How to Get Paid as a Family Caregiver in Illinois: Programs and Pay

You can get paid as a family caregiver in Illinois through one of three Medicaid-funded home care programs: the Home Services Program for working-age adults with physical disabilities, the Community Care Program for people 60 and older, and the Developmental Disabilities waivers for people with intellectual or developmental disabilities. Hourly pay ranges from the state minimum wage of $15.00 up to $24.50 for Direct Support Professionals in the Chicago region, with Home Services Program Personal Assistants earning $19.50 as of January 2026 and $20.00 starting July 2026. Which program applies, and whether you personally can be the paid caregiver, depends on your relative’s age and diagnosis and on your relationship to them.

Pick the Right Program for Your Relative

The program is chosen based on the person receiving care, not the caregiver. Start here before anything else.

Home Services Program (Working-Age Adults with Physical Disabilities)

The Home Services Program (HSP), run by the Illinois Department of Human Services, Division of Rehabilitation Services (DRS), lets adults with severe physical disabilities hire their own Personal Assistants (PAs) to help them remain at home.¹ Under this consumer-directed model, your relative picks, supervises, and can fire their PA, which is what makes hiring a family member workable.

Community Care Program (Age 60 and Older)

The Community Care Program (CCP), run by the Illinois Department on Aging, serves Illinois residents age 60 or older who have non-exempt assets of $17,500 or less and who score high enough on a needs assessment to be considered at risk for nursing home placement.² Unlike HSP, CCP allows any family member — including a spouse — to serve as a paid caregiver, but you have to be hired and supervised by an in-home service agency, pass a background check, and complete 24 hours of pre-service training.³

Developmental Disabilities Waivers

Adults with intellectual or developmental disabilities, including autism, may qualify for the Adults with Developmental Disabilities Waiver, administered through the DHS Division of Developmental Disabilities (DDD).⁴ Family members can work as Personal Support Workers (PSWs), either hired directly by the person receiving services through a Financial Management Services (FMS) agency, or hired and supervised through a PSW agency.³

Which Relatives Can Be Paid

The rules on paid family caregivers differ sharply by program, and getting this wrong wastes months.

Under the Home Services Program, adult children, siblings, and other adult relatives generally qualify to be hired as PAs. DRS will not pay family members who already have a legal duty to provide care, which excludes three categories: a spouse of the person receiving services, a parent of a minor child receiving services, and a minor child of the person receiving services.

Under the Community Care Program, any family member, including a spouse, can be hired. The trade-off is the formal agency hiring, training, and supervision process.³

Under the DD Waiver, family members can work as PSWs by direct hire through an FMS agency or through a PSW agency. Agency-based PSWs must complete approved pre-service training and pass background checks before starting.³

Across all three programs, you must be at least 18 and pass a fingerprint-based criminal background check. A disqualifying conviction will block employment unless you obtain a waiver.⁵

What You’ll Earn

Pay depends on the program and, in some cases, on where in the state you live.

Home Services Program. Personal Assistants earn $19.50 per hour starting January 1, 2026, rising to $20.00 per hour on July 1, 2026. You are the common-law employee of the care recipient, but a fiscal intermediary handles payroll, tax withholding, and related paperwork.

DD Waiver. As of January 2026, the base wage for a Direct Support Professional (DSP) is $21.30 per hour statewide and $24.50 per hour in the Chicago metro region.⁶ If you work through a PSW agency rather than as a direct hire, the agency sets your wage within the rate the state pays it.

Community Care Program. Wages are set by the in-home service agency and must meet the $15.00 Illinois minimum wage. They vary by agency and region.

The number of hours you can bill is tied directly to the care recipient’s approved service plan. A case manager or rehabilitation counselor assesses need and authorizes a specific number of weekly hours. You cannot bill above that cap.

What Your Relative Needs to Qualify

Before you can be paid, the person you’re caring for has to qualify. Three areas matter.

Functional Need

Illinois uses a Determination of Need assessment that evaluates Activities of Daily Living (eating, bathing, grooming, dressing, transferring, and continence) and Instrumental Activities of Daily Living (meal preparation, managing money, housework, laundry, and getting around outside the home).⁷ For the HCBS waivers, your relative’s needs must reach a “nursing facility level of care,” meaning a nursing home would be the alternative if home care weren’t available.⁸

Financial Eligibility

For 2026, Illinois’s Aged, Blind, and Disabled Medicaid category caps monthly gross income at $1,330 for an individual or $1,803 for a couple, with non-exempt assets (not counting a home, car, or personal furnishings) of no more than $17,500.⁹ Working people with disabilities may qualify through Health Benefits for Workers with Disabilities, which allows income up to 350 percent of the federal poverty level and up to $25,000 in non-exempt assets.¹⁰

Residency and Citizenship

Your relative must live in Illinois and be a U.S. citizen or qualifying legal immigrant. Non-pregnant adults must be citizens or legal permanent residents who have been in the country at least five years.¹⁰

How to Apply

The application starts with the care recipient. Which agency you contact depends on the program:

Home Services Program: Contact your local DRS office, which will conduct an assessment and develop a service plan.¹
Community Care Program: Contact the Department on Aging Senior HelpLine or your local Area Agency on Aging. A Care Coordination Unit schedules the Determination of Need assessment.¹¹
DD Waiver: Contact an Independent Service Coordination (ISC) agency. Expect a waitlist.³

After initial contact, an assessor visits the home to evaluate the recipient’s living situation, physical limitations, and specific care needs. If your relative qualifies, the assessor and recipient jointly develop a service plan that spells out what services are authorized and how many hours per week. You then go through the caregiver hiring process: background check, any required training, and enrollment with a fiscal agent or provider agency. If the application is denied, your relative has the right to appeal, so keep copies of all paperwork, assessment scores, and correspondence.

