FAQs

IDD stands for Intellectual and Developmental Disabilities. These are disabilities that begin during the developmental period (usually in childhood, before age 22) and can affect learning, communication, mobility, self-care, and other daily living skills.

The best place to start is by contacting your local Independent Service Coordinator. They can help you understand what’s available and how to get started with eligibility assessments and applications. See our Get Started page for more information.

Illinois offers services through Medicaid waivers and state-funded programs, including:

• Home-Based Support Services (HBS)
• Children’s Residential Services
• Adult Residential Services including Supported Living Arrangements (SLA), Community

Integrated Living Arrangements (CILA), and Community Living Facilities (CLF)

• Community Day Services (CDS)
• Respite Care Services
• Employment and Training programs
• Behavioral Health Services and Supports

Use our Resource Index to search for specific services in specific regions of Illinois.

Most IDD services are funded through:

• Medicaid waiver programs
• State-funded programs
• Private pay or insurance (in some cases)

Your case manager can help you navigate applications and understand what funding options are available.

To qualify for I/DD services under Illinois’ Home & Community-Based Services (HCBS) waiver, you:

• Must be a U.S. citizen or qualified legal resident, living in Illinois
• Must meet Medicaid financial criteria (income/resource limits)
• Must require an institutional level of care (comparable to an ICF/IID), but not require 24‑hour nursing care
• Must undergo Pre-admission Screening (PAS) and coordinate through an Independent Service

Coordination (ISC) agency, which will confirm:

• You have a developmental disability or related condition
• You exhibit significant functional limitations in at least three major life areas (e.g., self‑care, communication, learning, mobility, self‑direction, independent living)
• You can be safely maintained in the community with a self‑directed service plan

PUNS stands for Prioritization for Urgency of Need for Services. It’s a statewide waiting list for Medicaid-funded IDD services. You must be on the PUNS list to be considered for long-term supports like group homes, day programs, or respite care.

      To get on the list:

• Contact your local Independent Service Coordination (ISC) agency
• They will conduct an intake interview and help determine eligibility

Find a link for your ISC agency on our Get Started page.

Wait times vary depending on urgency, age, need, and funding availability. Some families may wait several years, while others may be selected sooner under emergency or crisis criteria.

Yes, there are many private-pay options available throughout the state. See our Resources Index to search for the services you’re interested in.

Independent Service Coordination (ISC) agencies are your entry point for most IDD services in Illinois. They help:

• Enroll you in PUNS
• Assist with eligibility determinations
• Coordinate services and supports
• Conduct annual updates and monitor quality

 See our Get Started page for more information.

Yes. Adults with autism may qualify for IDD services if they meet eligibility requirements. Illinois does not have a separate autism waiver, but individuals with autism often access services through the Home & Community-Based Services (HCBS) Medicaid Waiver.

Yes, with the right supports. Options include:

• Supported living arrangements (SLA)
• Community Integrated Living Arrangements (CILAs)
• Community Living Facilities (CLF)
• Family-based or home-based support

Services can be tailored to help individuals develop skills and increase independence over time.

You can:

• Ask your case manager for a list of licensed or approved providers
• Visit programs in person
• Ask about staff training, activities, safety, and family communication
• Talk to other families if possible

If you are in urgent need, contact your local crisis intervention unit, emergency respite services, or your regional office. They can help with immediate or short-term support. There are also private-pay options throughout the state. See our Resources Index for more information.

The Division of Developmental Disabilities (DDD), part of the Illinois Department of Human Services (IDHS), oversees services for individuals with IDD in the state. They manage funding, policies, and the PUNS system.

Finding an ABA therapist under a Medicaid Managed Care Organization (MCO) can be difficult due to provider shortages and prior authorization requirements. Start by calling your MCO’s member services and asking for a list of in-network ABA providers. You can also contact your child’s primary care physician for a referral or ask your local Independent Service Coordination (ISC) agency or Early Intervention coordinator (if under age 3) for help. Some regional organizations, like Autism Speaks or Easterseals, offer directories or referrals as well.

