Statewide Transition Plan – Thanks to all those self-advocates, families and community organizations who submitted comments around the draft Statewide Transition Plan to implement the home and community based services settings rule.  Here are our comments.  As a reminder, this is just the first step in implementing the settings rule.  The state will pull themes from all the comments and then re-submit the plan to the Centers for Medicare and Medicaid Services for approve.  THEN the state will need to write a final more detailed plan for implementation that we all will need to comment on and submit to CMS for final approval.  This all must be done by 2022 so keep your eyes out for the next opportunity to help inform the state on full implementation of the settings rule.

Legislative Breakfast – Thanks to those who attended the legislative breakfast organized by the Illinois Network of Centers for Independent Living and co-sponsored by the Arc.  We have 20 legislators stop by and delivered material to others.  The legislators included the following – if anyone of these is your legislators, we would ask you to send them a quick email or post and tag them on social media, thanking them for prioritizing learning more about the critical issues facing people with disabilities and bills that are trying to address our concerns.  Attendees include: Representatives Mussman, Peters, Murphy, Bristow, Mah, Halpin, Unes, Severin, Grant, Swanson, Guzzardi, Yednock, Burke, Bryant, Wheeler, Pappas, Bailey, Hoffman, McClure, and Meyers-Martin.  

Ligas Court Monitor Releases Report – Earlier this week, Ronnie Cohn, the Ligas Court Monitor, released her annual report which included the work that she, CQL and the Bureau of Quality Management did to survey Ligas Class Member’s person centered plan and implementation plans.  Check the report out hereAttachment 1. Attachment 2.  We will be doing a summary next week.

Rates Oversight Committee was held on Wednesday where Navigant discussed how they are using the provider wages/expense survey to try to determine median rates for different job categories as it compares the Bureau of Labor Statistics and other national points of reference.  Navigant is still on track to give their report and recommendation to the Division in June/July and which will be shared ideally by August more broadly.  In addition, this week a subcommittee talking about the ICAP also met to discuss the use of the HRST to be able to ensure that funding reflects the needs of people especially those with high medical and high behavioral/mental support needs.  

COVID-19 – Attached are two documents in regards to COVID-19. The first was developed by the Illinois Department of Public Health (IDPH) for Long-Term Care Facilities and is appropriate to use in our ICF/DD environments. The second is from IDHS and addresses our community based partners. We hope that these documents provide guidance and support.

Act Now to Urge Congress to Support Bipartisan DSP Bill

Direct support professionals (DSPs) assist people with disabilities to live independently by providing support with daily living needs like dressing, food shopping, job coaching, transportation, and more. The work DSPs do is vital to making sure that people with disabilities can lead full lives in their communities. But DSPs are underpaid, and the value of this professional work is not always recognized. This leads to high turnover and job vacancies – it’s a crisis.

DSPs and people with disabilities deserve more!

Ask your Members of Congress to support S. 3369/H.R. 6045, the Recognizing the Role of Direct Support Professionals Act, a bipartisan bill. This bill will professionalize what it means to be a DSP and improve data collection around DSP workforce challenges. This is an important step in solving this crisis.

Right now, the federal government classifies DSPs under the larger category of “home health care aide.” This makes it impossible to track and understand the workforce trends for DSPs and to see what regions and support needs are being hit hardest by the crisis.

This new bill would create a separate classification for DSPs, which will lead to better data collection. Accurate data will give the government the information it needs to:

  • fully understand DSP turnover rates,
  • identify where the workforce shortages are,
  • understand where training programs are needed,
  • recognize the important role that DSPs play in supporting people with disabilities, and 
  • ensure DSPs get paid a living wage. 

Take action now, then forward this email to three friends and ask them to do the same!

New Factsheet: Counting Group Homes in the Census

The 2020 Census is just weeks away! The Arc has created a new factsheet to support chapters and provider organizations in understanding how group homes will be counted. There is a great deal of confusion about the process, because it can vary by region. This factsheet aims to clarify the census process for group home administrators. It is critically important for people with disabilities to be counted. Data from the census directs billions of dollars in federal funding that includes services for people with disabilities and congressional representation. You can learn more about the census and people with disabilities and view other census resources from The Arc at  Please contact Claire Manning at with any questions.

Factsheet PDF
Factsheet Word doc

Family Support: Senate Approves Lifespan Respite Care Reauthorization Act
On February 24, the Senate passed the Lifespan Respite Care Reauthorization Act of 2019 (S.995) by unanimous consent. The Lifespan Respite Care Program, through grants to states, helps build coordinated state lifespan respite systems, helps family caregivers pay for respite or find funding sources, encourages development of new and innovative community and faith based respite opportunities, and trains respite workers and volunteers. The House passed its version (H.R.2035) last summer so the Senate measure now goes back to the House for final passage. The Arc supports this legislation.

Education: 40th Annual Report to Congress on IDEA Implementation Released
The Individuals with Disabilities Education Act (IDEA) requires that the Department of Education report annually on the progress made toward the provision of a free appropriate public education to all children with disabilities and the provision of early intervention services to infants and toddlers with disabilities. The report focuses on the children and students with disabilities being served under IDEA, Parts C or B, nationally and at the state level. Notable findings in the 41st annual report, which covers the 2016-2017 school year, include:
·         Almost one-half of students reported under the category of intellectual disability (49.2 percent) and students reported under the category of multiple disabilities (46.1 percent) were educated inside the regular class less than 40 percent of the day.
·         From 2007-08 through 2016-17, the high school graduation percentage increased by at least 5 percentage points for each disability category except intellectual disability (4.7 percentage points), multiple disabilities (0.1 percentage points), orthopedic impairment (1.6 percentage points), and visual impairment (3.4 percentage points).
·         The percentage of students with intellectual disability who graduated with a regular high school diploma decreased slightly from the previous year from 42.4 percent 42.2 percent.