To become a paid caregiver for a family member in Illinois, you enroll your relative in one of two state programs — the Community Care Program for adults 60 and older, or the Home and Community Based Services Waiver for adults with disabilities — pass a health care worker background check, and get hired directly by your family member as their personal assistant or individual provider. Both programs let the person receiving care choose who provides it, and in most cases that choice can be a relative.
The Two Programs That Pay Family Caregivers
The Community Care Program is run by the Illinois Department on Aging for older adults who might otherwise need a nursing home.1Illinois Department on Aging. Community Care Program Under its self-directed option, an eligible senior can hire a family member as their personal assistant to handle bathing, dressing, meals, housekeeping, and errands. One firm limit: a spouse cannot be hired as a CCP personal assistant.
The second path is the Home and Community Based Services Waiver for Adults with Disabilities, administered by the Department of Healthcare and Family Services.2HFS Illinois Department of Healthcare and Family Services. Persons with Disabilities – Home and Community Based Services Waiver Programs This Medicaid waiver serves people who need nursing facility-level care but want to stay home. Participants pick their own Individual Providers, and those providers can include family members. The HCBS waiver generally does not carry CCP’s spousal restriction, so it is often the option families look at when one spouse cares for the other.
Whether Your Family Member Qualifies
Community Care Program
For CCP, your relative must be at least 60 years old, an Illinois resident, and a U.S. citizen or eligible non-citizen. Non-exempt assets cannot exceed $17,500. Their home, car, and personal furnishings do not count toward that limit.1Illinois Department on Aging. Community Care Program They must also score at least 29 on the Determination of Need assessment, which measures how much help they need with daily activities and how much of that need is going unmet.
CCP requires applicants to apply for Medicaid, but they do not have to actually qualify for Medicaid to get CCP services.3Illinois General Assembly. Illinois Admin Code Title 89 Section 240.865 A Medicaid denial by itself does not block CCP.
HCBS Waiver for Adults With Disabilities
For the HCBS waiver, your relative must be a U.S. citizen or legal resident living in Illinois, meet Illinois Medicaid’s financial rules, and be assessed as needing an institutional level of care.4Illinois Department of Healthcare and Family Services. Home and Community Based Services Waiver Programs The cost of home-based waiver services also has to be equal to or less than what nursing facility care would cost.2HFS Illinois Department of Healthcare and Family Services. Persons with Disabilities – Home and Community Based Services Waiver Programs There is no minimum age beyond being an adult.
Whether You Qualify as the Caregiver
You must be of legal working age and authorized to work in the United States. You do not have to live with your family member, though living arrangements affect certain tax rules later on.
Every prospective caregiver has to pass a criminal background check under the Illinois Health Care Worker Background Check Act.5Illinois General Assembly. Health Care Worker Background Check Act 225 ILCS 46 You submit fingerprints electronically through a livescan vendor licensed by the Department of Financial and Professional Regulation, and those prints run against Illinois State Police and FBI records. The fingerprint submission has to happen within 10 business days of authorizing the check.
Convictions for violence, sexual assault, theft, identity fraud, or controlled substances are automatic disqualifiers. The state also checks the Health Care Worker Registry and the Adult Protective Service Registry for verified findings of abuse, neglect, or financial exploitation. A disqualifying record means you cannot be hired unless you obtain a waiver through the formal review process.
How to Apply Step by Step
Start with your local Care Coordination Unit, the community agency that handles CCP intake. You can find your nearest CCU through the Illinois Department on Aging or by calling the Senior HelpLine at (800) 252-8966.1Illinois Department on Aging. Community Care Program For the HCBS waiver, contact the Department of Healthcare and Family Services directly, or ask the CCU for a referral.
A case manager will schedule a home visit to run the Determination of Need assessment. The DON looks at cognitive functioning, the ability to handle daily activities like bathing, dressing, and eating, and how much of that need is currently unmet. For CCP, a score of 29 is the floor to qualify, and higher scores translate into more approved weekly hours.
Have these documents ready before the assessment:
- Proof of age (birth certificate or similar government document)
- Social Security number
- Proof of Illinois residency (utility bill, lease, or state ID)
- Recent bank statements and income verification
- Medical records from their physician supporting the need for ongoing care
As the caregiver, bring a government-issued photo ID, your Social Security number, and proof of your current address. After the assessment, the agency issues a formal notice of approval or denial listing the authorized services and weekly hours. Once approved, you finish hiring paperwork and enroll with the state’s fiscal agent so payment can start.
