Illinois caregiver benefits guide
Last checked: May 18, 2026
Illinois Medicaid home and community-based services can help some people get care at home or in a community setting instead of a nursing home, hospital, or other institution. These programs are called HCBS waivers.
Each Illinois waiver has its own rules. The right first call depends on age, disability, diagnosis, care needs, and whether the person already has Medicaid or a Medicaid managed care plan.
Quick answer
Illinois has several Medicaid HCBS waivers. They may cover in-home help, adult day services, respite, home changes, emergency response systems, transportation-related supports, and other services for people who meet strict medical and financial rules.
For an older adult, start with the Illinois Department on Aging Senior HelpLine or the local Care Coordination Unit. For a person under 60 with a severe disability, start with DHS Division of Rehabilitation Services. For developmental disability services, start with the local Independent Service Coordination agency and ask about PUNS.
Illinois rules can change
Rules can change. Counties, managed care plans, waiver contractors, Care Coordination Units, Independent Service Coordination agencies, and state offices may use different names for the same program. Confirm current rules with official Illinois sources before you act on a deadline, spend down, appeal, or caregiver payment decision.
Main programs and where to start
| Program or route | Who it may help | Where to start |
|---|---|---|
| Persons who are Elderly Waiver / Community Care Program | Adults age 60 or older who are at risk of nursing facility care and can be cared for safely at home with services. | Call the Illinois Department on Aging Senior HelpLine or ask for the local Care Coordination Unit. |
| Home Services Program waivers through DHS-DRS | People with severe disabilities, brain injury, or HIV/AIDS who need help at home and meet waiver rules. | Contact the local DHS Division of Rehabilitation Services office and ask for Home Services Program intake. |
| Adults with Developmental Disabilities Waiver | Adults age 18 or older with an intellectual or developmental disability who may need ICF/IID level of care. | Meet with the local Independent Service Coordination agency. Ask about PUNS and waiver eligibility. |
| Children and Young Adults Developmental Disabilities Waivers | Children and young adults ages 3 through 21 with intellectual or developmental disabilities. | Call the Developmental Disabilities Helpline or the local Independent Service Coordination agency. |
| Medically Fragile, Technology Dependent Waiver | Children who need hospital or skilled nursing facility level care because of serious medical needs. Some who enroll before age 21 may stay with the program after age 21. | Contact the University of Illinois Chicago Division of Specialized Care for Children. |
| Supportive Living Program Waiver | Adults age 65 or older, or adults ages 22 to 64 with a physical disability, who need a supportive living setting. | Contact a Supportive Living Program provider directly. If the person has Medicaid managed care, also call the plan care coordinator. |
| Managed Long Term Services and Supports | Certain people with both Medicare and full Medicaid who receive waiver services or live in long-term care settings. | Call the Medicaid managed care plan care coordinator. Ask how waiver services and long-term services are handled. |
What an HCBS waiver is
HCBS means home and community-based services. A waiver is a Medicaid program that can pay for certain long-term care supports outside an institution.
In plain English, the state is saying: if the person meets the rules, Medicaid may pay for home or community care instead of only paying for care in a nursing home, hospital, or other facility.
An HCBS waiver is not the same as regular Medicaid. A person may need both Medicaid financial eligibility and a separate care assessment. The assessment checks whether the person needs a high level of care and whether the person can be cared for safely at home or in another approved community setting.
For a plain-English national overview, see Medicaid HCBS waivers explained. If income or assets are blocking Medicaid, also read Medicaid spend down and the Medicaid look-back period.
Main waivers in Illinois
Illinois HFS lists nine HCBS waivers. HFS is the state Medicaid agency, but other agencies run the day-to-day work for several waivers.
Persons who are Elderly Waiver
This waiver is tied to the Illinois Department on Aging Community Care Program. It serves people age 60 or older who are at risk of nursing facility placement. The person must meet Medicaid and care need rules, including a Determination of Need assessment.
Services can include care coordination, in-home service, adult day service, emergency home response, and automated medication dispenser service. Start with the Senior HelpLine or your local Care Coordination Unit.
Home Services Program waivers through DHS Division of Rehabilitation Services
The Home Services Program helps people with severe disabilities remain at home. It includes the Persons with Disabilities Waiver, Persons with Brain Injury Waiver, and Persons with HIV or AIDS Waiver.
DHS says it is working to merge these three waivers into a new Disabled Persons Waiver. The target date has been moved to July 1, 2027. DHS says current Home Services Program services will continue and current customers do not need to act because of the merger plan.
