Articles
Finding Respite Care
Revised by: Carolyn Sewell-Roberts, LCSW
Cerebral Palsy (CP) Care at Nemours Children’s Health
If you have a child with special health care needs, you may find that "me time" is more of a fantasy than a reality. Sure, you'd love some time for yourself, or time alone with your spouse, partner, a friend, or your other child. But how can you find the ideal caregiver? And even then, could you trust someone else to give your child what they need?
Fortunately, finding a family support service (a caring, well-trained person to care for your child) to give you that much-needed break may be easier than you think.
What types of services are available?
There are many types of family support services, such as:
a person who comes to your home for a few hours a day, a week, or whenever you need them
programs where the person with special needs is brought (at school, a health center, or a voluntary or religious agency) that offer activities
daily or weekly family support programs offered by a community agency, a foster family, or an overnight camp
Another option is for families to benefit from the support offered by parent cooperatives. In this case, families take turns caring for other parents' children. For example, you can babysit for someone else's child one day or one night a month, and that person can do the same for you. Family support groups that include children with the same condition are a good place to meet other families.
You may also be able to ask family members, friends, or neighbors for help and provide them with the training they need to care for your child.
How can I find caregivers in my area?
Children with special health care needs often require more care than regular caregivers can provide. There are referral services that will help you find qualified and experienced caregivers:
Ask your child's medical team or social workers at hospitals in your area.
Contact advocacy groups in your area, such as your state developmental disabilities agency (find your local branch). Explain what type of care your child needs and obtain a list of providers, including home health nurses, child care centers, and overnight camps.
The following groups offer support and information, and may have local chapters in your area:
ARCH National Respite Network
United Cerebral Palsy
Easter Seals
Family Voices
The Arc
How should I interview candidates?
Once you've narrowed your search and decided on a person or program, conduct a phone interview. Ask the candidate about their background and request references. Make a list of all your child's needs, from toileting to communication, and make sure the caregiver has the necessary training to handle them. Tell them you want to meet them in person and observe how they interact with your child.
Contact any references the candidate gives you and ask questions about them. Ask if there was anything the candidate did that they disliked. Continue interviewing and asking questions until you find someone you feel truly comfortable with.
How can I pay for this service?
Family support services can be quite expensive, but fortunately, there are programs that can help. These include:
Medicaid Waiver Funds. Most children with disabilities qualify for Medicaid waivers that can cover the costs of family respite care. Waivers either pay the costs directly or reimburse the family for expenses previously paid. Contact your local department of developmental disabilities to find out if your child qualifies for these funds. To learn about programs in your state, contact Children's Waivers.
Lifespan Financial Assistance. Children who do not qualify for Medicaid may be eligible for financial assistance through a State Lifespan Respite Grant, if available in their state.
Advantages for military families. Some members of the Armed Forces are eligible for family support services. For more information, visit Child Care Aware of America or TRICARE, which provide health-related services to active members of the Armed Forces.
If you need help deciding what type of family support services your child is eligible for, talk to your social worker or contact your local Family Voices office.
Once you find a family support service to care for your child, you'll wonder how you ever managed without them. Having another pair of hands so you can run errands, meet up with others, or simply take a break will do a world of good for your mental health. You'll feel better and have more energy to do the things you need to do for your children and family.
Revision date: septembre 2021