Yes, you can get paid for taking care of your autistic child. The most common route is a Medicaid Home and Community-Based Services (HCBS) waiver with a self-directed option, which lets the family hire a parent as the child’s paid personal care attendant. Hourly rates typically run between $10 and $25 depending on the state, and under an IRS rule many families never hear about, those payments are usually excluded from your federal taxable income.
How the Medicaid Waiver Pays You
HCBS waivers are authorized under federal law and run by each state. They fund home-based care for people who would otherwise need a nursing facility or group home, on the reasoning that supporting someone at home costs less and works better.
Many of these waivers include a self-directed (sometimes called consumer-directed) option. Under that setup, your family controls how the care dollars are spent, chooses caregivers, and sets schedules. A parent living with the child can be hired to help with daily activities like bathing, dressing, eating, and moving around safely.1Medicaid.gov. Leveraging Family Care
What you’ll earn depends on two things: your state’s reimbursement rate and the number of hours your child is approved for. An assessment measures your child’s level of need and sets the authorized hours and budget. Higher-support children qualify for more hours.
The Waiting List Problem
Demand for HCBS waivers exceeds supply almost everywhere. Most states run waiting lists, and the average wait across waiver types runs roughly two to three years. Autism-specific waivers can stretch longer, sometimes past five years. Apply the moment your child has a diagnosis, even if you don’t need services yet.
While you wait, ask your state Medicaid office whether your child qualifies for a different waiver category with a shorter list, or for interim services.2Centers for Medicare & Medicaid Services. State Medicaid Plans and Waivers
Your Income Probably Doesn’t Disqualify Your Child
A lot of families never apply because they assume they earn too much. Under HCBS waiver rules, your child’s Medicaid eligibility is generally decided as if the child were living alone in an institution. That rule, called institutional deeming, means parental income and assets typically aren’t counted against the child.3Medicaid.gov. Implementation Guide – Individuals Receiving Home and Community-Based Services Under Institutional Rules
A family with a solid household income can still have a child who qualifies. Don’t rule yourself out before applying.
The Payments Are Usually Tax-Free
Under IRS Notice 2014-7, Medicaid waiver payments you receive for caring for your child in your own home are generally excluded from federal gross income. The payments qualify as “difficulty of care” payments, which are tax-exempt under Section 131 of the Internal Revenue Code.4Internal Revenue Service. Notice 2014-7
Before 2014, the IRS said biological parents couldn’t take this exclusion. Notice 2014-7 reversed that and explicitly extended it to parents caring for their own children at home.4Internal Revenue Service. Notice 2014-7
Two conditions have to be met. The payments must come through a Medicaid waiver program, not a private arrangement, and the child has to live in your home. If both are true, you report the income and then exclude it from taxable income. The underlying statute allows the exclusion for up to 10 qualified individuals under age 19 in a single home.5Office of the Law Revision Counsel. 26 USC 131 – Certain Foster Care Payments
SSI Can Add a Monthly Check on Top
Supplemental Security Income isn’t a paycheck for caregiving. It’s a monthly cash benefit paid on your child’s behalf for basic needs like food, shelter, and clothing. For a household where one parent has stepped back from work, that check often matters as much as the waiver hours.
In 2026, the maximum federal SSI payment for an eligible individual is $994 per month. Some states add a supplement.6Social Security Administration. 2026 Cost-of-Living Adjustment (COLA) Fact Sheet
Three conditions have to be met: the child must have a qualifying disability, the family must have limited income, and the family must have limited resources. The child’s countable resources cannot exceed $2,000. Your home and one vehicle generally don’t count.6Social Security Administration. 2026 Cost-of-Living Adjustment (COLA) Fact Sheet
Unlike the HCBS waiver, SSI does count parental income through a process called deeming. As a rough 2025 guide, a single parent earning under about $3,993 per month in a household with no other children was likely to have a qualifying child, and two-parent households had a threshold of about $4,959. Those numbers rise with each additional child in the home and will move slightly upward for 2026 after the cost-of-living adjustment.7Social Security Administration. Understanding Supplemental Security Income SSI for Children
Job Protection If You Still Work
The Family and Medical Leave Act doesn’t pay you, but it keeps your job intact when you need time off. Eligible employees can take up to 12 weeks of unpaid, job-protected leave in a 12-month period to care for a child with a serious health condition. You qualify if you’ve worked for your employer at least 12 months, logged at least 1,250 hours in the past year, and your employer has 50 or more employees within 75 miles of your worksite.8U.S. Department of Labor. Fact Sheet #28 – The Family and Medical Leave Act
The protection continues into adulthood. If your adult child with autism is incapable of self-care due to disability, you keep the right to take FMLA leave. “Incapable of self-care” means the person needs active help with three or more daily living activities such as bathing, dressing, eating, or hygiene.9U.S. Department of Labor. Fact Sheet #28K – Using FMLA Leave to Care for an Adult Child with a Disability
Applying and What to Bring
For the Medicaid waiver, start with your state’s Medicaid office or department of developmental disabilities. Each state runs its own waivers, so the application, agency name, and contact point vary. Your state Medicaid website will list what’s available and how to apply.2Centers for Medicare & Medicaid Services. State Medicaid Plans and Waivers
For SSI, apply through the Social Security Administration online, by calling 1-800-772-1213, or at your local Social Security office. Expect a paperwork review and often an interview or medical assessment. Decisions can take weeks to several months.10Social Security Administration. SSI Application Process and Applicants’ Rights First-application SSI denials are common, and many families win on appeal with more medical evidence, so treat a denial as a step, not the end.
Gather the paperwork before you start. Missing documents cause most delays.
- Medical records: the formal autism diagnosis, treatment notes, and evaluations.
- Functional assessments: provider documentation of your child’s specific limitations with daily activities, used to set waiver hours.
- Financial records: recent pay stubs, tax returns, and bank statements for programs that consider family income and resources.11Social Security Administration. Documents You May Need When You Apply
- Identity and residency: proof of your child’s U.S. citizenship or lawful immigration status, plus a lease or utility bill for state residency.11Social Security Administration. Documents You May Need When You Apply
What Changes When Your Child Turns 18
The waiver-based paycheck doesn’t automatically stop at 18, but the SSI picture shifts. The Social Security Administration will redetermine eligibility during the year after your child’s 18th birthday using adult disability criteria (whether the person can engage in substantial gainful activity) rather than the childhood standard. Some individuals who qualified as children don’t qualify as adults.12Social Security Administration. Disability Redeterminations for Individuals Who Attain Age 18
Parental income deeming also stops when the child turns 18, marries, or moves out. A young adult who was over the SSI income threshold under their parents’ household may qualify on their own once only their personal income counts.7Social Security Administration. Understanding Supplemental Security Income SSI for Children For many families with autism, 18 is when SSI first becomes accessible.