Meet the Council


The mission of the Illinois Council on Developmental Disabilities (the Council) is to help lead change in Illinois so all people with intellectual and developmental disabilities exercise their right to equal opportunity and freedom.



We are excited to announce that the Council has voted to invest a total of $284,061 in response to the “Medical Advocacy: Understanding Rights and Interactions with People with Intellectual and Developmental Disabilities” Call for Investment (CFI), in addition to awarding a Direct Investment to the Association for Individual Development (AID), in the amount of $66,500

Medical Advocacy: Understanding Rights and Interactions with People with Intellectual and Developmental Disabilities 
Funding Decision Overview

Congratulations to the three projects that will be funded under the medical advocacy initiative:
1. The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD)
2. Ray Graham Association 
3. EP!C  

These projects meet the Council’s Systems Change goal under the following objective:
By September 30, 2021, individuals with intellectual and developmental disabilities, their families, and other stakeholders will have access to coordinated, streamlined information about services, supports, and other assistance.

Each project will receive funding over 2 years to implement targets A and/or B, as was identified in the CFI.

Target A:  Individuals with IDD and their family members will know their rights and have the information they need to get their medical care needs adequately and sensitively met.  

Target B:  Healthcare professionals and/or office staff have knowledge and ready access to information, so they effectively and sensitively communicate with patients with IDD and provide quality healthcare service and can quickly access information such as how to assure healthcare coverage and referrals, so the patient is able to follow treatment recommendations.  
Grantee:  The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD) Project Overview

Grantee: The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD)
Project Name: Pre-Service training for Healthcare Professionals 
Project Deliverables:  
Collaborate with five university programs for medical students and enhancing their curricula with the following components: ensuring rights of people with intellectual and developmental disabilities (IDD) for treatment decision and continuum of care, disability etiquette, and knowledge on IDD support services
Host two annual coalition meetings in which collaborating university medical and health programs can network and exchange information on providing treatment for patients with IDD. Provide a means to expand to additional programs
Develop an online web portal at IDHD that collects and disseminates instructional materials related to pre-service training about people with IDD

Grantee: Ray Graham Association
Project Name: Better Communication & Better Healthcare Campaign
Project Deliverables:
Arm individuals with developmental and other types of intellectual disabilities and their caregivers/families with durable, portable and adaptable tools to better self-advocate for the healthcare via a Health Resume
Develop an app for the Health Resume and a pictorial version, which can be readily shared for wider use
Host webinars and a community health fair to educate healthcare providers on use of the Health Resume as an adjunct to electronic records to properly communicate with patients with developmental disabilities regarding their care

Grantee:  EP!C 
Project Name:  Medical Advocacy 
Project Deliverables:  
Educate people and healthcare providers in the 5 county Peoria area
Use the Health Risk Screening Tool and an accessible curriculum for assessment and instruction
Build on a partnership with UnityPoint Health Methodist to train area nursing schools, urgent care and specialty clinics, emergency room and hospital personnel on rights, respect and health of people with I/DD

Community Cares Project 
Funding Decision Overview

Public Act 100-1129, effective 1/1/19, allows for a county, municipality, or township to create a local referendum paid through a real estate tax levy to fund local developmental disabilities services overseen by a Developmental Disabilities board, also knows as a 377 board.  This legislation allows for smaller governmental units, such as municipalities and townships, to create these referenda whereas before it was only available at the county level.  Should voters in these areas pass the referenda, the funding allows for local control and local resources to be invested in local programs for local community members. AID in collaboration with other community partners astutely identified that while this extra revenue stream for DD services could create access to many crucial services at the local level, it was clear exactly how to organize as a community to start the process of getting a referendum on a ballot was complicated and daunting.  For individuals and families to advocate for this at their local levels, education must be provided to give them the tools needed to successfully engage in this process.  

AID Project Deliverables:
Statewide approach targets all IL communities
Creation of website and collection of materials results in replicable opportunities after grant window
A tiered training protocol provides for ample opportunity for people to be educated on the topic then organize for further, in-depth training if desired
12 geographically diverse town halls per region provides for ample opportunity for individuals and families to learn about the opportunity to ask for further trainings
All training materials will be accessible, as well as, translated into Spanish

This project meets the Council’s Systems Change goal under the following objective:
By September 30, 2021, the Illinois Council on Developmental Disabilities will help 10 communities develop local resources and adapt to provide full access to municipal, civic, social, spiritual, and all other aspects of community life for individuals with intellectual and developmental disabilities.

 What's New


Ilinois Partners in Policymaking Class 3 Application is OPEN!

