Finding Respite Care

If you’re raising a child with special health care needs, you might find that "me time" is more fantasy than reality. Sure, you'd love some time to yourself, or one-on-one time with a spouse, partner, friend, or another child. But how can you find that perfect person to care for your child? And even then, can you trust someone else to provide just what your child needs?

Luckily, finding respite care — a well-deserved break from caregiving — with a skilled and caring person that you trust might be easier than you think.

What's Available?

The many types of respite care include:

• a caregiver who comes to your home for a few hours daily, weekly, or as needed
• drop-off day programs (at a school, health care facility, or faith-based or volunteer agency) that provide activities
• daily or weekly respite programs offered by a community-based agency, host family, residential facility, or sleepaway camp

Another option that families enjoy is respite care offered through parent "co-ops." This is when families take turns watching each other's kids. For example, you can take someone else's child for one day or evening a month, and that person can do the same for you. Support groups for families with your child's condition are a good place to meet other families.

You also might consider asking for help from extended family, friends, or neighbors, and give them the training they need to care for your child.

Where Can I Find Local Caregivers?

Special health care needs usually require care beyond what the average babysitter can offer. Here are some ways to find experienced caregivers:

• Ask your care team or hospital social worker about programs in your area.
• Contact advocacy groups in your area, like your state’s developmental disabilities agency (find a local chapter).Tell them what kind of care you need and get a list of providers that may include visiting nurses, childcare centers, and sleepaway camps.

These groups offer help and information, and may have chapters in your area:

• ARCH National Respite Network
• United Cerebral Palsy
• Easter Seals
• Family Voices
• The Arc

How Should I Interview Caregivers?

Once you've narrowed your search and decided on a person or program, do a telephone interview. Ask caregivers if they've had background and reference checks. Make a list of all your child's needs, from toileting to communicating, and make sure the caregiver has the skills to handle them. Ask to meet in person, and watch how the caregiver interacts with your child.

Call the applicant's references and ask about the caregiver. Were there things the caregiver did that they didn't like? Keep interviewing and asking questions until you find someone you feel truly comfortable with.

How Can I Pay for Respite Care?

Respite care can be costly, but there are programs that can help. They include:

• Medicaid waiver funding. Most children with a disability qualify for home and community-based Medicaid waivers that cover the cost of respite care. Waivers either pay for the cost of care or reimburse you for out-of-pocket costs. Contact your local department of developmental disabilities to see if your child qualifies for Medicaid waiver funding. To learn about programs in your state, go to Kids’ Waivers.
• Lifespan financial aid. Kids who do not qualify for a Medicaid waiver may be eligible for financial assistance for respite care through a State Lifespan Respite Grant, if it’s available in their state.
• Military childcare benefits. Some members of the military qualify for respite care as part of the childcare benefit. 

For help figuring out which respite services your child may be eligible for, talk to your social worker or contact your local Family Voices chapter.

Once you find respite care for your child, you’ll wonder how you ever lived without it. Having an extra set of hands so that you can run errands, go to an appointment, or just take a break works wonders for your mental health. You'll feel better and have more energy to do the things you need to do for your child and family.