The Arc of Illinois:  Medicaid Block Granting Proposal

Reminder DUE TODAY BY MIDNIGHT – Comment on the State Board Proposed Rules around Seclusion and Restraint

Don’t miss the opportunity to share your thoughts, stories and experiences about the Illinois State Board of Education regarding their proposed new rules around seclusion and restraint.  The proposed rules prohibit isolated seclusion and some restraint.  ISBE MUST hear from self advocates, families and organizations.  Comments do not need to be comprehensive or formal.  Here is a link to the summary of the proposed rules. The full text of the proposed rules can be found at this link. Information, questions, input should be directed to: Azita Kakvand, Agency Rules Coordinator, Illinois State Board of Education, 100 North First Street Springfield, Illinois 62777-0001, (217) 782-6510,

Here is our comments but please remember, you can tell stories and experiences, you do not necessarily have to comment on all the detail.

Input for National Family Caregiver Strategy Due February 7

The Administration on Community Living (ACL) is seeking public input for the development of a national strategy on family caregiving. Advocates are encouraged to comments on issues relating to caregiving, such as paid leave, tax credits, and respite options. Please see the Consortium for Citizens with Disabilities’ sample comments. Submit your comments here by February 7.

DDD Latest Announcements

We at the Arc appreciate the latest updates from Director Stark about new things coming out of the Division of Developmental Disabilities, including the expansion of the short term stabilization homes to also support people coming out of SODCs.  Also covered are reminders about the AT webinar, clarifications about Medicaid providers requirements, HRST updates and SODC transitions to CILA.

Accessing Assistive Technology, Adaptive Equipment and Home & Vehicle Mods Through the Waiver Webinar

The Division of Developmental Disabilities will be presenting a Webinar on items and modifications that can accessed through the waiver on February 19th from 10am to 11:30am. Although it is the same day as the Budget Address, I am hopeful I will be able to start the webinar by talking about the Division’s interest in the expansion of technology use for the individuals in our communities, as well as the status of our AT Pilot. We will then turn it over to Jim Eddings and George Bengel who will walk attendees through the process for approval and answer specific questions.

Impact Enrollment

We’ve received a few inquiries in regards to the HFS notice posted last week ( This change would primarily impact individual service delivery providers (such as therapists), suppliers and vendors who sell equipment or technology, and contractors who perform home and vehicle modifications. It will also impact providers who are NEW to providing services to people in the DDD HCBS Waivers.  This change does not affect service providers or vendors who are already enrolled through IMPACT with the Division of Developmental Disabilities.  This change does not affect individuals who receive HCBS Waiver Services.

HRST Update

As you know, DDD is implementing the electronic version of the Health Risk Screening Tool (HRST) ( I’m happy to report that there are only 8 providers who still need to complete the Service Agreement with Health Risk Screening (HRS). If this is your agency, please do so ASAP!  If you have already signed the Service Agreement the next major step is to work with HRS to have both your user data, and individual data, entered into the Health Risk Screening Tool (HRST) database.  This step must be completed by 3/31/2020.

To date, there are 454 raters entered into the system and in the process of taking the online trainings. An impressive 20% of the raters have already finished the rater training.

The first Clinical Reviewer Training for RN Trainers will be on 2/13 at 9am. RN Trainers must complete the Online Rater Training prior to registering for the Clinical Reviewer Training.

If you need assistance with signing the Service Agreement, entering your data into the HRST database, or enrolling in any trainings, please email For other feedback or questions for the Division please contact:

SST Support Now For SODC Transitions

You are likely familiar with the Support Service Teams (SST) program. SST provide an interdisciplinary technical assistance and training response to individuals with a developmental disability in a medical or behavioral situation that challenges their ability to live and thrive in the community. Information about SST in the community can be found here:

In analyzing discharges from our State Operated Developmental Centers (SODCs) into community-based placements, we’ve found that individuals may require a higher level of support and assistance before, during and after the transition. In the past, individual in SODCs were not eligible for SST assistance until they had fully transitioned to community placement. We are changing the SST guidelines, which will now allow a SST referral prior to moving from an SODC. Now, SST can provide additional support and assistance during the person’s transition to bridge the two settings. We are hopeful this will give individuals, and our community-based providers, increased support and confidence that the transition will be successful.

