The Arc of Illinois Weekly Update

Please note, the Arc of Illinois will closed Dec 23 until January 2.  Only updates with significant news will be send until then.   Highlights in this update include:



Federal Update

House and Senate Pass Tax Reform Bill into Law
Yesterday, the House of Representatives and Senate passed a massive tax bill, which will be signed by the President in the next 10 days that will have a long-lasting impact on our debt, health care, and long-term services and supports for people with disabilities.  You can see The Arc of the United States’ statements on House and Senate passage here and here and the final House vote here and the Senate vote here.

While the final tax bill restores some important tax provisions for people with disabilities (the medical expense deduction, work opportunity tax credit, disabled access tax credit, and the low-income housing tax credit), the final bill will lead to millions more Americans without health insurances and guts the federal revenue base.  There is a concern that in the new year this will result in attempts at massive cuts to Medicaid, Medicare, SSI/DI, SNAP, TANF in addition to discretionary programs.

Thank you for all your advocacy work on this bill and the previous healthcare and Medicaid fight.  We know how exhausting this work has been.  But we cannot let up.  We have honed our skills and now we must be ready for the next fight.   It is more important than ever that we remain strong and not allow us to be divided!

Millions of Americans with Disabilities Left Out in the Cold: No Expansion of Eligibility for ABLE Accounts in Final Tax Reform Bill
Huffington Post, 12.19.17
There was a time where values directed behavior of elected officials and was defined by sensitivity to the individual differences of others, expectations of fairness and mutual respect, and an enduring commitment to replace prejudice and fear with compassion and civility.

Congress works to avoid a Government Shut Down
House leaders want to enact the continuing resolution today, but it is far from certain they have the votes to do so – and the Senate hasn’t weighed in yet.  Among the provisions in the government spending bill that the House dropped late Wednesday night:
– Funding the CHIP program with $2.85 billion through March 31.
– Extending CMS’s ability to use Redistribution Funds to help states dealing with CHIP-related funding shortfalls.
– Funding community health centers and other health programs by cutting the ACA’s Prevention and Public Health Fund by $750 million.
See the bill | See the summary

House leaders want to enact the continuing resolution today, but it is far from certain they have the votes to do so – and the Senate hasn’t weighed in yet. Lawmakers also are trying to push through a separate $81 billion disaster package for hurricane relief. It could be an unpredictable day ahead of Friday’s deadline to fund the government.



State Update

Medicaid Consolidation and Contracts
From Crain’s Chicago Business’ Kristen Schorsch 
“The key ingredients of Gov. Bruce Rauner’s Medicaid managed care overhaul are outsourcing the bulk of the program to private insurers and paying them cheaper rates. By doing so, the state intends to save an estimated $1 billion over four years. But the Rauner administration is keeping some crucial details secret. The Illinois Department of Healthcare & Family Services, which runs Medicaid, redacted reimbursement rates from the contracts for four of the seven insurers selected through a competitive bidding process. Crain’s obtained the contracts through the Freedom of Information Act.” Story here

Exodus from the Capitol
The long-running Rauner-Madigan war had its casualties. From a Sept. 20 story: Since Rauner was sworn into office in January 2015, at least 43 of 118 House seats and at least 14 of 59 Senate districts have already seen or will see changes by the time next year’s elections are concluded. That’s 36 percent of the House and nearly a quarter of the Senate. All told, it’s one-third of the entire General Assembly.

The tax hike vote is driving some of the churn: Of 15 House Republicans who initially voted for the income tax hike, only six are running for re-election. Five of the six have drawn primary challengers.

This all encourages individuals and agencies to think about creating new relationships and telling your stories to educate the potential new policy makers.



I/DD Home and Community Based Services News

Adult Services Waiver Approved
Illinois was informed that the Home and Community Based Services Waiver for Adults with Developmental Disabilities was approved by the Center for Medicare and Medicaid Services.  Unfortunately the approved waiver, while including some recommended changes by advocates, still continues to underinvest in community living, does not transform or add flexibility to the system to address individual needs or address the waiting list.  It also inadequately funds supported employment and integrated community day programs.

