Yes, you can get paid to care for your disabled child in most states, and the usual route is a Medicaid Home and Community-Based Services (HCBS) waiver that lets a parent serve as the paid caregiver. If your child is a veteran, the VA runs a separate stipend program. One catch surprises most parents: while your child is a minor, you can generally only be paid for “extraordinary” care that goes beyond what any parent would ordinarily do for a child that age. Pay typically runs $10 to $27 per hour depending on the state and program.
Medicaid HCBS Waivers
HCBS waivers are the main funding source for parent caregivers. They let states provide in-home services to people who would otherwise need institutional care, and each state designs its own program, so eligibility, covered services, and whether parents can be paid all vary.
Your child generally needs to meet two tests. The first is Medicaid financial eligibility. The second is an institutional level of care, meaning the disability is severe enough that without home-based support, your child would need placement in a nursing home, hospital, or group home. States determine this through a functional assessment that looks at daily activities like eating, bathing, mobility, communication, and self-direction.
Many states run “self-directed” or “participant-directed” versions of these waivers. Under a self-directed model, you or your child’s representative chooses the caregivers, sets schedules, and manages the care plan within an approved budget. Most families designate the parent as the paid caregiver. A fiscal intermediary, sometimes called a financial management service, handles payroll, tax withholding, and Medicaid billing so you’re not filing quarterly employment paperwork on your own.
Waiting Lists
Enrollment is often capped. Recent national data shows more than 800,000 people on HCBS waiver waiting lists across 41 states, with average waits around 39 months. Some states move faster; others stretch past five years for certain waiver categories. Contact your state Medicaid agency or developmental disabilities office early, because getting on the list is the first step even when no slot is immediately open.
The Extraordinary Care Rule for Minors
Federal Medicaid rules treat parents of minor children as “legally responsible individuals” who already have a legal duty to care for their kids. Because of that duty, parents of minors can only be paid through HCBS waivers for “extraordinary care,” not for the routine help any parent would provide to a child of the same age.
Extraordinary care means assistance that goes well beyond typical parenting. Suctioning a tracheostomy, managing a ventilator, performing catheterizations, administering tube feedings on a medical schedule, repositioning a child every two hours overnight to prevent pressure sores, or providing intensive behavioral support that requires specialized training all qualify. Helping a ten-year-old get dressed or making meals does not, because those are things parents ordinarily do for children that age.
When a state does allow parents of minors to be paid, CMS requires the state’s waiver documents to spell out which legally responsible individuals may be paid, what services they can furnish, how the state distinguishes extraordinary from ordinary care, and what safeguards ensure payments only go toward services actually rendered. States must also cap the paid hours to account for the ordinary care a parent would provide regardless.
The restriction loosens significantly when your child turns 18. At that point, you’re generally no longer considered a legally responsible individual under state Medicaid definitions, and the extraordinary care requirement typically falls away. Families approaching that transition often see a jump in available paid hours.
What the Pay Looks Like
Rates in self-directed programs generally fall between $10 and $27 per hour nationally, with most states landing in the $12 to $20 range. Some states use daily or monthly stipends instead, particularly for structured family caregiving arrangements. Your approved hours come out of your child’s clinical assessment: more intensive needs, more funded hours.
Electronic Visit Verification
If you’re paid through Medicaid for personal care services, you’ll need to comply with Electronic Visit Verification (EVV). Under federal law, states must use EVV systems that electronically record six data points for each visit: the type of service, who received it, who provided it, the date, the location, and the start and end times. In practice, you’ll clock in and out through a phone app or automated system before and after each shift.
Some states offer exemptions from real-time clock-in for live-in family caregivers, since you can’t “arrive” at your own home. These exemptions vary by state and usually require documentation that you share a residence with your child. Even with an exemption, you’ll still need to log hours through whatever alternative your state approves. Noncompliance can result in denied claims and lost pay, so learn your state’s process from day one.
VA Caregiver Support for Veteran Families
If your disabled child is a veteran, the VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) offers a separate stipend. It’s narrower than a Medicaid waiver but can pay more for families that qualify.
