Can I Get Paid to Care for My Disabled Child in Illinois?

Yes, you can get paid to care for your disabled child in Illinois. The main path is the state’s Home Services Program, which lets a parent be hired as their child’s personal assistant at $19.50 an hour, rising to $20.00 on July 1, 2026. Two Medicaid waivers cover children with developmental disabilities or medically fragile conditions. Your child has to meet a disability and care-level threshold, and the household has to fit within Medicaid income and asset limits.

Which Illinois Programs Pay Parents

Three programs matter here, and the right one depends on your child’s diagnosis and age.

The Home Services Program (HSP), run by the Illinois Department of Human Services Division of Rehabilitation Services, is the most direct route. Participants hire, supervise, and employ their own personal assistants for help with household tasks, personal care, and doctor-approved health procedures. In many cases that PA can be a family member, including a parent.¹

The Support Waiver for Children and Young Adults with Developmental Disabilities covers ages 3 through 21 with intellectual or developmental disabilities who live at home and would otherwise be at risk of placement in an intermediate care facility. It pays for personal support, temporary caregiver relief, behavior intervention, home modifications, and training for unpaid caregivers.² Access usually runs through the Prioritization of Urgency of Need for Services (PUNS) list, which you get on by calling the DHS Division of Developmental Disabilities Hotline at 1-888-DD-PLANS. Being on PUNS does not guarantee services, and waits can stretch for years.³

The Medically Fragile, Technology Dependent (MFTD) Waiver serves children under 21 whose illness or disability would otherwise require hospital or skilled nursing care.⁴ It is administered through the Division of Specialized Care for Children (DSCC). Parents interested in becoming paid caregivers under this waiver should call their DSCC Care Coordinator at (800) 322-3722.

Who Qualifies

Eligibility has two gates: your child’s condition and your family’s finances.

Disability and Care Level

Your child must have a diagnosed severe disability expected to last at least 12 months or for life, and must need a level of care that would otherwise be delivered in a nursing facility, hospital, or intermediate care facility.⁵ For HSP, the state confirms this through a Determination of Need (DON) assessment; the child needs at least 29 total points, with a minimum of 15 in the “Need for Care” category.⁶

For the developmental disability waivers, qualifying conditions include intellectual disability and related conditions such as cerebral palsy or epilepsy that produce significant functional limitations in areas like self-care, mobility, learning, and independent living. The condition must have manifested before age 22.⁷

Income and Assets

These are Medicaid programs, so financial limits apply. For HSP, children under 18 and their families cannot hold more than $35,000 in assets. Adults 18 and older face a $17,500 asset limit, which is also the general Medicaid asset limit for medical cases regardless of household size.⁸

Income limits vary by program. Children’s Medicaid coverage through Family Assist reaches 318% of the federal poverty level, which works out to over $7,000 per month for a family of three. Families above standard Medicaid thresholds may still qualify through the Health Benefits for Workers with Disabilities program, which allows income up to 350% of the federal poverty level and assets up to $25,000.⁹ Both parent and child must be Illinois residents and U.S. citizens or legal aliens.

How Much Parents Earn

Personal assistants in HSP earn $19.50 per hour as of January 2026, with a negotiated increase to $20.00 per hour taking effect July 1, 2026.¹⁰ Your authorized hours depend on your child’s DON score and the service plan you and a DHS-DRS rehabilitation counselor build together. Higher assessed care needs generate more authorized hours.

Monthly pay varies a lot. A child authorized for 20 hours a week at $19.50 an hour generates about $1,560 a month before taxes. A child with more intensive needs can be authorized for significantly more.⁶

How to Apply

For HSP, submit a referral through the DHS Division of Rehabilitation Services online referral form or contact your local DRS office. A counselor will schedule a home visit to conduct the DON assessment.¹¹

For the developmental disability waivers, contact your local Independent Service Coordination agency to start the PUNS process. The DHS hotline at 1-888-DD-PLANS routes you to the right agency by ZIP code.³

For Medicaid itself, apply through the Application for Benefits Eligibility (ABE) system online or in person at a DHS Family Community Resource Center.¹² Have these ready before you start:

