (Reservation required.)
DHD Auditorium, 1640 W. Roosevelt Rd, Chicago, IL

PISS ON PITY: WE WILL RIDE, a one-hour documentary, explores the origins and early history of ADAPT. Beginning in Denver in 1983, ADAPT has become a national force utilizing civil disobedience to fight for the liberation of people with disabilities from institutions, for equal access to society, and for equal rights under law. With over 40 interviews and never-before-seen footage, “Piss on Pity: We Will Ride” gives voice to activists, old and new, who are on the front-lines of the disability rights movement. This screening will be attended by its Chicago producers and director.

This film is captioned in English.

How has activism and civil disobedience changed over the last 35 years? What is ADAPT’s role in today’s rights movements? Panelists: Mike Ervin – ADAPT activist since 1984, columnist & playwright. TJ Gordon – self-advocate, writer, graduate student at DHD at UIC. Noah Ohashi – ADAPT activist, Japanese television commentator. Rahnee Patrick – ADAPT activist, Director of Independent Living at Access Living, Moderator, Robin Jones – Director of Great Lakes ADA, DHD at UIC.

This discussion will be accessible using CART transcription.
DHD Auditorium, 1640 W. Roosevelt Rd, Chicago, IL
Enjoy food, beverages & activist goods at the event. All contributions go directly to Chicago ADAPT.
For reservations & more info, go to:

Sponsors: Chicago ADAPT, Free Our People; Roustabout Media; UIC Department of Disability and Human Development; Bodies of Work

Federal Policy
Education: Military Education Savings Account Bill Introduced

On March 7, Senators Ben Sasse (R-NE), Tim Scott (R-SC), and Tom Cotton (R-AR) introduced the Education Savings Accounts for Military Families Act of 2019 (S.695). This bill would create “Military Education Savings Accounts” that parents serving in the military could use for private school or other education expenses for their children. The Arc opposes this bill because it directs public funds to private schools that are not required to follow the requirements of the Individuals with Disabilities Education Act or the accountability provisions under the Every Student Succeeds Act. View The Arc’s position statement on education, including school choice.

Education: Federal Judge Vacates ED Decision to Delay IDEA Racial/Ethnic Disproportionality Rule

On March 7, a Federal District Court judge overturned the Education Department’s (ED) decision to delay implementation of the 2016 significant disproportionality rule because it was “arbitrary and capricious” and the department “failed to provide a reasoned explanation” for its decision. The requirement for states and school districts to collect and report data on significant disproportionality, and take certain action if it is found, was added to the Individuals with Disabilities Education Act (IDEA) in 2004. However, since that time, few states and school districts have reported any such significant disproportionality. In response to this problem, documented in a 2013 study by the Government Accountability Office (GAO), the Department of Education issued regulations in 2016 to require a standard methodology to calculate significant disproportionality on the basis of race in identification, placement, and discipline. In 2018, the ED announced it would delay implementation of the rule. The Arc is pleased with the court ruling, which will ensure states and school districts move forward with implementation.

Transportation: Air Carrier Access Amendments Act Reintroduced

On March 6, Senator Tammy Baldwin (D-WI) and Representative James Langevin (D-RI) reintroduced the Air Carrier Access Amendments Act (S.669H.R.1549). This bill improves accessibility of air travel for people with disabilities by creating a private right of action for violations, requiring new airplanes to meet minimum accessibility standards, and requiring removal of access barriers on existing planes where feasible. The Arc supports this legislation.

Tax Policy: ABLE Age Adjustment Act Reintroduced

On March 5, Senators Bob Casey (D-PA), Jerry Moran (R-KS), Chris Van Hollen (D-MD), and Pat Roberts (R-KS) reintroduced the ABLE Age Adjustment Act (S.651). This bill amends the Stephen J. Beck, Jr. Achieving a Better Life Experience (ABLE) Act to increase the maximum age of onset limit from before 26 to before 46. The Arc supports the ABLE Age Adjustment Act.


Budget & Appropriations: President Releases FY 2020 Budget

On March 11, President Trump released his fiscal year (FY) 2020 budget. The budget proposes $2.7 trillion in cuts, including a cut of non-defense discretionary spending by 5 percent below FY 2019 caps. The Arc will provide further analysis in next week’s edition of Capitol Insider.

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