Developmental disability waivers
Illinois has waiver routes for adults with developmental disabilities and for children and young adults with developmental disabilities. These are operated by the Illinois Department of Human Services Division of Developmental Disabilities.
The first step is usually the local Independent Service Coordination agency. For many families, PUNS is the waiting list and planning database for developmental disability waiver services.
Medically Fragile, Technology Dependent Waiver
This waiver helps people with special health care needs who would otherwise need hospital or skilled nursing facility level care. The operating agency is the University of Illinois Chicago Division of Specialized Care for Children.
Services may include respite, specialized medical equipment and supplies, environmental changes, family training, in-home shift nursing, CNA services, nurse training, and related supports.
Supportive Living Program Waiver
This waiver is for a supportive living setting, not regular care in a private home. It may help adults age 65 or older, or adults ages 22 to 64 with a physical disability, who meet nursing facility level of care and other rules.
Services are tied to apartment-style supportive living. They may include meals, personal care, medication oversight, emergency call systems, housekeeping, laundry, and 24-hour response staff.
Services that may help caregivers
Each waiver has its own service list. The person does not get every service just because they qualify. Services must be approved in the care plan.
Services that may help a caregiver include:
- Personal care. Help with bathing, dressing, grooming, eating, toileting, movement, and other daily tasks.
- Homemaker or in-home service. Help with meals, laundry, cleaning, shopping, errands, and routine household tasks when tied to the person’s care needs.
- Adult day service. Care and supervision in a community setting during part of the day.
- Respite. Temporary care that gives the regular caregiver a break or backup during a crisis.
- Home changes. Ramps, grab bars, door changes, shower changes, or other approved changes that help the person remain safe at home.
- Emergency response systems. Devices that can call for help when the person has a health or safety need.
- Special equipment and supplies. Equipment that helps with daily care, safety, or medical needs when approved by the program.
- Transportation-related supports. Some waivers include transportation or vehicle changes. Ask which type is allowed under the person’s waiver.
- Caregiver training or counseling. Some developmental disability and medically fragile services include training for unpaid caregivers.
If the main problem is caregiver burnout or no backup care, also see respite care for caregivers and caregiver checklists.
Can family caregivers be paid through a waiver?
Sometimes. It depends on the program, the care plan, the provider model, and whether the family member meets worker rules. Do not assume a family caregiver can be paid until the Illinois agency, plan, or provider confirms it in writing.
Community Care Program
Illinois Department on Aging says In-Home Service providers in the Community Care Program may choose to hire a family member, including a spouse, power of attorney, representative payee, legal guardian, friend, or neighbor if the person meets qualifications, passes a background check, completes required training, and agrees to provider supervision.
Important: not all In-Home Service providers employ family members as home care aides. Ask the Care Coordination Unit for providers that allow this.
Home Services Program
The Home Services Program has a Personal Assistant option. DHS says Personal Assistants are selected, employed, and supervised by the customer. They can help with household tasks, personal care, and some health care procedures if a doctor allows it.
If you are a spouse, adult child, relative, or friend, ask DRS if you can enroll as the person’s Personal Assistant or Individual Provider. Ask what forms, background checks, training, timesheets, and limits apply.
Developmental disability waivers
Some developmental disability waivers list self-direction assistance, personal support, temporary assistance, and caregiver training. That does not always mean a family member can be paid directly.
Ask the Independent Service Coordination agency: “Can a family member be a paid provider under this person’s waiver and service plan?”
Medically Fragile, Technology Dependent Waiver
This waiver lists skilled and nursing-related services. Illinois also lists nursing by a legally responsible adult as a service. This is a very specific route and may require nursing licensure, plan approval, and other rules.
Confirm the rules with the Division of Specialized Care for Children before counting on payment.
For a broader guide, read Can I get paid to be a caregiver? You can also use the paid caregiver quiz to sort the likely routes before calling.
Waitlists and priority
Illinois waitlist rules are not the same for every waiver.
Developmental disability services and PUNS
PUNS stands for Prioritization of Urgency of Need for Services. It is the Illinois database for people who want or need developmental disability waiver services.
PUNS has two categories: Seeking Services and Planning for Services. Illinois says selections are based on the person’s cumulative length of time in the Seeking Services category, as funding is available. Being on PUNS does not guarantee waiver services.
If the person is unsafe, losing housing, at risk of abuse or neglect, or the caregiver can no longer provide care, tell the Independent Service Coordination agency right away. Ask if crisis criteria or another urgent review applies.
Older adults and Community Care Program
The official pages reviewed for this guide do not give one simple public wait time for the Persons who are Elderly Waiver or Community Care Program. Delays may come from assessment timing, Medicaid status, care plan approval, or finding an available provider.
