Respite Care Programs in Illinois: Free and Low-Cost Breaks for Family Caregivers

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Managing Editor · Communications degree, Universidad Católica Andrés Bello · 11 years helping families access government benefits

Illinois caregiver benefits

Last checked: May 18, 2026

If you care for someone every day, respite care means someone else covers care for a short time so you can rest, work, go to an appointment, or handle an urgent need. In Illinois, respite may come through the aging network, Medicaid home and community-based services, VA health care, adult day service, disability services, or a local voucher program.

Rules can change. Counties, managed care plans, waiver offices, and local agencies may use different names for the same kind of help. Confirm the current rule with the Illinois Department on Aging, Illinois Medicaid, DHS-DRS, the VA, or your local agency before you make a care plan.

Start here
Medicaid
VA
Phone script
Urgent help

Quick answer

In Illinois, the best first call for many older-adult caregivers is the Illinois Department on Aging Senior HelpLine at 1-800-252-8966. Ask for the caregiver support program, your local Area Agency on Aging, and a Care Coordination Unit screening for the Community Care Program if the person is age 60 or older.

If the person already has Medicaid waiver services or a Medicaid managed care plan, ask the care coordinator for respite, adult day service, or a care plan review. If the person is a Veteran, ask the VA Caregiver Support Team or VA social worker about in-home respite, adult day health respite, or nursing home respite.

Start here

1. Call the Illinois Senior HelpLine

Call 1-800-252-8966. Say: “I am an unpaid family caregiver in Illinois. I need respite care. Can you connect me with my local Area Agency on Aging, Caregiver Resource Center, or Care Coordination Unit?”

2. Ask for a respite screening, not only a brochure

Ask if the local office can screen you for the National Family Caregiver Support Program, a respite voucher, adult day service, the Community Care Program, or other local funds.

3. If Medicaid, VA, hospice, or disability services are already involved, call that worker too

Ask the Medicaid care coordinator, DHS-DRS counselor, VA social worker, hospice social worker, or case manager to add respite to the care plan or explain why it is not covered.

Main Illinois respite routes

Route	Who it may help	Where to start
Illinois Caregiver Support Program and local aging network	Unpaid caregivers of older adults, and some relative caregivers	Illinois Senior HelpLine, local Area Agency on Aging, or Caregiver Resource Center
Community Care Program and Persons who are Elderly waiver	Illinois residents age 60 or older who meet need and financial rules	Senior HelpLine, local Care Coordination Unit, or IDoA Provider Profile Search
DHS-DRS Home Services Program and disability waivers	People with severe disabilities, often under age 60 at application for the Persons with Disabilities waiver	DHS-DRS local office or DRS Hotline at 1-877-581-3690
Medicaid managed care or MLTSS	People enrolled in an Illinois Medicaid managed care plan who receive long-term services or waiver services	The plan care coordinator or member services number on the Medicaid plan card
IDHS respite services and Lifespan Respite	Some caregivers of people with intellectual or developmental disabilities, and some emergency respite cases	IDHS respite provider list or Illinois Respite Coalition
VA respite care	Caregivers of eligible Veterans enrolled in VA health care	VA Caregiver Support Team, VA social worker, or VA Geriatrics and Extended Care
Adult day service	Older adults who cannot safely stay home alone during the day	Community Care Program, IDoA Provider Profile Search, or local adult day service center
Medicare hospice respite	People on Medicare hospice when the caregiver needs a short rest	The hospice nurse or hospice social worker

Free and low-cost respite routes in Illinois

Respite care is short-term relief from caregiving. It may happen in the home, at an adult day service center, in a group setting, in a short-term residential setting, or in a nursing home or hospice facility for a short stay.

Who pays depends on the person’s age, disability, income, Medicaid status, Veteran status, and local funding. Some respite is free. Some is based on a care plan. Some may have a co-pay or limited grant amount. Some programs have waiting lists.

Do not assume one “Illinois respite program” covers everyone. Illinois has several doors. The right door depends on the person receiving care.

Important Illinois warning

Ask for the program name in writing. A local worker may say “caregiver support,” “adult day service,” “waiver service,” “voucher respite,” “lifespan respite,” “HSP,” “CCP,” or “MLTSS.” These names matter because each one may have different rules, forms, and appeal steps.