PARTNERS IN POLICYMAKING® (also known as Partners) is a FREE leadership training program designed for adults with developmental disabilities and 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 the services that you and your family use. Partners is accessible, informative and empowering. The graduates of Partners often become members of boards, councils, task forces and advisory committees; some run for elected office. 
PARTNERS is about systems change – creating, working towards, and achieving a vision of shared values about people with disabilities. It is based on the belief that the most effective and enduring public policy decisions are made by the people who need and use services in partnership with elected officials and other policymakers. It is about becoming confident in oneself, competent in the knowledge and information received, and comfortable in sharing the life experiences and expertise one brings to the program. 


  • Disability History
  • Inclusive Education & Life Long Learning
  • Assistive Technology 
  • Supported Living
  • Person-Centered Planning
  • Service Coordination and Self Direction
  • Self-Advocacy
  • Medicaid
  • Supported & Customized Employment
  • IL Legislation and Policymaking, etc.
Note, speakers are national and state subject matter experts or practitioners.


  • A commitment to attend eight weekend sessions in Normal and Springfield IL, and to complete monthly homework and a Personal Advocacy Project.  Participants must attend all eight sessions in order to graduate from the Partners program.
  • An interest in learning and practicing new skills in a comfortable and safe environment. 
  • A desire to build and strengthen a network of people from diverse cultural backgrounds and life experiences.  
  • A willingness to learn from national and state experts who share our vision and values. 

Please download the Partners in Policymaking Brochure for more information Partners in Policymaking Marketing Brochure Class 3.pdf

Click here to apply online or download and print/mail the paper version of the Partners application Partners in Policymaking Application 2019-2020.pdf

Application extended deadline is July 14, 2019 by 5:00 pm Central Standard Time.  Applicants will be notified about status of their application by August 12, 2019

ISC Transition

In one of Secretary Grace Hou’s initial announcements, it was communicated that she would oversee the creation of a self-advocate and family committee to provide suggestions as to how to best create a seamless transition into the new ISC framework starting July 1.  This committee would provide recommendations to DHS, including but not limited to:  
  • Workforce retention, to the extent possible
  • Evaluating efficacy and efficiency over time
  • Continuation of person-centered planning processes 
  • Serve as a sounding board for the Division regarding issues being raised from the field
I was asked to Chair this Committee and have spent the last month listening to those involved to inform a path forward.  In this fact finding mission, I have heard a full continuum of responses ranging from:  “I’m changing ISC’s  but it’s going ok and I know exactly who to call!” to “I have heard nothing, I don’t know anything about my next steps and I am worried.”  We also know that several regions are the subject of litigation as well.  In order to provide a forum for individuals and families on all points in the continuum, we have created an email that will be managed by ICDD staff for at least the next 2 months.  The address is: isctransition@illinois.gov
Please use this address if you are:
a. An individual receiving case management services and will be transitioning to a new ISC
b. A loved one, parent, or guardian supporting an individual through a transition to a new ISC
Please use this address to provide recommendations on the following:
a. Advice to DDD/DHS on ways to ensure continuity of supports
b. Recommendations on how to effectively communicate needed information to individuals and families
c. Highlight areas of confusion or concern that other individuals/families may be experiencing that need surfacing
d. Thoughts on how to evaluate the transition process and overall impact on individuals and families
ICDD staff will field and categorize these responses.  A small committee of selected self-advocates and families involved with this topic will participate on the Committee and synthesize the responses into formal recommendations for DHS/DDD.  

 Additional Resources


ABLE stands for “Achieving a Better Life Experience” and refers to savings and investment accounts that eligible people with disabilities can own for the purpose of financing qualified expenses.  ABLE account owners can save and invest their private funds without losing, or losing access to, federal means-tested benefits, such as SSI, SSDI and Medicaid.  ABLE.FAQs_Web_022619.pdf


ICDD provides grant funding for the Consumer Stipend project administered through the Arc of Illinois.


Illinois became an Employment First State when legislation was signed in July of 2013. To comply with that law and a following Executive Order in June 2014, state agencies prepared an initial Strategic Plan for how policies and procedures will need to change. The full strategic plan and recommendations is now available.  FINAL EEOPD Recommendations Report.pdf


Illinois Emergency Management Agency Offers Emergency Preparedness Tips for People with Functional and Access Needs.


The Council on Quality and Leadership (CQL) HCBS: Advocates Creating Transformation project offers on-line resources related to Medicaid waiver funded services: HCBS-ACT project in Illinois.