Respite Care for Families Raising Children with Disabilities

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Raising a child with disabilities can be a very rewarding experience, yet it can also be a very exhausting task. Parents often have to forfeit their sleep, give up time for themselves, have difficulty finding time to spend with their other children, and have little or no time left to nurture their marriage. When a parent becomes consumed and overwhelmed with caring for their special child, the child's well-being may be at risk as well as the parent's. Respite care is a service that takes the child's and parent's welfare into account; it serves to preserve the family unit and lessen the pressures that may lead to institutionalization, divorce, neglect, or child abuse.

Respite care is a short-term, temporary care provided to children with disabilities so that their families can take a break from their routine caregiving role. It can range from a few hours of care to up to three months of care depending on the severity of the child's disability, the needs of the family, and the type of respite program available in the community. Respite gives the family time away from the stresses of raising a child with disabilities and allows parents the opportunity to have time to themselves, spend time with their other children, run to the grocery store, work out at the gym, and many other activities necessary for having a well-balanced life. Respite, therefore, provides parents the opportunity to take care of their own needs so that they have the necessary patience and energy to care for their child. It is a service that is available from infancy to adulthood.

Respite care began in the late 1960's with the deinstitutionalization movement. During this time, it was realized that children with disabilities or special health care needs are better off being cared for in their own home and living in their own community. In 1986, Congress passed the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act (TCCA). This Act directed the U.S. Department of Health and Human Services, Children's Bureau, to provide funding to states to assist private and public agencies in developing temporary care services. (TCCA has since been consolidated into the Child Abuse Prevention and Treatment Act Amendments of 1996.)

Many states have developed family support legislation, which may include an entitlement program in which a family is entitled to a certain amount of respite services sponsored by the state. Families can receive services from home health care agencies, respite programs, or family friends. Title V: Services to Children with Special Health Needs (part 2 of the Social Security Act) offers many states in-home nursing care, home care, and respite care for families of children with chronic illnesses and medical needs. In addition, Title XIX: Medicaid has the Early and Periodic Screening Diagnosis and Treatment Program (EPSDT) which allows states to offer services including home care or in-home nursing care. Further, Medicaid has the Home and Community Based Waiver which is another program that brings respite to families.

There are two types of respite programs available:

• In-Home Programs - Many families prefer to have respite provided in their home because they and their child are more comfortable in their own surroundings and the home is already equipped for the needs of the child. In-Home services can be provided by a nursing agency, volunteer association, homemakers service, sitter service, or by friends or relatives.

• Out-of-Home Programs - These programs allow the children to receive respite care with other children, which may be appealing to adolescents who are preparing to leave the home for independent living. Out-of-Home programs include those that are in a care provider's home, a respite family day care, corporate foster homes that offers respite care, residential care facilities, parent cooperatives (where respite care is shared between several families of children with special needs), hospitals, and day camps.

Within these respite programs are different levels of care providers. For a child with disabilities but no special health care needs, a specially trained caregiver may be provided. For a child with disabilities who has relatively simple health concerns, a certified nursing assistant may be necessary. And, for those children who have more severe health care needs, skilled nursing can be provided.

One of the most difficult things for a parent to do is leave their special child alone with someone they don't know. Some parents feel like they can't relax and take advantage of the time away because they are too worried about their child not being appropriately cared for or worse, something going wrong medically. Some parents, on the other hand may be resistant to respite care because they feel that it is unnecessary and that they are perfectly capable of taking care of their own child. While these feelings are understandable, it is suggested that parents ask themselves the following questions, and if they answer "yes" to any of them, respite care may indeed be beneficial:

• Is it difficult to find temporary care for my child?
• Does caring for my child interfere with scheduling appointments or with personal projects?
• Is it important that my spouse and I enjoy an evening alone without the children?
• If I had appropriate care for my child with a disability, would I use the time for a special activity with my other children?
• Am I concerned that in the event of a family emergency there is no one with whom I would feel secure to leave my child?
• Would I feel comfortable having a trained, caring respite provider for my child?
• Do I avoid going out because I feel I would be imposing on the family and friends who care for my child?

The benefits of respite care are numerous. When parents get a break, it helps to avoid burnout, stress, and fatigue. The break allows parents to relax so when they come back, they are revitalized and better able to care for their child. In addition to benefitting the parents, however, respite can also be beneficial to the special child. The child is given the opportunity to develop new relationships and move toward more independence. And, since children tend to feel their parents' stress, respite can actually give the child a much needed break too.

For more information on respite care or to find a respite program in your area, please visit the following websites:

• National Respite Network http://www.chtop.com/nrn.htm
  
• ARCH National Resource Center for Respite and Crisis Care http://www.chtop.com/archbroc.htm
  
• The ARC http://thearc.org/faqs/respite.html
  
• NICHCY http://www.nichcy.org/pubs/newsdig/nd12.htm