Area Agency on Aging route

For many Illinois families, this is the best first path. Illinois has local Area Agencies on Aging. They plan and connect services for older people in their regions. They are not always the direct provider, but they can point you to the right local office.

The Illinois Caregiver Support Program can connect family caregivers with information, help getting services, counseling, support groups, caregiver training, respite care, and limited extra services. It is tied to the National Family Caregiver Support Program, a federal Older Americans Act program.

You can also ask for your nearest Family and Caregiver Resource Center. These centers may help you find adult day service, respite for the caregiver, home-delivered meals, housework help, home changes, assistive devices, training, support, rides, legal help, and case management.

What to ask for

Ask for a caregiver assessment or respite screening. Ask if there are local respite vouchers, adult day service funds, caregiver support funds, or short-term emergency respite funds in your county.

Phone script

“Hi. I live in Illinois and I am caring for my [mother/father/spouse/relative/friend]. I need a break from care so I can rest and handle appointments. Can you screen us for caregiver respite, adult day service, the Community Care Program, and any local voucher funds? If you are not the right office, who should I call next?”

If the person is age 60 or older, also ask about a Community Care Program screening. That program can include adult day service, in-home service, emergency home response, and other supports when the person meets the rules.

Medicaid respite

Medicaid is often the main payer when someone needs ongoing help at home. Illinois Medicaid home and community-based services are meant to help eligible people receive care at home or in the community instead of in an institution.

In Illinois, Medicaid respite is not one simple benefit for every Medicaid member. It depends on the waiver, age group, disability group, and care plan.

Persons who are Elderly waiver and Community Care Program

The Illinois Persons who are Elderly waiver is part of the Community Care Program. It serves people age 60 or older who are at risk of nursing facility placement and meet Medicaid and care need rules.

The listed services include in-home service, adult day service, emergency home response, and automated medication dispenser service. Adult day service can give the caregiver a daytime break while the older adult receives supervision and services.

Start with the Senior HelpLine at 1-800-252-8966. After language choice, Illinois says to press #4 for Community Care Program help. You can also use the Illinois Department on Aging Provider Profile Search to find a Care Coordination Unit in your county.

DHS-DRS Home Services Program and disability waivers

If the person has a severe disability, the Illinois Department of Human Services Division of Rehabilitation Services may be the right door. The Home Services Program helps people with severe disabilities stay at home.

The Persons with Disabilities waiver lists services that include adult day care and respite. HFS says people who receive HCBS waiver services through an Illinois Medicaid managed care organization should contact their care coordinator about in-home service needs and referrals.

Call the DHS-DRS Hotline at 1-877-581-3690 or contact the local DRS office. Say that you need a Home Services Program screening and want to ask about respite or adult day care in the care plan.

Medicaid managed care and MLTSS

Some Illinois Medicaid members get long-term services through a managed care plan or Managed Long Term Services and Supports. If that is your case, call the plan first.

Ask for the assigned care coordinator. Ask for a care plan review. Use clear words: “The caregiver cannot keep providing the same hours without a break. We need respite, adult day service, or added support in the care plan.”

Have the Medicaid member ID number ready. If you call DHS-DRS directly and the person is in a Medicaid managed care plan, HFS says to have the plan name and the 9-digit member ID ready.

IDHS respite services and Lifespan Respite

IDHS says respite services can help reduce stress for regular caregivers of a person with intellectual or developmental disabilities. IDHS-funded respite may include group respite, in-home respite, residential respite, voucher respite, and the Lifespan Respite Program.

IDHS says voucher respite lets a family buy direct care support or special recreation programs through a provider agency. IDHS also says the Lifespan Respite Program can offer voucher support during a planned or unplanned emergency for caregivers of people of any age or disability who do not receive HCBS waiver support. The official IDHS page listed a maximum of $500 at the time this guide was checked.

