What caregiving involves, and what it costs parents
Caring for a child with cerebral palsy adds a second job to parenting: lifting and positioning, stretching routines, feeding that may involve swallowing precautions or a feeding tube, equipment fittings, weekly therapy, and the applications that pay for all of it. Research on parents doing that work shows measurable effects on their own health, their work and their income.
The clearest measurements come from Ontario. Researchers surveyed 468 primary caregivers of children with cerebral palsy, drawn from 18 of the province’s 19 publicly funded children’s rehabilitation centers, and compared their answers with parents in two national Canadian health surveys that had asked identical questions. The results were published in Pediatrics in 2004.
| Reported by the parent | CP caregivers | Other parents |
|---|---|---|
| Back problems | 35.5% | 12.2% |
| Pain | 28.8% | 11.0% |
| Migraine headaches | 24.2% | 11.2% |
| Emotional problems | 25.3% | 13.7% |
| No chronic condition at all | 24.1% | 55.2% |
| Working for pay | 66.0% | 81.2% |
Income followed work. 40.9 percent of the caregiver households earned over $60,000 a year, against 51.4 percent of other parents, even though the two groups had about the same education. The authors read that gap as parents being less available to work for pay. They also noted a limit of their own data: parents who see doctors often for a child may simply have more chances to have their own conditions recorded.
A companion analysis of the same 468 families, published in Pediatrics in 2005, asked what drove those numbers. Three things predicted a caregiver’s physical and psychological health most strongly: the child’s behavior problems, the day to day demands of care, and how well the immediate family worked together. Help from extended family, friends and neighbors counted too, though less than the household itself. The caregivers in that study were mostly mothers. The authors recommended support for behavior management and daily care alongside the child’s rehabilitation, which is the gap that respite and paid caregiving programs are meant to fill.
If you are the one doing the lifting, tell your own doctor about back pain, poor sleep or low mood. Your child’s care team sees you every week. Your own physician may not know you are a caregiver at all.
Respite care
Respite care is short term care for your child by someone else, so you can sleep, work, attend to your other children or see your own doctor. In the United States it is paid for mainly through state Lifespan Respite programs, Medicaid home and community based services waivers, and local nonprofits.
Congress created the Lifespan Respite Care Program in 2006 and reauthorized it in 2020. The Administration for Community Living has given competitive grants to agencies in 39 states and the District of Columbia since 2009, to build coordinated state respite systems for caregivers of people of any age or disability. In practice, a state Lifespan Respite program is a place to call first: it knows the local providers and the funding your family may qualify for.
ACL also funds the ARCH National Respite Network, which runs the National Respite Locator. It lists home care agencies and state and community respite programs by location. ARCH advises contacting your state’s respite coalition or Lifespan Respite program before using the locator, and it states plainly that it does not check the background or references of anyone listed. Interview a provider as carefully as you would anyone else left alone with your child, and ask specifically about lifting, seizures and feeding if your child needs help with them.
Medicaid is the other main payer. Respite care is one of the standard services a state can offer under a section 1915(c) home and community based services waiver, along with personal care, case management and habilitation. A waiver is not an entitlement. Each state chooses how many people a waiver will serve and can limit it by age or diagnosis.
The result is a queue. KFF counted more than 710,000 people on HCBS waiting or interest lists in 2024, 73 percent of them people with intellectual or developmental disabilities, and an average wait of 40 months among the 32 states that reported one. Because the wait runs to years, apply for a waiver when you first hear about it, not when you need the hours. Our disability benefits guide covers how waivers, SSI and Medicaid eligibility fit together.
Getting paid as a family caregiver
Some states pay parents to care for their own child with cerebral palsy, through Medicaid programs that cover care beyond ordinary parenting. Whether your family qualifies depends on your state, on the specific waiver, and on whether your child is under or over 18.
Federal Medicaid rules treat a parent of a minor child, and a spouse, as a legally responsible relative: someone presumed to provide ordinary care without pay. A state may still choose to pay a legally responsible relative under a 1915(c) waiver for “extraordinary care,” which CMS defines as care exceeding what a parent would ordinarily do for a child of the same age without a disability or chronic illness, and which is needed to protect the child’s health and welfare and avoid institutional care. Each state has to describe in its waiver how it tells extraordinary care from ordinary care.
Few states use that option for young children. A December 2023 review by the National Health Law Program found that almost all states let family members be paid caregivers in certain programs, mostly 1915(c) waivers, but that very few pay a parent who is a guardian and even fewer pay parents of minor children. The rules can also differ between waivers inside the same state, so a developmental disability waiver may allow what a physical disability waiver does not.
Turning 18 changes the picture. The parent of an adult is not usually a legally responsible relative, even when the parent is also the legal guardian, which opens more programs to paying them. Self-directed Medicaid services, available through 1915(c) waivers and the 1915(i), 1915(j) and 1915(k) options, let the participant or a representative recruit, hire, train and supervise their own workers. One catch under Community First Choice, the 1915(k) option: a person acting as the individual’s legal representative cannot also be the paid caregiver.
Ask your child’s waiver case manager or your state Medicaid agency two direct questions. Does this waiver allow a legally responsible individual to be paid? If so, for which services and how many hours? The answers sit in Appendix C-2 of the state’s approved waiver application, and payments to a family caregiver can affect a parent’s own Medicaid eligibility if they are not excluded as difficulty of care payments, so ask about that as well.
