State and Federal Update

Here are some of the highlights and calls to action for this week.  For the latest news, please like us on Facebook as well. 

Illinois Special Session

We are wrapping up the first week of Special Session with no movement off the entrenched positions that put Illinois into this situation.  Lawmakers are meeting today for the third straight day of a session that could continue through the end of the month.  Rauner called the session to try to force a deal before July 1, when Illinois could enter its third fiscal year without a budget.  Not passing a budget could trigger a downgrade of Illinois’ credit rating to “junk” status as well as mean no state money for opening schools in the fall and summer roadwork to stop.  House Speaker Michael Madigan has scheduled hearings on a property tax freeze Rauner wants but Democrats say could hurt schools and local governments.

Judge in the federal lawsuit by Medicaid recipients has allowed the state to come back next week with a plan on how they will begin “substantially paying down” the $2 billion in back payments to Medicaid providers.  This points additional pressure on the situation.

The Arc of Illinois is continuing to advocate with others in the They Deserve More campaign for any budget created to include increased wages for direct support workers so folks with disabilities can access housing and services.  The staffing crisis is resulting in limited access to community living for people.  The Arc is also advocating to ensure DD continues to receive grants like the Autism Project, Best Buddies and Life Span.

Save the Date: June 27
Join advocates on Tuesday, June 27th for a statewide call-in day demanding our elected officials pass a full budget with new and permanent revenue to stop the cuts, repair the harm done, and make smart investments in the future.


Senate Releases Better Care Reconciliation Act: Cuts Medicaid More than AHCA

Senator McConnell released the Better Care Reconciliation Act yesterday.  The critical thing to know is that it is very similar to the American Health Care Act that the House passed which cut more than $830 billion…. Only it is worse.  The BCRA proposes that states can either take a block grant or per capita caps.  The growth of Medicaid over time would be attached first until 2025 to the medical consumer price index (CPI) plus one (similar to the House) but would then switch to the general CPI, which is lower than the medical.  That would mean after 2025, the growth in Medicaid spending from the federal government would be ratched back and it would most likely mean significant cuts over time to benefits and populations of people.

The Congressional Budget Office is expected to have a score (which will tell us how much the bill costs over 10 years and how many people will be covered or lose health insurance) early next week.  There is a vote expected on Thursday of next week before the July 4 recess.


  • Call your Senators.  For Illinois, call Senator Durbin at (202) 224-2152 and Senator Duckworth at (202) 224-2854.  If you do not know your legislators, you can find your House member here and your Senators here.
  • Call the Senate HELP Committee and Senate Finance Committee to demand both committees hold hearings on the Senate version of the American Health Care Act.  Senate HELP Committee – 202-224-5375, Senate Finance Committee – 202-224-4515.
  • Call Governor Rauner to ask that he speak up against cutting and capping Medicaid.  Call him at (312) 814-2121.
  • Use Social Media to share information and engage your friends and families using #SaveMedicaid

Illinois will be among those hit the hardest by the Medicaid cuts. Because of our state’s historically low spending on Medicaid enrollees, putting a cap on our federal funding is an especially bad deal for Illinois. If the Medicaid per capita cap went into effect, Illinois would have to find savings in our program to make up for the loss of funding.

Below are more things that you can do or ask others to do from the Arc of the US:

  1. State Letters and Fact Sheets to deliver to your Senator: The Georgetown University Center for Children & Families and NHelp developed  50 state (and DC) specific fact sheets  on how Medicaid caps will harm people in your state. Print and edit this cover letter, bring a few volunteers and deliver it with your state’s fact sheet to your Senators office (you can look up the address for the office here). Take pictures to post on social media and consider writing a press release to generate media attention. Please let us know if you do this activity and would like The Arc of the United States to drop off a similar letter at your Senator’s Washington DC office. Please contact Julie Ward at
  2. Medicaid Fact Sheet: The Arc released a new fact sheet detailing Medicaid’s optional and waiver services that are at risk if per capita caps are enacted.
  3. Social media share graphics: Social media is an important tool for advocacy. Post these graphics on your Facebook and Twitter to spread the word about the importance of Medicaid in the lives of people with disabilities. Tag your U.S. Senators and encourage your chapter members and coalition partners to share these images and tag your U.S. Senators as well. Here are sample posts:

    People with disabilities rely on Medicaid to live in their communities. Share now to spread the word. #HandsOff [INSERT GRAPHIC]

    Medicaid matters to people w/ disabilities. RT to Tell Congress #HandsOff [INSERT GRAPHIC]


  4. Sample letters to the editor: Legislators care what is written in their state and local newspapers. For this reason, letters to the editor are an effective advocacy tool for sharing opinions because they have the authority to educate and ignite readers into action as well as hold the attention of your elected officials. Please take a few minutes to submit this sample letter to the editor to local papers. If you need any assistance or have questions, please contact Sarah Bal at
  5. Resources reminder: Constituent calls to Senate offices are incredibly powerful, particularly at a high volume. Please continue to direct your networks to make calls through this link: Tell Your Senators: NO Cuts to Medicaid, so that we can track the number of calls being made across the country.

    Additionally, please share The Arc’s videos featuring personal stories about Medicaid. If you missed any check them out now: “If I could say one thing”, “Meet Thelma,” “Meet Bryan”“Meet Soojung & Alice,” and “Meet Linda & Javi.”

Last Week to Comment on Adult Services Waiver 

Even if you have already submitted comments, we are hopeful that you will consider sending a brief note through the comments process to speak about supportive employment and the need for adequate rates for this and the new day program category.  Our concern is that the rates were not published during the previous comment time and the Department needs to hear that the proposed rates will result in limited access to these important services.  Here is the information:

On May 31, the Illinois Department of Healthcare and Family Services filed a public notice, extending the time for public comment on the HCBS Waiver for Adults with Developmental Disabilities through June 30, 2017.  The purpose of this extension is to ensure that individuals who lack access to the previously posted electronic versions would have an opportunity to comment.  Similar public notices were filed for the HCBS Waiver for Children who are Medically Fragile, Technology Dependent; HCBS Waiver for Persons with Traumatic Brain Injury and the Supportive Living Program Proposed Waiver Renewal.

Interested stakeholders may view the public notice at:


Important Dates!

  • September 14 – Healthcare Conference
  • October 3 – Living with Autism Conference, Lisle
  • October 30-November 1 – Speak Up Speak Out, Springfield