In Illinois, parents of minor children typically cannot be paid caregivers through the standard Medicaid Home and Community-Based Services (HCBS) waivers like the Children’s Support Waiver. However, under certain programs such as the Medically Fragile Technology Dependent (MFTD) Waiver, a parent who is a licensed nurse (RN or LPN) may be paid to provide skilled nursing care. Some families pursue Consumer Directed Attendant Care (CDAC) in other states, but Illinois is more restrictive.

The Medically Fragile Technology Dependent (MFTD) Waiver supports children with significant medical needs who require skilled nursing. To apply, contact the Division of Specialized Care for Children (DSCC) at dscc.uic.edu or 1-800-322-3722. They will assess your child’s eligibility. This waiver can provide home nursing care, equipment, and case management.

Respite care provides short-term relief for primary caregivers. In Illinois, children with I/DD may access respite through:

•   PUNS enrollment (when selected for services)
•   State-funded respite programs (ask your local ISC agency)
•   The Lifespan Respite Program through ARCH
•   Certain Medicaid waivers (e.g., Children’s Support Waiver)

There are long waitlists and eligibility varies, so ask your ISC agency how to apply.

See Resources – IDD Navigator and search for “Respite”

For IEP support or school advocacy:

• Contact Equip for Equality (Illinois’ federally designated protection and advocacy agency)
• Use Family Matters Parent Training & Information Center
• Seek a trained special education advocate via COPAA (Council of Parent Attorneys and Advocates)
• Legal Aid or Disability Rights organizations can help with more formal complaints.

Start with your child’s primary care doctor or pediatrician, who can give referrals and prescriptions. You can also:

• Use Illinois Early Intervention (under age 3)
• Contact your MCO’s provider network (Medicaid)
• Search the Illinois Assistive Technology Program (for DME)
• Contact UIC’s Division of Specialized Care for Children for complex cases
• Use provider directories on hospital websites or Autism Speaks’ database

 First, read the denial letter and note the reason and deadline to appeal. Then:

• File a grievance or appeal with your MCO or insurer.
• Ask for a peer-to-peer review or external review if available.
• Contact the Illinois Department of Insurance or Health Care Bureau
• For Medicaid, call the HFS Health Benefits Hotline: 1-800-226-0768
• Equip for Equality or a legal aid group may help with appeals.

Options include:

• Ask your child’s primary care physician for a referral.
• Contact your Medicaid MCO or private insurance for in-network providers.
• Use state resources like CARES Line (1-800-345-9049) for crisis help or linkage to services.
• Local mental health centers, school social workers, or university clinics may also be helpful.
• Look into community mental health agencies or nonprofit providers for wraparound care.

IDD Navigator is a free, public online resource created by the Little City Foundation and funded by The Coleman Foundation. It helps families in Illinois find service providers and resources for individuals with intellectual and developmental disabilities.

Anyone in Illinois—individuals with IDD, parents, guardians, caretakers, and advocates—can use the website to locate providers and get guidance on available programs.

The site covers a wide array of supports, including:

• Residential programs
• Schools and day programs
• Employment services
• Family support & advocacy
• Assistance from state agencies (e.g. Department of Human Services)

Use filters like age, service type, region, and more to customize your search.

Head to the “Get Started” section. The first step is finding your Independent Service Coordinator (ISC), the case manager who will guide you through state services. Separate guides are available for children and adults.

Absolutely. Use filters for Age, Service Type, Region, Agency, Support, and Advocacy. This helps you customize results to match your loved one’s unique needs. Visit the Resources Index.

No. While it draws upon Illinois government resources like the DHS and DDD, IDD Navigator is independently managed by Little City Foundation. The site offers links and guidance, but is not responsible for providing services directly.

No. The site and all resources listed are completely free to use—for resource-gathering only. Service delivery is provided separately, often through Medicaid waivers or local providers dhs.state.il.us.

The site is actively maintained and provides a button for service providers to get listed on the site or to update service information.

IDD Navigator is powered by the Little City Foundation, with funding from The Coleman Foundation. It is designed as a comprehensive information hub—not a service provider. For assistance or issues, use the Contact link on the site here: Stay Informed – IDD Navigator.