Medical records: diagnosis reports, treatment history, and functional assessments describing your child’s care needs
Financial documents: income verification and asset information for the household
Proof of Illinois residency for you and your child
A physician statement confirming that the care needed can be safely provided at home

The DON Assessment

The Determination of Need assessment decides whether your child qualifies for HSP and how many hours the plan authorizes. A DRS counselor administers it during a home visit and evaluates your child’s physical and mental condition, the help required, and resources already in place. It includes a cognitive functioning screen and detailed scoring of impairments and care needs.⁶

Prepare for the visit. If your child has variable functioning or intermittent symptoms, make sure the counselor hears about the worst days, not just how things look during the appointment. The scoring drives everything downstream, including how many paid hours you’ll receive.

If You’re Denied or Underauthorized

You can appeal a denial or an authorization you believe is too low. For medical, cash, and child care programs, the appeal must be filed within 60 calendar days of the decision. If day 60 falls on a weekend or holiday, you have until the next business day. There is no time limit to appeal when the agency failed to send a required written notice, act on a specific request, or notify you of a denial.¹³ Appeals go through the ABE portal or directly through DHS.¹⁴

Taxes on Caregiver Pay

Under IRS Notice 2014-7, Medicaid waiver payments you receive for caring for a disabled person in your own home may be excluded from your gross income. The IRS treats them as “difficulty of care payments” under Section 131 of the Internal Revenue Code.¹⁵¹⁶

The condition is that the care recipient lives in the caregiver’s home, meaning the place where you reside and carry out the routines of your private life. Most parents caring for a disabled child already meet this automatically. If two caregivers in the household provide services, each can exclude their own payments, and the exclusion applies to the whole payment amount even if the recipient contributes to the cost of care.¹⁵ A lower adjusted gross income can also improve eligibility for other income-tested benefits and credits. A tax professional can confirm you’re claiming the exclusion correctly.

Effect on Your Child’s SSI

If your child receives Supplemental Security Income, becoming a paid caregiver introduces a wrinkle. Social Security uses a process called deeming that counts part of parental income against a child’s SSI eligibility and benefit while the child is under 18 and living at home.¹⁷

Only a portion of your income is deemed, and several exclusions and deductions reduce the amount before it hits SSI. How Medicaid waiver caregiver payments interact with deeming is not always straightforward; if the payments qualify for the IRS difficulty-of-care exclusion, there is an argument for favorable treatment on the SSI side, but the rules can be complicated. Call your local Social Security office to work out the exact effect on your child’s benefit before you start getting paid. Deeming stops the month after your child turns 18, so a child who lost SSI because of deemed parental income may become eligible again then.¹⁷

1
Illinois Department of Human Services. Home Services Program
2
Illinois Department of Healthcare and Family Services. Support Waiver for Children and Young Adults with Developmental Disabilities
3
Illinois Department of Human Services. Illinois PUNS – Division of Developmental Disabilities
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Illinois Department of Healthcare and Family Services. People who are Medically Fragile, Technology Dependent
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Illinois Department of Healthcare and Family Services. Persons with Disabilities
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Illinois Department of Human Services. Program Eligibility Determination 2024
7
Legal Information Institute. Illinois Code tit 89 140.642 – Screening Assessment for Nursing Facility and Alternative Residential Settings and Services
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Illinois Department of Human Services. PM 07-02-01 – Asset Limits
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Illinois Department of Human Services. Workers’ Action Guide 25-03-02 – Medical FPLs
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Illinois Department of Human Services. HSP Rates and Fees
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Illinois Department of Human Services. Home Services Program
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Illinois Application for Benefits Eligibility. ABE Home Page
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Illinois Department of Human Services. PM 01-07-03 – Time Period to File Appeal
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Illinois Department of Human Services. ABE Portals – Apply for Benefits, Manage My Case (MMC), Appeals and the Partner Portal
15
Internal Revenue Service. Certain Medicaid Waiver Payments May Be Excludable From Income
16
Office of the Law Revision Counsel. 26 USC 131 – Certain Foster Care Payments
17
Social Security Administration. Spotlight on Deeming Parental Income and Resources