If someone tells you there is no service available, ask whether the person is denied, waiting for an assessment, waiting for Medicaid, or waiting for a provider. Those are different problems.
Home Services Program
The official Home Services Program pages reviewed for this guide do not give one public statewide wait time. If you are told to wait, ask your DRS contact what step is pending and whether you can send missing records now.
How to apply
There are usually two tracks: Medicaid financial eligibility and waiver service eligibility. A person may need both.
Step 1: Apply for Medicaid if the person does not already have it
Use Illinois ABE, the official Application for Benefits Eligibility site, to apply for Medical benefits. You can also ask for help through a local Family Community Resource Center.
If the person has medical bills, nursing home bills, or high monthly care costs, ask about Medicaid spend down. Keep copies of bills and notices.
Step 2: Ask for the right waiver screening
Call the right agency based on the person’s situation:
- Age 60 or older: ask the Illinois Department on Aging Senior HelpLine for Community Care Program screening and the local Care Coordination Unit.
- Severe disability under 60: ask DHS Division of Rehabilitation Services for Home Services Program intake.
- Brain injury or HIV/AIDS: ask DHS-DRS about the specific Home Services Program waiver route.
- Developmental disability: ask the Independent Service Coordination agency about PUNS, eligibility screening, and waiver services.
- Medically fragile or technology dependent child: ask UIC Division of Specialized Care for Children about the waiver.
- Supportive living: contact the Supportive Living Program provider and, if the person has a managed care plan, the plan care coordinator.
Step 3: Ask for the assessment and care plan
The state or its contractor will check care needs. The person may be asked about bathing, dressing, eating, toileting, walking, memory, supervision, falls, behavior, medical treatments, hospital stays, and caregiver availability.
Be clear. Do not understate the help needed on a bad day. If the person cannot be left alone, say that.
Phone script
“Hi, I am calling for my family member who lives in Illinois. They need help at home with daily care and may need Medicaid home and community-based services. I need to know which waiver or program fits, how to request a level of care assessment, and what documents you need. If this is not your office, please tell me the exact office I should call.”
Documents to gather
- Medicaid, Medicare, and managed care plan cards
- Social Security number or Medicaid recipient number, if available
- Photo ID and proof of Illinois address
- Doctor names, diagnoses, hospital records, therapy notes, and medication list
- Proof of income, bank accounts, life insurance, and other assets
- Recent medical bills, home care bills, nursing home bills, and pharmacy costs
- Power of attorney, guardianship papers, or authorized representative forms, if any
- A written list of daily help needed, falls, wandering, missed medicines, unsafe cooking, toileting needs, and overnight care needs
- Any denial letter, waitlist letter, care plan, or reduction notice
If the person already has a Medicaid managed care plan
Call the plan and ask for the care coordinator. Say, “I need help with long-term services and supports and a waiver referral.”
For some dual Medicare-Medicaid members, long-term services may run through HealthChoice Illinois managed care. HFS says MLTSS customers receive some long-term services and supports, plus some mental health and transportation services, from their HealthChoice Illinois plan. Other services may be covered by Medicare or Medicaid fee-for-service.
If the plan denies, reduces, or delays a service, ask for the appeal process and the State Fair Hearing rights. Keep every notice.
If denied or waitlisted
A “no” can mean many things. It may mean the person is not financially eligible for Medicaid. It may mean the person did not meet level of care. It may mean the agency needs more records. It may mean the service is approved but no provider is ready.
Do this before you give up
- Ask for the reason in writing. A phone answer is not enough if benefits are denied, reduced, stopped, or delayed.
- Ask what rule was used. Ask whether the issue is Medicaid financial eligibility, medical level of care, safety at home, cost, missing documents, or provider availability.
- Ask for appeal rights. The notice should tell you how to appeal and the deadline. Follow the notice deadline.
- Send missing records fast. If the state asks for documents, send them by the deadline on the letter. Keep proof.
- Ask for another route. If one waiver is not right, ask whether another waiver, Community Care Program service, Home Services Program service, managed care service, respite, adult day, or VA benefit may fit.
Illinois ABE has an online appeals page. DHS also lists an appeals line and Bureau of Hearings information. Managed care members may have to start with the health plan appeal process before a later hearing step. If the case is urgent, ask the plan or agency about an expedited appeal.
If the household is also looking at veteran benefits, see VA Aid and Attendance. For care costs, use the care cost calculator. For tax questions, see caregiver tax deductions.
Common problems that slow the case
- Calling Medicaid only and not asking for the waiver or long-term care assessment.