The DD Waiver Waitlist

Approval doesn’t always mean services start right away. The DD Waiver has limited enrollment slots, and Illinois uses the Prioritization of Urgency of Need for Services (PUNS) system to manage the queue. PUNS has two categories: “Seeking Services” for people who currently need support, and “Planning for Services” for people who may need support in the future. When funding becomes available, selections are made based on cumulative time in the Seeking Services category.¹² Wait times can stretch for years. Register as early as possible, and while you wait, check whether HSP or CCP might cover some of the same services now.

Electronic Visit Verification on Every Shift

Federal law requires Illinois to use an Electronic Visit Verification (EVV) system for all personal care and home health services. For every shift, you’ll log six data points: the type of service, who received it, the date, your identity, the location, and the exact times you started and stopped.¹³

Illinois uses an “Open Choice” model, so different programs use different technology. DDD Personal Support Workers use the ACES$ app or telephony system. Other programs use the HHAeXchange platform, with a mobile app and a phone-based check-in option. The system captures GPS at the start and end of your visit, not continuously, and Illinois does not allow biometric data, photos, or recordings.¹³ Skipping check-ins is one of the fastest ways to lose approved hours or trigger a compliance review.

Taxes on Your Caregiver Pay

This is where many family caregivers leave money on the table. If you live in the same home as the person you care for, your Medicaid waiver payments may be completely excludable from federal gross income under IRS Notice 2014-7. The IRS treats them as “difficulty of care” payments under Internal Revenue Code Section 131, meaning you don’t owe federal income tax on them and they shouldn’t appear on your W-2 as taxable wages.¹⁴

The exclusion only applies when the care recipient lives in your home under the recipient’s plan of care. If you provide care in the recipient’s home but don’t live there yourself, the payments are taxable. Vacation pay and other non-care payments aren’t excludable either.¹⁵ You also can’t exclude payments for care of more than five people aged 19 or older, or more than ten people under 19.

FICA and Family Relationships

When the care recipient is your employer, as in consumer-directed programs, household employment tax rules apply. For 2026, Social Security and Medicare taxes kick in once cash wages reach $3,000 for the year. Federal Unemployment (FUTA) tax applies if the care recipient pays total cash wages of $1,000 or more in any calendar quarter.¹⁶

Family relationships can eliminate some of these obligations. If the care recipient is your spouse, wages paid to you are exempt from FICA. If the care recipient is your child, wages paid to you as a parent are also generally exempt.¹⁷ Federal income tax withholding on household employee wages isn’t mandatory; it only happens if both parties agree to it.¹⁶

Protecting the Family Home Under the Caregiver Child Exception

After a Medicaid recipient dies, the state can seek reimbursement for long-term care costs from the recipient’s estate, and that can include a claim against the family home. Federal law carves out a protection for family caregivers. If you’re an adult child who lived in your parent’s home for at least two years immediately before they entered a nursing facility, and your care allowed them to stay home longer than they otherwise could have, the state cannot recover against the home while you continue to live there.¹⁸ A similar protection exists for siblings who lived in the home for at least one year before the recipient’s institutionalization.

Documenting your caregiving is critical if you ever need to invoke this exception. Keep records of when you moved in, the care you provided, and any communications with DRS, the Department on Aging, or Medicaid confirming your role. The state will require proof of both residency and that your care genuinely delayed institutional placement.

1
Illinois Department of Human Services. Home Services Program (HSP)
2
Illinois Department on Aging. Community Care Program
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Illinois Department on Aging. In-Home Care – Support for Caregivers
4
Medicaid. IL Adults with Developmental Disabilities Waiver (0350.R05.00)
5
Legal Information Institute. Ill. Admin. Code tit. 77, 395.171 – Health Care Worker Background Check
6
Illinois Department of Human Services. DDD Rate Table – Effective January 1, 2026
7
Illinois General Assembly. 89 Ill. Adm. Code 240.715 – Determination of Need
8
Illinois Department of Healthcare and Family Services. Home and Community Based Services Waiver Programs
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Illinois Department on Aging. 2026 Illinois Medicaid Income Standards and Resource Limits
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Illinois Department of Healthcare and Family Services. Medical Programs
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Illinois Department on Aging. Support for Caregivers – What Is This Program?
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Illinois Department of Human Services. Illinois PUNS – Division of Developmental Disabilities
13
Illinois Department of Human Services. Electronic Visit Verification Program Manual
14
Internal Revenue Service. Certain Medicaid Waiver Payments May Be Excludable From Income
15
Internal Revenue Service. Notice 2014-7 – Treatment of Qualified Medicaid Waiver Payments
16
Internal Revenue Service. Publication 926, Household Employer’s Tax Guide
17
Internal Revenue Service. Topic No. 756, Employment Taxes for Household Employees
18
Office of the Law Revision Counsel. 42 USC 1396p – Liens, Adjustments and Recoveries, and Transfers of Assets