As we head into the holiday weekend/week and next week’s Arc Convention, we wanted to share a quick update and call to action.

Call, visit, email, tweet your state legislators while they are on Spring Break! 
You have 10 more days before state legislators return for the last big push of the Legislative Session.  This year there are many bills that cost money and are being placed into a subcommittee and being reviewed in smaller groups (medicaid working group and the budgeteers).  We need YOUR HELP to keep our issues in the front burner as negotiation happens.

How You Can Help:
Call, email or visit your state representative and senator and ask them:

  • “Please support wage increases for Direct Support Professionals and sign on to HB2148”  Action Alert here.
  • “When voting on Medicaid improvements, please support efforts to fix and streamline Re-Determinations for people with intellectual and developmental disabilities”
  • “Please support expanding supported and customized employment for people with disabilities”

We need you to help us keep up the pressure and be heard over the other issues!

New Additions to the Administration
We heard great news yesterday that Rahnee Patrick, Director of Independent Living for Access Living and a current member of the Rehabilitation Council, has been appoint as Director of the Division of Rehabilitation Services.  She currently utilizes home services so she has first hand knowledge of much of the agency’s work.

We also heard the Ryan Croke, the current Executive Director of the Network of Centers for Independent Living, has been appointed as chief of staff for the Department of Human Services.  He will bring great knowledge of all disabilities but has been working closely with the Going Home Coalition and the Arc on a number of fronts.

Here is the full announcement of additions.

Other State Updates:
Here is where we are mid session after the deadlines ended to get out of at least one chamber.  I have bucketed issues in four categories – bills which made it out of at least one chamber, bills that did not and do not appear to be moving, bills that are under discussion in the Medicaid working group and bills under consideration in the budget process.

Moving Forward:

  • SB2055 (Murphy), House Bill 3483(Gabel) – PUNS communication/transparency
  • SB 2087 (Fine), HB3115 (Mussman) – Customized employment pilot
  • SB 190 (Morrison)- SB 190 requires that the SD list of qualified persons with disabilities be provided to agencies along with the list of eligibles when there is an available position.
  • SB111 (Morrison) – Dental Sedation – cap at 26, Will be in the Insurance Committee of the IL Senate and proceed as a private insurance bill with age cap of 26.
  • SB1214 (Tom Cullerton), HB 823 (Willis) -Blood Draw Bill for people with DD.
  • HB 3299 (Davis) – Sex Education/Sex Health/Sex Safety – requires training to be available for people with I/DD on sexual health, sexual ed, sexual safety
  • SB726 (Morrison)–Creates for internships at state agencies for people with disabilities
  • HB 344 (Bennett) – CILA/DD residents can use electronic monitoring devices

In smaller groups waiting for budget and/or omnibus:
Medicaid working group:

  • SB2021 (Steans) – Medicaid Eligibility/Re-D – Protect Our Care – we are working to get passive re-d for I/DD in the bill.
  • SB2095 – Medicaid Re-D stand alone – creates passive re-determination for people with I/DD
  • HB 2845 (Conroy) – Medicaid Managed Care programs must provide individuals under 21 years of age coverage for the diagnosis of autism spectrum disorders and for the treatment of autism spectrum disorders to the extent that the diagnosis and treatment of autism spectrum disorders are not already covered by the Medicaid managed care plan.
  • HB2845 (Conroy) – IL Medicaid to cover medically necessary treatment for ASD, including ABA.


  • HB 2148 (Gabel) and SB 1148 (Steans) – DSP Wage increase to 1.5 factor of minimum wage
  • HB2915 – Assistive Technology pilot – shell bill
  • HB2815 (Costa Howard) – Increase personal needs allowance – increase to 15% of SSI
  • SB1316 (Aquino) – Increased rates for Early Intervention

Not moving forward at this point:

  • HB844 (Hoffman) – Exempt ISC from the GATA NOFO process retroactively
  • HB2600 (Morgan)- Illinois Disability Integration Act – creates a HCBS entitlement
  • HB 3340 (Mah)– Dignity in Pay Act – Ends subminimum wage by 2025 and adds a $50M fund
  • SB 2086 (Fine) – Closing non-certified homes/units on state institutional campuses
  • HB178 (Flowers) – Annual licensing of CILAs
  • SB1366 (Murphy) – PUNS list – pull 3600 by 2022; community supports/housing
  • SB1236 (Morrison) – Requires State agency staff to attend trainings about hiring persons with disabilities.
  • HB 3027 (Willis)– Dental sedation -The legislations goal will be to expand the provider network for people who provide sedation for dental procedures through the IL Medicaid program, while increasing provider rates and payment through the IL budget process.
  • HB 906 (Mussman) – Tax on Durable Medical Equipment by 1%

What can you do – NOW:  The Legislature is on Spring Break!  Call, email, stop by through next week.  When they return, they will be deep in budget and legislative action.  Talk to them now!

ISC transition:  Met with DDD Director Ward this week
DDD is currently meeting with ISCs weekly (transitioning ISCs biweekly), reviewing data transfers and working with ISCs for a July 1 transition.  As a reminder, ISCs who are changing are still supposed to be supporting people until July 1.  We continue to advocate for direct information and support to families during this transition.  We asked for consistent communication and made the following recommendations: hold a webinar to talk to families about the current transition plan, communicate 1-2 more times with individuals who are seeing a change (they are planning to do this already) especially to those who have been pulled or have received early notification as well as those currently on PUNs, establish a point person at the Division for Early Notification of PUNS and PUNS selections and efforts to specifically target ESL and underserved communities, share strategies to address the shrinking capacities of organizations that are transitioning out of services and how the Division will ensure people will get the services they need, retain the current email and website and creation of a complaint/concerns line for at least 6 months after the transition to ensure continuity and performance, share in writing the Division’s commitment to the principle that people should be able to retain a choice of ISC following the transition and address any missed deadlines around person centered planning and Medicaid re-d requirements that does not negatively impact the person because of the transition or databased transfer.  If you are experiencing any concerns with getting the support you need through this transition, please call us or email me at

Rates Oversight Committee/Ligas Consent Decree
Rates committee and its seven subcommittees continues to meet.  There is an RFP for a group to make rates calculations for the state (long process).  Recommendations include in the areas of staff, nursing, employment, assistive technology, transportation, behavioral supports, and ICFDDs.  The Judge is having a hearing in early May to get updates.  The State is still out of compliance on the consent decree.