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Public Policy Survey and Individual and Family Forums

The Public Policy Survey has been closed. Thank you to the nearly 500 participants who completed the survey!

In conjunction with our public policy survey, we have been holding Individual and Family Forums across the state to have conversations with IDD community members about urgent needs to inform development of our public policy priorities for 2024. We are currently analyzing data to present to our Public Policy Committee on November 16th. Committee recommendations will be shared with the board at their December 14th meeting for approval. Stay tuned! 

Thank you to Helen Blackburn and her team at Centerstone, for hosting an Individual and Family Forum on October 25th at their West Frankfort location.



Image description: A group of people smiling and standing against a neutrally painted wall


Thank you to Amy Newell and her team at The Arc of Winnebago, Boone, and Ogle Counties chapter for hosting an Individual and Family Forum on November 2nd at NIU-Rockford.

Image description: Amy Newell and Amie Lulinski stand together smiling.

Community Capacity Investments

Thank you to Beth Owens from IARF for this update:

Recently, the Division released a DDD Communication outlining three community capacity investments scheduled to take effect on November 1, 2023.  Those investments include:

  • Updating Nursing Services Calculations - As of November 1, 2023, DDD is increasing the number of nursing hours reimbursed to providers for insulin support that have been delegated to Authorized Direct Support Professionals (ADSPs). All new Nursing Services Packets (NSP) submitted on or after November 1, 2023, will automatically receive this increase in hours for insulin support that is delegated to ADSPs. Providers who are already receiving reimbursement for insulin support that is delegated to ADSPs will need to resubmit an NSP to receive the increase. 
  • Growing the Capacity of Smaller Homes – As of November 1, 2023, DDD will provide a payment of $6,000 per person to support new 24-hour CILA homes that are licensed for 3 people with single occupancy bedrooms. Providers will receive the payment when the first individual has moved into the home and with confirmation the BALC license is for a maximum of 3 individuals.
  • Support Transitions to the Community - Starting November 1, 2023, in the instance when there is a delay of an individual transitioning from an SODC to a CILA due to unforeseen circumstances, the DDD will fund providers to hold the specific bed for a maximum of 30 days.

The Division has announced these incentives as part of their ongoing efforts to expand community capacity and grow service options for individuals with intellectual and developmental disabilities. DHS-DD also announced future plans aimed at growing the number of frontline staff who are trained to respond to behavioral support needs and the number of community agencies supporting individuals with high behavioral support needs. 


Welcome to the second and final week of Veto Session in Springfield. While we’re keeping a close eye, it’s important to note that there is a lot that we don’t know – there may not be any disability legislation addressed this week. It is quite likely that they will not focus on disability issues until January. Stay tuned! If there is an action item for your legislators, I will reach out with all the details.


Going Home Coalition

Going Home Coalition has recently engaged 2 amazing LEND interns and a volunteer to help fuel our advocacy initiatives. We are so grateful for their time and advocacy!

The University of Illinois Chicago Leadership Education in Neurodevelopmental and Related Disabilities Program (LEND) is a 1-year interdisciplinary graduate-level training program that prepares future leaders who will serve people with disabilities and their families.



Bridget Mary Brown is a long-term active member of the Going home Coalition as a self-advocate. She is involved in several organizations to advocate for people with disabilities and Down Syndrome.

She is 2nd Vice President of The National Association for People with Down Syndrome (NADS) and an actor in the simulation Lab at the University of Illinois at Chicago. (UIC).

“It is my great honor to be an intern for the Going Home Coalition working beside Carole Rosen and a partner through this LEND program, Claire. We are helping to bring people with disabilities out of State Operated Developmental Centers into the productive and inclusive community.”

One of Bridget’s dreams was to go to college. Bridget is enrolled at the university as a student through the COOP program which is an inclusive college program for people with disabilities.



Claire Zuch is a current graduate assistant working at the Cognition, Behavior, and Mindfulness clinic at the University of Illinois - Chicago.
She works clinically as well as conducts clinical research on language development in autistic children and explores the behavioral aspects of the stigmatization of autism. 

Her role as a LEND Trainee who is interning with the Going Home Coalition (GHC) will be to assist in gathering information and contacting legislators to help build future connections between legislators and GHC members to further the mission of GHC.



Shirley Sains is a mother of a bright and social 23-year-old daughter who has Spastic Quadriplegia Cerebral Palsy, seizure disorder, non-speaking, and CVI. 

She has been an advocate and mentor for people with Complex Communication Needs (CCN) like her daughter for many years. 