The approved waiver can be found at: The major changes can be found on page one of the waiver.

Here is what Director Fenton said in DDD Scoop:
“I am pleased to announce that the Home and Community Based Services (HCBS) Waiver for Adults with Developmental Disabilities has been approved with an effective date of July 1, 2017. The renewed waiver will continue to serve individuals age 18 or older who meet an intermediate care facility for individuals with intellectual disabilities level of care… With the approval of the adult waiver and the two children’s waivers earlier in the year, the Division is looking forward to collaborating with stakeholders to ensure continued waiver compliance and obtaining consensus on amendments to the waivers that will advance systems change initiatives.”

Latest DDD Bulletin: Guidance on Annual Audits of Day Programs
The Illinois Department of Human Services/Division of Developmental Disabilities (ILDHS/DDD) must conduct ongoing annual reviews of Medicaid Waiver programs per the approved Medicaid Waiver Application. Through this notice, it is DDD’s intention to provide additional guidance on the billing process and what constitutes an adequate audit trail for Day Program Services. Day Program Services include: Supported Employment (group or individual setting), Community Day Services, and Adult Day Care Services.

The explanation of the bulletin and the web link to the form can be found here:

Other Issues:
Office of Inspector General Postings of Substantiated Findings/CILA Scorecard Discussion – The Arc along with a number of other groups participated in a discussion about how to share OIG substantiated findings from CILA homes in way that offers transparency and decreases confusion for families around the findings.  As we have reported previously, OIG posted and then removed a website where they reported findings with names of staff.  The most recent meeting suggested a path forward, which will allow organizations to offer a response to findings and potentially connect the website to the future CILA Scorecard that is expected to be unveiled soon.

HCBS Task Force – Last Legislative Session, SB84 mandated a Home and Community Based Services Task Force, created to look at how Illinois could utilize federal funding better for HCBS.  There are a number of Arc leaders and staff participating in the 12 person group.  It falls under the open meetings act so anyone is welcome to participate.  The Task Force is meeting monthly through June as well as has a number of work groups to focus on specific areas including other state models, funding structures, and housing.  Four legislators are expected to participate as well.

Person Centered Planning – As you might have heard, the Division has developed a timeline for implementing an new policies and procedures guide to PCP for ISCs and organizations.  The Life Choices Work Group 4 will be reviewing it in January with the hope that training will follow.  In the meantime, it is expected that the division will be hosting ISC and service provider meetings.  The Arc has a webinar set up for families January 9 from noon to 1 pm.   Andrea Medley, Life Choices Statewide Coordinator and Kit O’Brien Cota, Life Choices Program Manager at Illinois DHS will be presenting. This presentation is designed specifically for families and the focus of this presentation will be on how the person-centered process is affecting the individuals served by Illinois DHS Division of Developmental Disabilities. There will be time for questions at the end of this presentation.  Click here to register for that webinar.

Family members/caregivers interested in participating are asked to please watch the following presentations online prior to January 9th to get the most benefit from the information that will be presented.
• An Overview of Life Choices, Life Choices System Transformation 4-24-17 (21 minutes)
• Person Centered Planning Process Discovery, Personal Plan, Implementation Strategies (18 minutes)

Proximity Rules for CILAs Targeted – Justice Department filed a lawsuit against the city of Springfield against its rule creating a minimum proximity between CILA homes.  IAG has been in fight with the City of Springfield because of this rule.   Springfield demanded that they move a group of three men who had been living together with individual leases with IAG bringing in services.  There was an unpublished group home close to them which broke this proximity law.  IAG sued and the judge put an injunction on Springfield’s requirements.  Two weeks ago, the Justice Department filed its own lawsuit against Springfield indicating they thought the proximity law was illegal.  This is one to watch!

