Leadership Needed by Self Advocates and Families!

The Division of Developmental Disabilities has a number of committees and meetings coming up where they are looking for direct feedback and participation from people with disabilities and families.  I have listed below some opportunities for you to lift up your voices to help to improve the system and potentially increase resources to home and community based services. DDD has asked us to recommend people who could contribute.  If you are interested in being recommended, please email me at meg@thearcofil.org.

Community organizations – please forward this to your consumer and family groups as we want to ensure that the consumer and family voice is present at all these meetings!


The overall committee has been created in part in response to the Ligas Consent Decree Judge and the ruling that the state has been found out of compliance of the consent decree.  The goal is to review rates and the incentive structure of our current home and community based services system.  Below are the list of Oversight Committee members: Mark Hellner (parent, Arc public policy), Laurie Jerue (parent), Vicki Niswander (parent- former Arc board member), Ron Messner (provider), Mike Bibo (provider), Art Dykstra (former provider and historian), Dan Strick (Provider- New Star – an Arc Member), Ronnie Cohn (Court Monitor), Barry Taylor (plaintiff’s attorney), Scott Mendel (Intervener’s attorney), Meghan Maine (defendant’s attorney), and Melissa Wright (DDD Director).  Howard Peters, the first Secretary of DHS, is the chair.  The first meeting is August 29th.


  • A self-advocate who is interested in participating on the oversight committee as well as an economist.
  • Self-advocates and family members for subcommittees on 1) employment and training, 2) Staffing, 3) Medical/Nursing, 4) Behavioral, 5) Transportation and 6) Technology.


DDD is looking to create a support waiver that will feature a menu of services.  The waiver hopefully will allow an individual to choose which supports and services meet his or her desires and needs.  It would be flexible enough to allow the individual to decide where they want to receive the services (in the family home, in their own home or apartment, etc.) and would be designed to maximize independence.  DDD is looking to convene meetings with people with disabilities and families to understand what people might want in terms of the menu of services for this new waiver.


  • People with disabilities of all ages and families who want to contribute to the creation of a new flexible supports waiver by attending a meeting in one of three locations – western chicago suburbs – Ray Graham, springfield and downstate (mt vernon).

***Please email Meg at meg@thearcofil.org if you are interested in participating in the rates process or the support waiver meetings.  Please note, we are making recommendations to DDD so cannot guarantee that everyone who raises their hands will be able to participate.

We need your help and experience!


Partners in Policymaking is a leadership training program designed for parents of school age children with developmental disabilities. Partners teaches leadership skills, and the process of developing positive partnerships with elected officials and other policymakers who make decisions about services that families use.

The application deadline is August 27, 2018 so please share this information with people you know. There is no charge to attend, the cost for those selected to participate is covered in part by a grant from the Administration on Intellectual and Developmental Disabilities to the Illinois Council on Developmental Disabilities. But class size is limited to 30 participants, act now so you don’t miss out on this great opportunity!

Check it out here!
Apply today!

Meg Cooch Signature
Meg Cooch
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)