She has also been a board member and/or board chair for 18 years for the Center for Independence through Conductive Education in Countryside, Illinois which helps children and young adults with Cerebral Palsy (CP) develop life skills, motor function and an “I Can!” attitude. She is a passionate committed advocate and graduate of class 4 of Partners in Policymaking Leadership Training funded through The Illinois Council on Developmental Disabilities.



The IDD & Mental Health Conference is Now 2 days!

November 14-15, 2023

This virtual conference focuses on the intersection of intellectual and developmental disabilities and mental health. Click here for the flyer.


The Arc of Illinois Virtual Events

  • Seminario Web en Espanol | Enfoque en los Hermanos de Personas con Discapacidades del Desarrollo | November 13, 2023 | 5:30 - 6:30 pm | Register
  • Work Incentives Planning & Assistance (WIPA) program and More | November 14, 2023 | 12:00 - 1:00 pm | Register
  • Adapting The Holidays to Your Child with IDD | December 12, 2023 | 12:00 - 1:00 pm | Register


Ray Graham Association (RGA) is pleased to present a learning opportunity for families, educators and 
others in the community

This year, Ray Graham is resuming in person, and all are free of charge. Although geared towards families, they are also great learning opportunities for educators and other professionals. This year, the remaining date is November 16. Click here for the flyer.


Alliance and The Arc of Illinois Fall 2023 VIRTUAL Regional Training 

"Self-Advocacy, Rights, and YOU!" on Tuesday, November 28, 2023!

Self-Advocates, allies/professionals, and family members are invited to join the Illinois Self-Advocacy Alliance (The Alliance) and The Arc of Illinois for a day of learning and advocacy. 

The training is free and will begin promptly at 10am and end at 1.30pm; there will be a break for lunch from 12noon - 12.45pm.  The training will use the Zoom platform.

Register here.


The Arc of US Invites You to

Share Your Story to Help End Disability Discrimination in Health Care

Have You Ever:

  • Had a doctor discriminate against you or refuse to see you because of your disability?
  • Been unable to use medical equipment at doctors’ offices?
  • Had trouble accessing medical services because of your disability or gone without needed care?

Had your support person been excluded from your appointments?


The Arc of US Invites You to

Send a Message Now to Ask HHS to End Disability Discrimination in Healthcare

The US Department of Health and Human Services (HHS) is updating critical rules that address discrimination against people with disabilities in government-funded health care programs—and we have until November 13 to submit comments!


The Mindful Project is Recruiting Participants

The MindWalk project at the University of Illinois Chicago, which focuses on a Mindful Walking Intervention for Older South Asian Family Caregivers of People with Intellectual and/or Developmental Disabilities (IDD), is currently in need of participants. They are currently looking for South Asian family caregivers (50 years or older) caring for a person (of any age) with IDD like autism, Down syndrome, cerebral palsy & others who are interested in a mindful walking program. Click here for the flyer.


University of Illinois (UIC) and Great Lakes ADA Center to hold focus groups in November about experience with civic engagement

Researchers at the University of Illinois Chicago (UIC), along with the Great Lakes ADA Center, would like to invite you to share about your experiences with civic engagement in your local community. We are looking to hold focus groups in November in order to gather information about people with disabilities’ experiences on advisory boards or committees that focus on improving city accessibility (such as improving sidewalks, public transit, and public spaces). 

Click here for the flyer.

If you are interested, please email the coordinator of this project, Odile Carroll, at ocarro2@uic.edu



The Illinois Autism Task Force (IATF) Transition sub-committee is seeking 
parents/guardians’ feedback on their understanding of the high school (Secondary) transition process. The survey is designed for parents/guardians of children with autism (all ages-young adults) who have an IEP.

The survey will be available beginning September 1, 2023, ending December 1, 2023:

IDHS: IATF: Transition Sub-Committee Survey 2023 (state.il.us)

IDHS: IATF: Encuesta del subcomité de transición 2023 (state.il.us)


University of Illinois Adults with Autism and Health Services Research Study

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Autism Intervention Research Network on Physical Health (AIR‐P) grant, UT2MC39440. 

Click here for the flyer. 


Are you, or do you know, a Spanish-speaking
family member of a person who uses AAC?/¿Usted es o conoce a un familiar hispanohablante de alguien que usa la CAA?

Researchers at the University of Illinois at Chicago are conducting a study
to learn about the experiences and perspectives of Spanish-speaking family
members of people who use augmentative-alternative communication (AAC).

Investigadores de la Universidad de Illinois en Chicago están realizando un
estudio para conocer las experiencias y perspectivas de los familiares
hispanohablantes de personas que utilizan la comunicación aumentativa y
alternativa (CAA). 

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