Medicaid papers to gather

Medicaid card or application status
Managed care plan card, if any
Social Security number or case number, if you have it
Doctor notes, hospital discharge papers, or therapy notes
List of daily care needs, such as bathing, dressing, meals, transfers, medicine reminders, wandering, or unsafe time alone
Names and phone numbers for current case managers, care coordinators, DHS-DRS counselors, or waiver workers
Proof of income and assets if the person is applying for Medicaid long-term care help

For plain-English background, see Medicaid HCBS waivers explained. If the person may be over the income limit, read Medicaid spend-down. If long-term care Medicaid may be needed later, read Medicaid look-back period.

VA respite

If the person receiving care is a Veteran, do not stop with state programs. VA may have respite options through VA health care, the VA Caregiver Support Program, or VA Geriatrics and Extended Care.

VA describes formal respite as short-term paid help from a professional. VA lists in-home respite, adult day health respite, and nursing home respite. In-home respite means a home health agency worker comes to the Veteran’s home. Adult day health respite means the Veteran attends a program in the community. Nursing home respite means a short stay in a VA Community Living Center or a community nursing home.

Start with the VA Caregiver Support Team at the Veteran’s VA medical center. You can also ask the Veteran’s primary care clinic, VA social worker, or VA Geriatrics and Extended Care office.

VA phone script

“I care for a Veteran enrolled in VA health care. I need to ask about respite care. Can a VA social worker or Caregiver Support Team member screen us for in-home respite, adult day health respite, or nursing home respite?”

If the Veteran is not yet enrolled in VA health care, ask about enrollment first. If the Veteran or surviving spouse needs help paying for care, see VA Aid and Attendance.

Adult day care

Illinois often uses the term Adult Day Service. This can be a respite route when the person cannot safely stay home alone during the day.

The Illinois Department on Aging says Adult Day Service is for older adults who want to stay in the community but cannot be home alone during the day due to a physical, social, or mental impairment. It can also provide respite for family caregivers, especially those who work outside the home.

Services may include health monitoring, medicine supervision, personal care, activities, outings, lunch, and snacks. Some centers may serve people with Alzheimer’s disease or related disorders. Some may serve specific language or cultural groups.

Ask whether the center takes Community Care Program clients, Medicaid waiver clients, VA clients, private pay clients, or local grant-funded clients. Ask about transportation. Ask what happens if the person needs help with toileting, transfers, medicine reminders, wandering, diabetes care, or dementia behaviors.

You can compare care costs with the care cost calculator. You can also read respite care for caregivers for a broader planning guide.

How to ask for respite

When you call, be specific. Do not only say, “I need help.” Say what care you provide and what will happen if no break is added.

Step 1: Name the care problem

“I provide care every day. The person cannot be left alone because of falls, dementia, medicine needs, or personal care needs.”

Step 2: Ask for a real screening

“Can you screen us for respite, adult day service, caregiver support funds, Medicaid waiver services, or emergency respite?”

Step 3: Ask who pays

“Is this paid by Older Americans Act funds, Medicaid, a managed care plan, VA, hospice, a local grant, or private pay?”

Step 4: Ask what proof is needed

“What documents do you need from me, the doctor, Medicaid, the VA, or the managed care plan?”

Documents to gather before calls

Care recipient’s full name, date of birth, address, and phone number
Medicaid, Medicare, VA, and insurance cards
Managed care plan name and member ID
Power of attorney, guardianship papers, or written permission, if you have it
Medication list
Diagnosis list
Recent hospital, rehab, home health, or doctor paperwork
List of daily care tasks and unsafe times of day
Caregiver work schedule, medical appointments, or urgent family needs
Any denial letters or care plan notices

If the first answer is no

Ask why. A “no” may mean the wrong office, no current funding, the wrong program, missing papers, or the person does not meet that program’s rules.

Say: “Can you tell me the reason? Is there another respite fund, adult day service program, Medicaid waiver, VA option, hospice respite option, or emergency fund I should ask about?”

If it is a Medicaid managed care denial, ask for the denial in writing and ask about the plan’s appeal and grievance steps. If it is a Medicaid eligibility issue, ask how to appeal or reapply. If it is an aging-network funding issue, ask about a waitlist, another provider, or the next funding round.

For call help, use phone scripts. For paperwork help, use caregiver checklists.

If you need help this week

If you cannot safely keep providing care this week, say that clearly. Use the word unsafe if it is true.

