Whether you hire a qualified individual or use a respite care agency, quality care can be costly. Rates may vary by region and state. Some types of care may also be more expensive than others — overnight care may be more expensive than care during the day, for example. In addition, care that may be routine to your family — such as trach care, ventilator care, g-tube and PICC line care — may be considered “skilled medical care” by respite care providers, and they may charge more for the services of a medically certified caregiver.
Luckily, the cost of respite care for disabled children and their families can be subsidized by government benefits — mainly through Supplemental Security Income, Social Security Disability Insurance, and Medicaid. Some providers or charities may also provide free or discounted emergency respite care for families in need, so definitely ask about these options when searching for a provider.
Supplemental Security Income (SSI)
This benefit, administrated by the Social Security Administration, makes monthly payments — which differ by state — to disabled children whose families meet certain income and financial asset restrictions. To qualify for SSI, a child must:
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be under 18, or under 22 if still in school (according to Social Security’s definition).
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meet Social Security’s definition of disability. The diagnoses included in this list are automatically qualifying, and may allow a child’s case to be fast-tracked for approval. Other disabilities will have to be reviewed by Social Security before benefits can be approved.
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have parents or guardians whose incomes and financial assets are under certain limits. These limits may vary according to how many people are in the household and other circumstances, but they are often fairly low (for example, a single parent supporting a disabled child might be disqualified if they earn more than about $3,000 a month).
Medicaid
Medicaid is a federal and state health insurance program for people with low income. In most states if a child receives SSI, they also qualify for Medicaid. However, if a child with disabilities does not qualify financially for SSI, they may still qualify for Medicaid in certain states.
Like private insurance, Medicaid covers physician care and prescription medications; unlike private insurance, Medicaid covers personal care assistants and other kinds of respite care.
Some states have waiver programs that allow disabled children to receive Medicaid even if their parents earn too much to qualify otherwise. Check with your local Medicaid office to find out your state’s rules, and ask in particular about “Katie Beckett” or “TEFRA” waivers. Other children may qualify under Medicaid expansion, also known as ACA or Obamacare.
Social Security Disability Insurance (SSDI)
This is a benefit that people pay into when they work. Your child may be eligible for benefits based on their parents’ work record, and depending on their disability, they may continue to receive these benefits in adulthood.
Your child will qualify if:
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You or your child’s other parent are receiving Social Security retirement or disability benefits, OR
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Your child’s other parent is deceased, but had a qualifying work history.
Further Reading:
- More ways to subsidize the costs of child care
- Tips on finding ways to pay for respite care
- The Social Security Administration’s guide to benefits for disabled children