The veteran must have a service-connected disability rated at 70% or higher (individual or combined), be enrolled in VA health care, have been discharged or have a medical discharge date, and need at least six continuous months of in-person personal care services. You as the caregiver must be at least 18 and either a family member or living with the veteran full-time.
The monthly stipend is calculated from the federal GS-4, Step 1 pay scale for the veteran’s locality. The 2026 base GS-4, Step 1 salary is $31,103 per year before locality adjustments, and the stipend has two levels:
- Level One pays the monthly base rate ($31,103 ÷ 12, roughly $2,592) multiplied by 0.625, producing about $1,620 per month at the base rate. Locality pay generally pushes that higher.
- Level Two, for veterans determined unable to sustain themselves in the community, pays the full monthly rate of roughly $2,592 at base, again higher with locality adjustments.
Primary family caregivers may also receive health coverage through CHAMPVA if they lack other coverage, plus at least 30 days of respite care per year for the veteran. The veteran and caregiver apply together using VA Form 10-10CG, available online, by mail, or in person.
How Caregiver Payments Are Taxed
Caregiving pay is generally taxable income, but there’s an important exception for Medicaid waiver payments that can save you thousands each year.
The Medicaid Waiver Income Exclusion
Under IRS Notice 2014-7, Medicaid waiver payments you receive for caring for someone who lives in your home are excludable from gross income. The IRS treats these as “difficulty of care” payments under Section 131 of the Internal Revenue Code. Because most parents caring for a disabled child share a household with them, the exclusion applies broadly. Payments for care provided outside your shared home don’t qualify.
If you’ve already filed returns reporting these payments as income, you can file amended returns to claim a refund, generally going back three years from the original filing date.
FICA and FUTA
Even when Medicaid waiver payments are excluded from income tax, they may still be subject to Social Security and Medicare (FICA) taxes depending on your employment relationship. A family employment exemption often helps: under federal law, domestic service performed by a parent employed by their son or daughter is generally exempt from FICA. The exemption doesn’t apply if your child is a surviving spouse or divorced individual with a minor child at home who requires care. For federal unemployment (FUTA) tax, payments to a parent for services are not subject to FUTA regardless of circumstances.
Whether these exemptions apply depends on how your state’s program structures the employer relationship. If the fiscal intermediary is the employer of record rather than your child, the family exemption may not apply the same way. Confirm the setup with a tax professional in your first year as a paid caregiver.
Protecting Your Child’s Benefits
Being paid as a caregiver doesn’t directly affect your child’s Medicaid eligibility in most cases. If your child receives Supplemental Security Income (SSI), watch resource limits carefully. SSI caps countable assets at $2,000 for an individual, and caregiver payments flowing into a joint account or building up household resources could push your child over that threshold and suspend SSI.
ABLE Accounts
An Achieving a Better Life Experience (ABLE) account is one of the strongest tools for protecting benefit eligibility while building savings. Starting in 2026, individuals whose disability began before age 46 can open one, up from the previous cutoff of 26.
For 2026, up to $20,000 per year can be contributed from all sources combined. If your child works and doesn’t participate in an employer retirement plan, an additional $15,650 can be contributed from their earnings. The first $100,000 in an ABLE account is disregarded entirely for SSI resource purposes. Amounts above $100,000 count toward SSI eligibility but don’t affect Medicaid, SNAP, housing assistance, or Social Security Disability Insurance.
ABLE funds can pay for qualified disability expenses including housing, transportation, assistive technology, education, and health care costs not covered elsewhere. If caregiver pay would otherwise build up savings that jeopardize benefits, an ABLE account preserves both the savings and the eligibility.
Your Own Social Security Credits
One benefit that’s easy to miss: paid caregiving earnings can count toward your own Social Security record. Parents who leave the workforce to care for a disabled child often end up with gaps that reduce their eventual retirement or disability benefits, and paid caregiving fills them.
In 2026, you earn one Social Security credit for every $1,890 in covered earnings, up to four credits per year, so earning at least $7,560 during the year maxes out your annual credits. If your caregiving hours generate that much, you’re building toward the 40 credits needed for retirement eligibility while doing work your child needs anyway.