Time off work under the FMLA
The Family and Medical Leave Act gives eligible employees up to 12 workweeks of unpaid, job-protected leave in a 12 month period to care for a child with a serious health condition. Group health coverage continues during the leave.
Eligibility has three parts, according to the Department of Labor. You must have worked for the employer for at least 12 months, have at least 1,250 hours of service in the 12 months before the leave starts, and work at a location where the employer has at least 50 employees within 75 miles. Private employers are covered if they had 50 or more employees in 20 or more workweeks of the current or previous year. Public agencies and public schools are covered regardless of size.
The leave does not have to be taken at once. When medically necessary, it can be taken in separate blocks or as a reduced schedule, which is how many parents cover a weekly therapy appointment or several weeks of recovery after orthopedic surgery. A son or daughter 18 or older still qualifies if a physical or mental disability leaves them incapable of self-care, so the protection continues into your child’s adulthood.
FMLA leave itself is unpaid. Some states run their own paid family leave insurance with separate eligibility rules, and your state labor department can tell you whether yours does.
Parent to Parent and family information centers
Two national networks are run by parents of children with disabilities for other parents. Parent to Parent USA programs match you with one experienced parent. Family-to-Family Health Information Centers help with insurance, Medicaid and school health plans.
Parent to Parent USA was set up in 2003 with Robert Wood Johnson Foundation funding and became a nonprofit in 2006. It supports statewide Parent to Parent programs, which match a parent who is seeking support with a trained volunteer Support Parent who has raised a child with special needs. Depending on the state program, the match can happen by phone, email, video or in person. A match is most useful in the first months after a diagnosis, or before a decision you have not faced before, such as a first orthopedic surgery or a first IEP meeting.
Family-to-Family Health Information Centers are funded by the Maternal and Child Health Bureau of the Health Resources and Services Administration. There are 59 of them: one in each state, one in Washington, D.C., one in each of five territories, and three serving American Indian and Alaska Native families. They are nonprofit, family led and family staffed, and they give information, training and peer support to families of children and youth with special health care needs. Typical help includes explaining insurance coverage, Medicaid and CHIP eligibility, and setting up a health plan for school. As of April 2026 the Congressional Research Service reported that the program’s federal funding runs through December 31, 2026, so check that your state’s center is still operating before you rely on it.
For national cerebral palsy organizations, online groups and local chapters, see our main cerebral palsy support guide.
How friends and relatives can help
With a person who has cerebral palsy, speak to them directly rather than to the parent or aide beside them, ask before you help, and treat their wheelchair, walker or crutches as part of their body. With their parents, make a specific offer instead of a general one.
Most of the practical rules come down to not taking over. The United Spinal Association’s disability etiquette guide has a short section on cerebral palsy, and its advice is concrete. Talk to the person, not their companion or aide. Ask before you help, because someone who uses crutches or a cane depends on their arms for balance, and grabbing an arm to assist can knock them over. Do not push, lean on or hang a bag on a wheelchair; its user considers it personal space. If a conversation will last more than a few minutes, sit so you are at eye level.
Speech takes patience. Many people with cerebral palsy have slurred speech or involuntary movements, and the same guide warns against discounting what someone says because of how they look or sound. Give your full attention and do not finish their sentences. If you did not understand, do not nod along; ask them to repeat it. A child or adult using a communication device needs the same time to compose an answer that you would want.
For the parents, “let me know if you need anything” puts the work of asking back on them. An offer with a day and a time is easier to accept: dinner on Thursday, a ride to soccer for a sibling, two hours on Saturday so a parent can go to their own appointment. Before you offer to stay alone with the child, ask the parent to show you how transfers, feeding and any seizure plan work, and do a visit with the parent at home first. In the Ontario research, support from extended family and friends was linked to better caregiver health, though less strongly than the household working well together, and the authors singled out help with daily care as one of the supports most likely to matter.
For what the years ahead look like for the person with cerebral palsy, from early intervention to adulthood, read our guide to living with cerebral palsy.
Caregiver support FAQs
In some states, yes, through a Medicaid waiver that pays for extraordinary care. Federal rules treat the parent of a minor child as a legally responsible relative, and very few states pay parents of minor children. After a child turns 18, a parent is usually no longer a legally responsible relative, and more programs allow a parent to be paid, often through self-directed services. Ask your state Medicaid agency or waiver case manager what your state’s waiver allows.
Start with your state’s Lifespan Respite program or respite coalition, then the ARCH National Respite Locator, which lists agencies and community programs by state. If your child is enrolled in a Medicaid home and community based services waiver, respite care may be a covered service. Check every provider’s background and training yourself, because the locator does not.
Yes, if you and your employer meet the eligibility rules. The FMLA gives eligible employees up to 12 workweeks of unpaid, job-protected leave in a 12 month period to care for a child with a serious health condition, and the leave can be taken in separate blocks when medically necessary, such as for therapy appointments or recovery after surgery. A son or daughter 18 or older still qualifies if a disability leaves them incapable of self-care.
Make a specific offer rather than a general one: a meal on a named night, a ride for a sibling, or a few hours of company once the parent has shown you the child’s routines. When you are with the child, speak to them directly, ask before you help, and do not touch or move their wheelchair or walker without asking.