If there is immediate danger, call 911.
If you may hurt yourself, the person you care for, or you feel you cannot stay safe, call or text 988. In Illinois, 988 can connect callers with a trained crisis worker.
If an older adult or adult with a disability is being abused, neglected, or exploited, call Illinois Adult Protective Services at 1-866-800-1409.
If the person is on hospice, call the hospice nurse or social worker and ask about Medicare hospice respite.
If the person is a Veteran, call the VA clinic or Caregiver Support Team and ask for urgent respite options.
If the person has Medicaid waiver services, call the care coordinator or DHS-DRS counselor and ask for an urgent care plan review.
If the person is in the hospital or rehab, tell the discharge planner: “I cannot safely provide care at home without more support or respite.”

Medicare hospice respite

Medicare hospice can cover short-term inpatient respite care when the usual caregiver needs rest, if the hospice team arranges it and the person meets hospice rules. Medicare says respite can be up to 5 days each time and can happen more than once, but only on an occasional basis.

Resumen en español

Si cuida a un familiar en Illinois y necesita un descanso, llame primero a la línea Senior HelpLine de Illinois al 1-800-252-8966. Pida ayuda para “respite care,” apoyo para cuidadores, Adult Day Service, o una evaluación del Community Care Program.

Si la persona tiene Medicaid, llame también al coordinador del plan o al trabajador del programa. Si la persona es Veterano, pregunte al equipo de apoyo para cuidadores del VA sobre cuidado de relevo en casa, programa diurno, o una estadía corta.

FAQ

Does Illinois have free respite care for family caregivers?

Sometimes. Free or low-cost respite may be available through the aging network, caregiver support funds, Medicaid waiver services, IDHS respite services, VA programs, hospice, or local grants. It depends on the person’s situation and local funding.

Who should I call first for respite in Illinois?

For an older adult, call the Illinois Senior HelpLine at 1-800-252-8966. Ask for your local Area Agency on Aging, Caregiver Resource Center, and Community Care Program screening.

Does Illinois Medicaid pay for respite?

It may, but not for every Medicaid member. Respite or adult day service may be tied to a waiver, a managed care plan, a care plan, or a disability program. Ask the Medicaid care coordinator or DHS-DRS counselor for a care plan review.

Can adult day service count as respite?

Yes. Illinois says Adult Day Service can provide respite for family caregivers while the older adult receives supervision and services during the day.

Can the VA help with respite in Illinois?

Yes, for eligible Veterans. VA lists formal respite options that can include in-home respite, adult day health respite, and nursing home respite. Ask the VA Caregiver Support Team or VA social worker.

What if I am burned out and need help now?

If there is danger, call 911. If you are in a crisis or afraid someone may be harmed, call or text 988. If there may be abuse, neglect, or exploitation of an older adult or adult with a disability, call Illinois Adult Protective Services at 1-866-800-1409.

About this guide

This guide was written for family caregivers in Illinois who need a practical first call, not a long policy lesson. It focuses on respite routes, public programs, care plan steps, documents, and what to say when asking for help.

Disclaimer

This is general information, not legal, tax, medical, or financial advice. Rules can change, and local offices may apply program rules in different ways. For legal or tax questions, talk with a qualified professional in your state.

Official sources used

About the author

Analic Mata-Murray

Managing Editor, CaregiverBenefits.org

🎓 BA Communications & Journalism 📋 11+ years in benefits navigation 🌎 Bilingual English / Spanish 🤝 Salvation Army volunteer translator

Analic Mata-Murray holds a Communications degree with a focus on Journalism and Advertising from Universidad Católica Andrés Bello. She has spent over 11 years as a volunteer translator for The Salvation Army, helping Spanish-speaking families access government programs, emergency aid, and poverty alleviation resources — often during the most difficult moments of their lives.

That experience taught her that the biggest barrier to getting help is not eligibility — it is understanding. Most families who miss out on benefits do not miss out because they do not qualify. They miss out because the system is written in a language nobody actually speaks. That is the problem she set out to fix at CaregiverBenefits.org.

As Managing Editor, Analic oversees all content on this site to make sure every guide is accurate, up to date, and written in plain English that a sixth grader could follow. Her specialties are community resources, Medicaid programs, housing assistance, and emergency aid — the exact programs that most caregivers need and most websites bury in jargon.