The Division is as well – from Director Fenton’s DDD Scoop yesterday:  “our Administrative Rule on CILA precludes CILAs owned or leased by an agency and funded by the Department to be located within a distance of 800 feet from any other setting licensed or funded to provide residential services for persons with a developmental disability or mental illness.  Interestingly, when I first questioned the 800-feet rule, I was told that its intent is to prevent a high concentration of CILAs in particular neighborhoods or communities, which would be the antithesis of true community integration.  And while I understand that concern, this rule has always rubbed me the wrong way because I believe that we should be in the business of increasing opportunities for community integration and community inclusion ─ and not limiting them by restricting where people can live ─ regardless of the rationale.  As such, we are working with the DDD Regulatory Advisory Board to eliminate language on distance requirements in our Administrative Rule on CILA. We’ll keep you apprised of our progress.”

Funding for New CILAS
The Division has announced a new program to provide financial assistance to CILA agencies to develop new capacity.  The announcement, in the Dec. 4 edition of the DDD Scoop, said “a limited amount of funding” may be made available to help offset building or renovation costs.

It is very welcome news, and it comes as a surprise, considering the poor financial condition that the State has been experiencing.  The announcement said the Division “recognizes that this has been a difficult year for our 60D CILA providers, particularly with respect to making decisions on expanding capacity.”

For information, contact Jennifer Elders, capacity-building representative in the Bureau of Community Services, 217-558-1425,

What Medicaid Are You? ACA vs. AABD
The Arc has received many calls on this following issues.  The Division tried to clarify the state’s position in the following DDD Scoop:
“The Division of Developmental Disabilities (DD) has received numerous inquiries regarding individual changes with Medicaid.  If an individual’s Medicaid category has recently changed from an Aged, Blind and Disabled (AABD) case to an Affordable Care Act (ACA) case, the individual will continue to be eligible for DD waiver services.

A misconception has been raised regarding individuals enrolled in the DD waiver. Guardians and/or agencies have a belief that individuals should be placed on an AABD case. This simply is not true.  What matters is that a DD waiver recipient is Medicaid eligible. It does not matter which Medicaid program they are enrolled in.  If anything happens with a customer on a DD waiver, it will be handled by the Medicaid office at that time (i.e., ages out, begins receiving Medicare, etc.).

The Division is aware that those who were eligible under AABD were converted to ACA adults unless they are 65+ or receiving Medicare.   This is in keeping with the fact that since ACA started, persons who applied for Medicaid and were eligible for both programs, were included in the ACA adult category.  The benefits to the clients are that they can have income up to 138% Federal Poverty Level and do not require resource verifications.

On April 27 of this year, the DD and HFS hosted a webinar that explains the Medicaid eligibility process. Please use this link to view the recorded webinar and six-page hand out.



Resources & Opportunities

Partners in Policymaking
Individuals with Intellectual and Developmental Disabilities and parents especially with younger children are encouraged to apply for the Partners in Policymaking program.  Many Arc leaders went through the program 20 years ago when it was last funded and at least one has indicated that “Partners changed my life”.  Partners is an excellent leadership training program for individuals with I/DD and their families, encouraging positive partnerships with government officials.  Details and an application form will be available later this week at   Application deadline is Jan. 19.  Thirty participants will be selected.  They will attend eight weekend sessions in Normal from February to October.

MS of Human Services Management Starting
National Louis University is building a cohort of students for our M.S. of Human Services Management at Trinity Services in New Lenox.  Check out the flier and information here.  You can go to for more information as well.



Important Dates!

  • Jan 3 – Executive Forum Webinar for Arc Organizational Affiliates
  • Jan 8 – Arc Board of Directors Conference Call
  • Jan 9 – Arc Life Span Luncheon Webinar – Person Centered Planning
  • Jan 19 – Deadline for Partners in Policymaking
  • Jan 23 – Arc Q Conference
  • Feb 1-2 – Arc Leadership Conference