By The Numbers
The data below provides a snapshot of the state’s population of people with I/DD and older Americans, Home and Community Based Services (HCBS) Waitlists, and the collective impact of the BADN collaboration.
State Disability Prevalence Date
Est Total State Disability Population (%):
12.6%
Est Total State Disability Population (#):
1,558,900
Est State Prevalence of Developmental Disabilities (%):
State Waiting Lists for Medicaid HCBS
Number of People with IDD on Medicaid HCBS Waitlist:
16,500
Number of People with Autism on Medicaid HCBS Waitlist:
N/A
Number of People who are Seniors and/or have Physical Disabilities on Medicaid HCBS Waitlist:
0
Total Number of People in State on Medicaid HCBS Waitlist:
16,500
State Aging & Disability Network
Number of Area Agencies on Aging/Aging & Disability Resource Centers:
13
Number of Centers for Independent Living:
20
Number of Developmental Disability Regions:
7
CITATION FOR COLUMN 1 DATA: The percentage of non-institutionalized males or females with any disability (all ages; 65+), cognitive disability (all ages; 65+), all races, regardless of ethnicity, across all levels of education in the United States. American Community Survey, 2023. Click here to view the source.
CITATION FOR COLUMN 1 DATA: Centers for Disease Control and Prevention. “Developmental Disability, Estimated Prevalence of Developmental Delay, All States, 2021-22. National Environmental Public Health Tracking Network. Click here to view the source.
CITATION FOR COLUMN 2 DATA: Kaiser Family Foundation. “Number of People Waiting for Medicaid Home Care (HCBS), by Target Population and Whether States Screen for Eligibility, 2024”. Click here to view the source.
*Not all state data is available or is N/A
Projects
Goal 1
Create a no–wrong–door expectation in the Aging and Disability systems whereby individuals with intellectual and developmental disabilities (I/DD) who are aging, and aging caregivers, can be connected to needed services across networks seamlessly.
Highlights/Milestones Achieved
- Created goals and a work plan.
- Worked with BADN Technical Assistance (TA) team to create a survey for the Aging and Disability Network to understand the needs for training, education, and resources for case managers and service providers in both the Aging and Disability service systems. The team received 131 responses (55 from providers of developmental disabilities services; 59 from the aging network; 12 from providers of both aging and disability services, and 5 other entities).
- Worked with BADN TA to create a survey for individuals with intellectual and developmental disabilities (I/DD) who are aging and aging caregivers to understand their unmet needs for support. The caregiver survey resulted in 125 responses; the survey for individuals with I/DD is still ongoing.
- Included I/DD engagement in the Multi-Sector Plan on Aging
- With the collaboration from the NACDD grant, expanded collaboration between I/DD and Aging to three additional grants/projects.
IDHS: PUNS snapshot as of 10/1/25
PUNS (waiting list) – 131 individuals are 60+ (we don’t track physical disabilities)
PUNS (waiting list) – 7923 individuals report having autism on the waiting list
State Co-Leads
Margaret Cooch
IDHS-DDD Chief of Staff
Illinois Department of Human Services
Jennifer Hebel
Special Assistant for Research
Illinois Department of Aging
Kimberly Mercer-Schleider
Director
Illinois Council on Developmental Disabilities
State Alliance Teams
The Illinois State Alliance Team included leaders from:
- Illinois Department of Human Services, Division of Developmental Disabilities
- Illinois Department of Aging (including APS)
- Illinois Department of Human Services, Division of Rehabilitation Services
- Illinois Council on Developmental Disabilities
- University of Illinois Chicago
- AgeOptions and I4A
- Esperanza
- Dementia Friendly Illinois (Illinois Cognitive Resources Network)
- Self Advocacy Alliance
- The Arc of IL
- Chicagoland Autism Connection
- Family Caregiver Coalition