Arc Policy and Advocacy Update

Still Time To Register for the Oct 3 Living with Autism Conference with Ron Suskind and Paula Kluth!  Register here.  Stipends available here.

Register for the Sept 28 Federal Medicaid Policy and Advocacy Training here.  This training is targeting individuals with disabilities and families, focusing on the importance of self advocacy, a discussion of Medicaid and the various cuts and caps proposals and training on telling our stories.  Email with questions.

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



State Policy and Advocacy

2017 Direct Support Professional Recognition Week is September 10-16!
The Arc of Illinois would like to say thank you to all of the DSPs who makes community living possible! Here is Secretary Dimas’ statement on the week:

“Direct Support Professionals are a vital part of an inclusive society where individuals with disabilities can thrive. It takes a special individual to do the work that DSPs do every day to support our loved ones and I want to thank each and every one of you for it. I know it’s hard work, but your contributions allow individuals with disabilities to live full and meaningful lives. The governor has declared September 11 – 15, 2017 to be Direct Support Recognition Week in Illinois and I encourage all Illinoisans to celebrate and recognize the DSPs in our communities.”

Budget Implementation
Wages: DHS has released the bulletin on implementation of the wage increase.  Although DHS will not be requiring affidavits or other proof of implementation, on a webinar this past week, Gary Kramer and others indicated that the wage should be applied to all individuals equally across the board (not merit or performance based) and that they expect organizations to implement the increase to meet the spirit and intent of the legislature.  If you have further questions, it is suggested that you reach out to Gary Kramer at DHS.

Here are my notes from the webinar.  I tried to type while the staff were talking but forgive me if they are rough.

Also, the Division of Developmental Disabilities (DDD) has posted an updated Rates Table showing new rates for DDD funded services and supports pursuant to Public Act 100-0023.  Please refer to this updated Rate Table for current rates effective August 1, 2017.  The updated Rate Table can be found at the following link:

DD Grants: We have heard that the DD grants including the Autism Program, Life Span, Best Buddies and Epilepsy will be released in the next month so hopefully services will be back up and running soon!

PNA Increase:  HFS put out a public notice on the implementation of the Personal Needs Allowance increase that was included in the budget.  You can comment for up to 30 days on the increase to $60 starting July 6, 2017 here.

Currie to Retire: House Majority Leader Barbara Flynn Currie has made several phone calls to colleagues today to tell them she will not seek reelection.
1 Raise for Illinois Caregivers Approved, Another on Hold
AP, 9.11.17
Advocates say a 75-cents-an-hour wage increase for people who care for the developmentally disabled in Illinois should help group homes hire and retain staff members. The (Springfield) State Journal-Register reports that Gov. Bruce Rauner’s administration indicated last week that the increase included in the 2018 budget lawmakers approved in July should begin within 60 days.



Federal Advocacy

Health care Update – New Bill Released to Repeal
There is still one ACA repeal bill – the Graham-Cassidy bill – being discussed by some Republican Members of Congress and Republican Governors.  Among other things, this bill would block grant and make huge cuts to the Medicaid program, as well as end the Medicaid expansion and marketplace subsidies. Last week Senator McCain (R-AZ), one of the 3 Republicans who voted against the ACA repeal in July, made a public statement of support.  He later said that he believes that any action around the ACA should go through the normal legislative process (i.e. hearing, committee consideration, etc.).  But given the pressure created by the expiring budget reconciliation [on September 30], we think it is important to make sure this bill does not gain momentum. (For more information on the bill see here, and Graham-Cassidy Proposal: Gigantic Block Grants and Huge Health Care Cuts and Cassidy-Graham Would Deeply Cut and Drastically Redistribute Health Coverage Funding Among States).
Last week and continuing into this week, the Senate Health Education Labor and Pensions (HELP) Committee held hearings about health insurance marketplace stabilization (not about Medicaid).  This is a positive step in a bi-partisan direction.

The Senate parliamentarian issued an opinion last week that the vehicle that Congress was using for healthcare reform – Fiscal Year ’17 budget reconciliation (which allows the Senate to avoid filibusters while needing only a simple majority to pass the bill) – expires at the end of the fiscal year (September 30, 2017 ).  Of course, the Congress  could pass another budget resolution with reconciliation instructions although it is understood that they would rather use it for tax reform and not healthcare.

What You Can Do:  It is important for Congress to continue to hear from the disability community about the importance of Medicaid.  Call or email your members of Congress to tell them to oppose any cuts to Medicaid,  oppose the Graham-Cassidy bill, and work in a bi-partisan manner through regular order.  The Arc created a new action alert– please share with your networks, with a message of thanks and urgency to remain vigilant in advocacy efforts.




UIC’s Latest Report on Transitions from SODCs
The Institute on Disability and Human Development at the University of Illinois at Chicago is happy to share the latest report and research brief on transitions from State operated developmental centers in Illinois. We have been conducting evaluations in this project since 2001, and the latest report covers transitions between January 1, 2013 and June 30, 2016. You can access PDFs of these files at the link below, and if you would prefer me to send you the PDFs directly, please send me an email.

Research brief:
Full 2017 report:

Fact sheet: Medicaid works for people with disabilities

More than 1 in 3 adults under age 65 enrolled in Medicaid have a disability.  Medicaid provides essential medical care and supportive services that help many of these individuals remain in their homes and communities. Radically changing Medicaid’s structure to a block grant or per capita cap, as in recent Republican proposals to repeal the Affordable Care Act, would threaten the essential services that people with disabilities rely on to maintain their health and independence. More from the Center on Budget & Policy Priorities.

People with developmental disabilities face healthcare disparities
UPI, 9.12.17
Research shows individuals with developmental disabilities experience significant disparities in healthcare quality, access, status and unmet needs. Researchers at The Ohio State University conducted a telephone survey of 42,876 adults and 10,122 proxy interviews for children under 18 with developmental disabilities and found that 14 percent of children had problems getting needed care compared to 2 percent in the general population.



Important Dates!

  • September 28 – Medicaid and Advocacy Training, UIC
  • October 3 – Living with Autism Conference, Lisle
  • October 16 – ABLE Press Conference
  • October 19 – Medicaid and Advocacy Training, Carbondale
  • October 30-November 1 – Speak Up Speak Out, Springfield
  • Nov 14 – Tentative Future Planning Training