For questions regarding this program please contact:

SODC Transition to CILA

I do want to take this opportunity to remind, or reassert, that the Division would like community-based providers to consider serving individuals that would like to transition out of our SODCs. We will provide a “transition safety net” letter to a provider that may have concerns with accepting a referral from an SODC, which would include a provision that the individual could return to the SODC if the transition was unsuccessful.

For questions regarding this program please contact:

They Deserve More Continues to Advocate for Increases in Wages/Rates In Spring Session

The Arc is working within the larger They Deserve More (TDM) coalition to ensure that we continue to push for investment in home and community based services.  We will share the latest legislation once it is finalized but it will serve as a platform for hearings on the need to increase frontline wages and rates.  If you are interested in sharing your story as a self-advocate, family member or community organization, let me know – you can email me at

Other Federal Updates

Medicaid: CMS Releases New Block Grant Guidance

On January 30, the Centers for Medicare and Medicaid Services (CMS) released new guidance allowing states to cap their federal Medicaid funding for the low-income adult population in exchange for greater flexibility to limit coverage. States would be allowed to restrict eligibility, provide limited health care benefits, reduce access to prescription drugs, impose burdensome work requirements, and make other changes that are detrimental to Medicaid beneficiaries. This guidance does not appear to directly impact the portion of the Medicaid program that funds home and community-based services for people with intellectual and developmental disabilities (I/DD). However, many people with disabilities, including people with I/DD, are part of the Medicaid expansion population and could be directly impacted. Read The Arc’s statement.

Employment/Family Support: House Committee Holds Hearing on Paid Leave

On January 28, the House Committee on Ways and Means held a hearing titled “Legislative Proposals for Paid Family and Medical Leave.” Witnesses were Representatives Rosa DeLauro (D-CT), Ann Wagner (R-MO), and Elise Stefanik (R-NY); Joan Lunden, former host of Good Morning America and women’s health and wellness advocate; Kemi Role, Director of Work Equity at the National Employment Law Project; Sharon Terman, Director of Work and Family Policy at Legal Aid at Work of California; Hadley Heath Manning, Director of Policy at Independent Women’s Forum and Independent Women’s Voice; Rebecca Hamilton, Co-CEO of W.S. Badger; and Vicki Shabo, Senior Fellow for Paid Leave Policy and Strategy at New America. Visit the Committee website for more information or to access video of the hearing. For more on ensuring that paid leave works for people with disabilities, visit

Major Events Ahead

Housing: House Committee to Hold Hearing on Fair Housing Rule

On February 5 at 2:00 p.m., the House Committee of Oversight and Government Reform Subcommittee on Civil Rights and Civil Liberties will hold a hearing titled “A Threat to America’s Children: The Trump Administration’s Proposal to Gut Fair Housing Accountability.” This is part of a series of hearings exploring the impact the Administration’s regulatory policies on children. Witnesses will be Ms. Ateira Griffin, Chief Executive Officer and Founder, BOND, Inc – Building Our Nation’s Daughters; Ms. Ellen Lee, Director of Community and Economic Development, City of New Orleans; Dr. Megan Sandel, Principal Investigator, Children’s Healthwatch, Boston Medical Center; and Mr. Jorge Andres Soto, Director of Public Policy, National Fair Housing Alliance. Visit the Committee website for more information or to access live video on the day of the hearing.


Paul Marchand Internship Application for Summer 2020 Session Due Feb. 15 The Paul Marchand Internship Fund will provide $6,000 per semester or summer session to assist interns interested in pursuing careers in public policy advocacy for people with intellectual and/or developmental disabilities (I/DD). For 38 years, Paul Marchand was a dedicated disability policy advocate and recognized leader working on behalf of people with I/DD and the larger disability community. Upon his retirement in 2011, The Arc, with substantial contributions from United Cerebral Palsy, other organizations, and individuals with whom Paul worked during his decades in Washington, DC established an internship to honor Paul and to continue to cultivate disability policy advocates. Applications for the summer 2020 session are due by February 15.