- Calling the wrong office for the person’s age or disability group.
- Describing only good days during the assessment.
- Missing a document deadline from ABE, DHS, HFS, the managed care plan, or the waiver agency.
- Assuming a family caregiver can be paid without asking the program and provider.
- Not asking for a written notice when services are denied, reduced, or stopped.
What to do if the first answer is no
Call again and be specific. Ask: “Is this a denial, a waitlist, or a referral problem?” Then ask for the exact next step.
If the person is older, ask the Care Coordination Unit about other Community Care Program options and whether family-member hiring is possible through any In-Home Service provider in the area.
If the person has a disability and is under 60, ask DRS if the person should be screened for Home Services Program, and ask whether a Personal Assistant option could fit.
If the person has a developmental disability, ask the ISC to update PUNS, explain the category, document urgent risks, and screen for other supports while waiting.
If you need help making the call, use caregiver phone scripts.
Resumen en español
Illinois tiene varios programas Medicaid HCBS para ayudar a algunas personas a recibir cuidado en casa o en la comunidad. El programa correcto depende de la edad, discapacidad, diagnóstico, nivel de cuidado y elegibilidad de Medicaid.
Para una persona de 60 años o más, empiece con la línea Senior HelpLine del Departamento de Envejecimiento de Illinois. Para una persona menor de 60 años con una discapacidad grave, pregunte por el Home Services Program de DHS-DRS. Para discapacidad del desarrollo, pregunte por la agencia Independent Service Coordination y PUNS.
FAQ
Does Illinois have one Medicaid waiver for all home care?
No. Illinois has different waivers for older adults, people with physical disabilities, brain injury, HIV/AIDS, developmental disabilities, medically fragile children, and supportive living.
Is the Community Care Program the same as the elderly waiver?
The Persons who are Elderly Waiver is part of the Illinois Department on Aging Community Care Program. The Care Coordination Unit can explain whether the person may qualify for Medicaid waiver-funded services or another Community Care Program route.
Can an adult child be paid to care for a parent in Illinois?
Sometimes. In the Community Care Program, some In-Home Service providers may hire family members if rules are met, but not all providers do. In the Home Services Program, the Personal Assistant option may allow the customer to choose and employ a worker. Ask the agency to confirm the rule for your case.
What is PUNS?
PUNS is Illinois’ database for people who want or need developmental disability waiver services. It has Seeking Services and Planning for Services categories. Being on PUNS does not guarantee services.
What if Medicaid says the person has too much income?
Ask about Medicaid spend down and other eligibility rules. Do not move money or give away assets without advice. Transfers can cause problems under Medicaid rules.
Who should I call first?
For age 60 or older, call the Illinois Department on Aging Senior HelpLine. For severe disability under 60, call DHS-DRS. For developmental disability, call the local ISC agency or DD Helpline. If the person has a Medicaid managed care plan, also call the plan care coordinator.
About this guide
This guide was written for family caregivers who need a first path into Illinois Medicaid home and community-based services. It focuses on official state and federal sources and avoids private program claims that are not confirmed by Illinois.
Official sources used
- Illinois HFS: Home and Community Based Services Waiver Programs
- Illinois HFS: Persons who are Elderly Waiver
- Illinois Department on Aging: Community Care Program
- Illinois Department on Aging: In-Home Service
- Illinois DHS-DRS: Home Services Program
- Illinois DHS-DRS: Home Services Program waiver merger update
- Illinois HFS: Persons with Disabilities Waiver
- Illinois HFS: Persons with Brain Injury Waiver
- Illinois HFS: Persons with HIV or AIDS Waiver
- Illinois HFS: Adults with Developmental Disabilities Waiver
- Illinois HFS: Support Waiver for Children and Young Adults with Developmental Disabilities
- Illinois HFS: Residential Waiver for Children and Young Adults with Developmental Disabilities
- Illinois HFS: Medically Fragile, Technology Dependent Waiver
- Illinois HFS: Supportive Living Program Waiver
- Illinois DHS-DDD: PUNS
- Illinois DHS-DDD: PUNS FAQ
- Illinois DHS: Division of Developmental Disability Services
- Illinois HFS: Managed Care Programs
- Illinois HFS: Managed Long Term Services and Supports Enrollment
- Illinois HFS: ABE Benefits
- Illinois ABE: Apply for and manage benefits
- Illinois ABE: Appeals
- Illinois DHS: Grievances and Appeals
- Medicaid.gov: Illinois Waiver Factsheet
Disclaimer
This is general information, not legal, tax, medical, or financial advice. For legal or tax questions, talk with a qualified professional in your state.
