As a parent raising a child with a disability, 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. Read on for resources available to help you find quality, low-cost care.
Why You Need a Break
When your child has special needs, handing over responsibility can be a real challenge. You might feel as if you are the only person who can do the job, and doubt that anyone else could meet all of your child's needs. But remember, you're not superhuman. There's only so much you can give before you will feel mentally, emotionally, and physically drained. That's why it's a necessity — not a luxury — to take breaks from time to time.
When you take time off to recharge, you'll be able to give more and enjoy doing it. And your child will benefit as well. Kids learn that they can count on others for help. They can form new friendships, experience new environments or people, and have fun.
So, once you're ready to get help, how do you do it?
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 of kids with special needs 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 giving them the training they need to care for your child.
Finding Local Care
Kids with special needs usually need care beyond what the average babysitter can provide. Referral services are available to help you find those skilled caregivers:
- The Lifespan RespiteCare Program, a federally funded grant program, assists states with improving access to respite care and may provide financial assistance. The program is offered in many states and the District of Columbia. Contact the ARCH National Respite Network and Resource Center to see if there's a program in your state. If not, there might be a State Respite Coalition that can help.
- Find private respite programs in your area through the ARCH National Respite Network. Tell them what kind of care you need and get a list of providers that may include visiting nurses, childcare centers, and sleepaway camps.
- Other groups in your area that may offer respite care include United Cerebral Palsy, Easter Seals, and local chapters of The Arc.
Once you've narrowed your search and decided on a person or program, do a telephone interview. Ask if caregivers have had background and reference checks. When interviewing possible caregivers, ask to meet them in person. Make a list of all your child's needs, from toileting to communicating, and make sure that the caregiver has the skills to handle each task. Watch how he or she interacts with your child.
Call the applicant's references and ask about the caregiver. Was he or she helpful? 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 to Pay for It
Respite care can be costly, but luckily there are programs out there to help. If your state has a Lifespan program, call and ask for information on financial aid. Most children with special needs qualify for home and community-based Medicaid waivers that can cover the cost of respite care. Many programs have waiting lists for the waivers, so it's important to apply early.
A few states get funds through Title 5 block grants, which is money from a federal program that's designed to help children and families with special needs. The ARCH National Respite Network or your state's Family to Family Health Information Center or state Family Voices chapter might be able to put you in touch with this program.
Some members of the military qualify for respite care as part of the childcare benefit. For example, the Navy's Exceptional Family Member Program grants 40 hours of respite care per month to families caring for children with special needs. For details, visit Child Care Aware of America or TRICARE, which provides health benefits for active-duty service members.
Finding quality respite care at a cost you can afford might take a little time. But once you do, you'll wonder how you ever managed without it. Having an extra set of hands so that you can run errands, go to an appointment, or just take a break to do something nice for yourself will work wonders for your mental health.
And when you're happier, you'll have more energy to do the things you need to do for your child and family — and that makes everyone happy.
Reviewed by: Jill Kagan, MPH, and Larissa Hirsch, MD
Date reviewed: June 2015