Respite Services for Children with Disabilities
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What is Respite Care?
Respite care gives your family short-term relief, or time off, from direct caregiving for your child with disabilities or special health care needs. A respite care provider is a paid and trained provider for children who have complex needs, either because of a disability or a chronic condition. However, your family, friends or other paid or non-paid providers can also give you a break.
Is Respite Care the same as Personal Care Services?
No. Respite care is not the same as personal care services. Personal care services help your child with activities of daily living like feeding, toileting, bathing, dressing and preparing meals. Personal care services are covered by your child’s ForwardHealth card, while respite care, on the other hand, is covered by other programs. And, Medicaid requires that personal care services be done in the home, while respite care can be done in your home or out in the community. To learn more, see our Family Voices Fact Sheet Medicaid Personal Care Services.
How Can I Pay for My Child’s Respite Care?
State and county programs including the Children’s Community Options Program (CCOP) and the Children’s Long-Term Support (CLTS) Program have funds available for respite care. To be eligible for these programs your child needs to meet program requirements including: having a severe disability, being under the age of 21 and living in your home.
To learn more about the CCOP go to dhs.wisconsin.gov/ccop/index.htm
To learn more about CLTS Waivers go to dhs.wisconsin.gov/clts/index.htm
Your family may also qualify for some short-term or emergency respite from your local, or county, respite care program. The Respite Care Association of Wisconsin (608.222.2033 or respitecarewi.org) can help your family find programs in your area, and offers small grants to help pay for respite services for your child. In addition, the Regional Centers for Children and Youth with Special Health Care Needs may know about additional funding and/or programs in your area. However, outside funding is not available for many families so you may have to pay out-of-pocket for your child’s respite care.
A Good Idea!
To find interview questions and other tips to make sure you will hire the right person for your family go to the Respite Care Association’s KIT for Caregivers at respitecarewi.org/training-courses/kit-for-caregivers
Are there waiting lists for services from Respite Care Programs?
Yes. Many respite programs have wait lists or cannot hire enough providers to meet the needs all of the families who are eligible for respite services. Some programs make exceptions for families in crisis or who have an urgent need, so keep the respite program staff up-to-date about any changes to your family.
If you are willing to pay out-of-pocket, some respite programs may be willing to share their database of respite providers with you, even if you are still on a waiting list.
How Can I Find Respite Providers on My Own?
Think about looking outside the formal programs when you are searching for respite care. This could mean getting care for your child from extended family, friends, neighbors, or asking for help from your faith community. You should also talk to other families in your neighborhood or at your child’s school about their providers. They may know of a respite provider or even someone who simply likes to work with children.
Students also make great respite providers. Students may be willing to work a limited number of hours for free to fulfill class requirements to get “real-world” experience. If you live close to a technical college or university use the school’s job board to find students who are studying in these fields:
- Health Care
- Occupational Therapy
- Physical Therapy
- Speech Therapy
- Social Work
Does Wisconsin have Overnight Respite Care?
There are some overnight respite programs for children with disabilities and other special needs. One example is the Easterseals Respite Program. These programs are fun for the participants and give you a break from caregiving.
- Respite Care Association of Wisconsin (respitecarewi.org) helps families find providers and has materials on hiring and keeping respite providers. Grants are also available to pay for respite services.
- Easterseals Wisconsin (camp.eastersealswisconsin.com/easter-seals-camps/respite-camp) hosts respite programs and camps throughout the year.
- ARCHꟷNational Respite Network (archrespite.org/consumer-information) creates and shares resources, and hosts programs and trainings for respite providers and families.
Still Have Questions? Need Help Finding Services for Your Child?
- Regional Centers for Children and Youth with Special Health Care Needs dhs.wisconsin.gov/cyshcn/index.htm
- Well Badger Resource Center wellbadger.org or call 800.642.7837