The Arc of Illinois Update

Huge thanks to all those who attended and watched the Gubernatorial Candidates’ Forum this week.  We co-sponsored with more than 30 disability organizations.  Five of the candidates attended and more than 700 people watched in person, via a live stream or following the event from around the state.  If you missed it, check it out here.  They talked about rebalancing, employment, housing and more.  Stay tuned for the registration for the State Attorney General’s Forum Feb 9.  Register here.  Submit your questions for the Attorney General today here.

Register for The Arc of Illinois Lunch Webinar – Special Recreation and Special Olympics Programs in Illinois on Feb 13, 2018 12:00 PM CST Register here.

Thanks for those who participated 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 State Policy

Warning issued over putting medically fragile children in Medicaid managed care
Wednesday, Jan 17, 2018
* Susan Agrawal writing in Crain’s
Recent questions over Gov. Bruce Rauner’s Medicaid managed care overhaul have mostly focused on the program’s rising costs and secretive contracting processes. Much less attention has been paid to the potential human impact of the program, which will force more than 500,000 people to change their insurance plans, and touch roughly one quarter of all Illinois residents. While the goal of the program is to improve health and reduce costs, there will, in fact, be plenty of people harmed by the transition.
Among the most at-risk are children with chronic, severe medical conditions, also known as children who are medically fragile. For children who are medically fragile, managed care will be devastating. Cutting services and benefits is the only way for managed care organizations to reduce costs for this population.  More here.

CMS Region V meeting – Last week, a number of Arc leaders participated in the CMS Region V meeting.  A shout out to IARF for leading the planning of the day.  The two topics were the HCBS rule implementation and the workforce crisis.  In addition to having about six CMS staff participating, sharing and listening, the states jointly plan to submit our priorities and recommendations to CMS directly.  More to follow about the discussion but here are some quick takeaways:

  • The HCBS rules are still planned to be implemented.  However, in the next 2-3 months CMS plans on releasing a more detailed guidance on “characteristics of home and community based services” that will help the state with heightened scrutiny reviews.  Melissa Harris also highlighted that CMS’ goal is not to close down providers but instead to help providers to address any concerns around isolation of individuals especially during day programming.  They indicated that CMS was working everyday with states including Illinois to address any concerns around their yet to be approved transition plans.  She indicated they were pretty close to being done/approved.
  • Although CMS was very clear to say we should not expect new money from them to address the workforce issue, they are very aware of it and are looking for ways to help support states to address it.  They listened yesterday to ideas we had about addressing it.
  • Director Fenton presented IL efforts to begin identifying TANF recipients who might be possible DSP workers.  OH showed us a new statewide website that people can go to see job opportunities and apply directly – there is potential with this! and Sarah Meek from ANCOR talked about a number of potential opportunities including possible draft state language around rate transparency.

Federal OIG Report – As some of you might have heard, the Joint Report on Ensuring Beneficiary Health and Safety in Group Homes through State Implementation of Comprehensive Client Oversight was released this week.  This report reflects the federal Office of the Inspector General investigation of Connecticut, Massachusetts and Vermont among other states around the state’s oversight of critical incident reporting and enforcement.  We definitely have concerns that other states will be pursued and some of the framing could be similar to the issues raised in the Tribune articles.  We are currently reviewing the document and will share more soon.  They have not announced additional states yet for further review.



Federal Policy and Advocacy

Senate Votes to End Government Shut Down

Senate Minority Leader Chuck Schumer announced Monday that he and Senate GOP leaders have reached a deal to reopen the government, and the chamber is on track to pass a plan to keep the government funded for three weeks.  More here.
Family Support – RAISE Family Caregivers Act Awaiting President’s Signature

The Senate passed H.R. 3759, the Recognize, Assist, Include, and Engage (RAISE) Family Caregivers Act by voice vote on January 8. The Arc supports this bipartisan legislation introduced Senators Susan Collins (R-ME), Tammy Baldwin (D-WI), Lisa Murkowski (R-AK), and Michael Bennet (D-CO) and Representatives Gregg Harper (R-MS), Kathy Castor (D-FL), Michelle Lujan Grisham (D-NM), and Elise Stefanik (R-NY) that calls for the development of a national strategy to support the nation’s more than 40 million caregivers. The RAISE Family Caregivers Act would bring together stakeholders from both the public and private sector to create an advisory body. This advisory body would then develop recommendations for how government, communities, providers, employers, and others can better recognize and support family caregivers.

Medicaid – CMS to Allow States to Impose Work Requirement for Medicaid Eligibility

On January 11, the Center for Medicare and Medicaid Services (CMS) issued guidance about how states can require some Medicaid recipients to work in order to receive coverage. While the guidance requires states to exclude some people with disabilities from the requirement, it acknowledges that such an exception will not cover all people with disabilities. To learn more, read The Arc’s statement on the guidance.

Health/Medicaid – Senate Finance Committee Holds Hearing on HHS Secretary Nomination

On January 9, the Senate Finance Committee held a hearing on the nomination of Alexander Azar to be Secretary of Health and Human Services (HHS). During the hearing, Azar stated that he supported elements of last year’s health care bills, including the repeal of Medicaid expansion and per capita caps on traditional Medicaid. HHS is the cabinet level department that administers most federal health and social service programs, including Medicare, Medicaid, Affordable Care Act programs, Developmental Disabilities Act programs, Head Start, and Temporary Assistance for Needy Families. Additionally, it oversees the Centers for Disease Control and Prevention, the Food and Drug Administration, and the National Institutes of Health. Visit the committee web site for more information, including archived video of the hearing.

Medicaid/LTSS – The Arc and Partners Hosts Congressional Briefing on Community Integration for People with Disabilities

The Arc and other disability rights organizations joined the offices of Representative Jan Schakowsky (D-IL), Representative Jim Langevin (D-RI), and Senator Tammy Duckworth (D-IL) in hosting a briefing on January 11 for Congressional staff titled “Community Integration for People with Disabilities: Policy Opportunities and Challenges.” Julia Bascom, Executive Director of the Autistic Self Advocacy Network, moderated the briefing. Panelists were Cathy Ficker Terrill, national disability services expert and parent; Alison Barkoff, Director of Advocacy, Center for Public Representation; Nicole Jorwic, Director of Rights Policy, The Arc of the United States; Ken Capone, Public Policy Director, People on the go Maryland; and Pam Wright, a parent advocate.



 HCBS Act: What the CMS Settings Rule Means for You

The deadline for implementation of the HCBS Settings Regulations is on March 17, 2022. While the reporting requirements fall on state agencies, the direct responsibility for success falls on the individual support providers.
This webinar shares an overview of the HCBS Settings Regulations, the implications for agencies, and the effect on the lives of those receiving supports as well as their families.
1/23/18 • 10:00am – 11:30am CST


  • General expectations and requirements established by CMS
  • Impact on issues like privacy, security, independence, rights, etc.
  • Effect on physically accessibility of environments
  • Person-Centered Planning Requirements
  • And More!

They can click here to get to registration:



Together for Decades, 5 Men Aim for Independence

WTTW Chicago Tonight, 1.17.18
How independently can adults with intellectual disabilities live as they age?  It depends on the extent of their disabilities, but also on getting the right amount—and type—of support. In a single family home on a residential block in northwest suburban Park Ridge, five men have lived as a kind of family for more than 20 years.



Important Dates!

  • Feb 1-2 Leadership Conference
  • Feb 12 – Arc Board of Directors
  • Feb 13 – Tuesday Lunchtime Webinar Series