How Much You Get Paid
The CCP reimbursement rate for in-home services is $30.80 per hour.6Illinois Department on Aging. Current Rates Your take-home wage is lower than that number because payroll taxes, workers’ compensation insurance, and administrative costs come out first. How many hours you can bill each week depends on your relative’s DON score and the care plan the case manager builds.
HCBS waiver rates are published separately and vary by service type.7Illinois Department of Healthcare and Family Services. HCBS Rate and Fee Schedules They are generally comparable to CCP but differ by waiver and service category. In both programs, a fiscal intermediary handles payroll, tax withholding, and direct deposit, and you are typically paid biweekly.
Logging Hours With Electronic Visit Verification
Illinois requires all personal care and home health services to be tracked through an Electronic Visit Verification system. The state uses HHAeXchange, and as of March 2, 2026, providers under the Department on Aging are fully integrated.8Illinois Department of Healthcare and Family Services. Illinois Electronic Visit Verification
Each visit records six things: the type of service, who received it, the date, the location, who provided it, and the start and end times.9Medicaid.gov. EVV Requirements in the 21st Century Cures Act GPS is not required. Most caregivers clock in and out through a phone app or a landline system at the care recipient’s home.
Illinois offers an EVV exemption for certain live-in caregivers under the Division of Developmental Disabilities waiver programs.8Illinois Department of Healthcare and Family Services. Illinois Electronic Visit Verification If you live with the person you care for, ask your case manager whether the exemption applies. Not logging visits properly is the fastest way to have payments delayed or denied, so take the agency’s EVV training seriously.
Taxes on Caregiver Pay
Caregiver pay is income, and the IRS treats most family caregivers hired through self-directed programs as household employees. Two rules can sharply cut what you owe.
FICA Exemptions for Family Members
When your relative is the technical employer through a self-directed program, wages paid to a spouse, a child under 21, or a parent of the care recipient are not subject to Social Security and Medicare taxes, regardless of the amount. One narrow exception applies to a parent caring for their own child: the exemption does not apply if the child is under 18 or has a condition requiring adult personal care and the parent-caregiver is divorced, widowed, or living with a spouse who cannot provide that care. For other household employees, the FICA threshold in 2026 is $3,000 in annual cash wages.10Internal Revenue Service. Publication 926 (2026) Household Employers Tax Guide
The Live-In Caregiver Tax Exclusion
If you live in the same home as the person you care for, IRS Notice 2014-7 may let you exclude your entire Medicaid waiver payment from gross income. The IRS treats these as “difficulty of care” payments, which are not taxable when caregiver and care recipient share a home.11Internal Revenue Service. Certain Medicaid Waiver Payments May Be Excludable From Income The home has to be your actual residence, not somewhere you commute to for work. The exclusion applies whether you are related to the care recipient or not, and more than one provider in the home can claim it. A caregiver earning $25,000 a year in waiver payments who qualifies pays no federal income tax on that money. If your living arrangement is a gray area, talk to a tax professional familiar with Notice 2014-7 before filing.
How Caregiver Pay Affects SSI and SSDI
If you receive SSI, caregiver wages count as earned income and can reduce your payment. But there is a carve-out: if you are an ineligible spouse or parent living in the same household as the SSI recipient, and the payments come from a government program like Medicaid, those payments are excluded from income for SSI deeming purposes.12Social Security Administration. SI 01320.175 Deeming – In-Home Supportive Services Payments In that specific situation, your caregiver earnings will not cut your family member’s SSI check.
SSDI is different. It is not means-tested, so caregiver wages will not reduce your monthly benefit. If your earnings cross the substantial gainful activity threshold, though, Social Security may reopen the question of whether you are still disabled. Contact Social Security before you start work to see how your expected hours and pay interact with your disability status.
What to Do if Your Application Is Denied
A denial notice must state the reason and explain your appeal rights. For CCP, you can request a fair hearing; a hearing officer reviews the case and the agency’s assessment. Keep every medical record, DON result, and piece of correspondence, because those documents become the appeal.
For Medicaid-funded programs like the HCBS waiver, federal rules give you at least 90 days from the denial notice to request a state fair hearing. If your family member is already getting services and the agency wants to reduce them, request the hearing before the effective date of the reduction so the current service level stays in place while the appeal is pending. The Senior HelpLine at (800) 252-8966 can point you to legal help if you need it.