What is Respite Care?
Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client’s home or in a variety of out of home settings.
Respite care is an essential part of the overall support that families may need to keep their child with a disability or chronic illness at home.
Since not all families have the same needs, respite care should always be geared to individual family needs by identifying the type of respite needed and matching the need to the services currently available, or using this information to develop services where none exist. Once identified, it is also important for families to have ready access to that type of respite, in an affordable form.Regardless of the type of respite program utilized, the emphasis should be on orienting services toward the entire family. It is also important to bear in mind that the child will change as he or she grows and develops into an individual with his or her own personality and ideas.
In many families, it is common for children to attend day care or after-school care, interact with peers and adults outside the family, and stay with a child care provider while their parents enjoy an evening out. Respite provides these same opportunities for children with special needs.
For older individuals with a disability, respite can assist in building skills needed for independent living. Since the most appropriate living situation for many adults with a disability is in a group home or other supported environment, out-of-home respite care can enable families to test this option, explore community resources and prepare themselves and their family member with a disability for this change.
States and communities are recognizing that respite care also benefits them. On average, the costs for respite services are 65 to 70 percent less than the costs of maintaining people in institutions (Salisbury and Intagliata, 1986). The cost effectiveness of respite services allows scarce tax dollars to be used for additional community based services. During the previous decade, over 30 states passed legislation for in-home family support services, including respite care, using either direct services or voucher systems (Agosta and Bradley, 1985).
With the passage of the Children’s Justice Act (Public Law 99-401) and its amendment, the Children’s with Disabilities Temporary Care Reauthorization Act (P.L. 101-127), respite care has gained support at the Federal level. This legislation authorized funding to states to develop and implement affordable respite care programs and crisis nurseries. Unfortunately, while this Federal funding provides relief for some families, access and affordability continue to be issues for many families in need. Every state dispensed different versions of the services, and individual agencies devised their own criteria for length of time and funding allotments.
Thus, in spite of the availability of government funding in some areas, many respite care programs must charge for their services. This practice reduces expenses for providers and makes it possible to serve more families. However, charging for respite services can limit their availability to those families who can afford the fees.
RESPITE CARE SUGGESTIONS FOR PARENTS Parents deciding to leave their child who has special needs in the care of someone else, either in or outside their home, may experience a variety of hesitations. It is important that as a parent you become comfortable with your decision and develop the trust critical to maintaining the peace of mind necessary for relaxation and enjoyment. One way to accomplish this goal is to begin now to think about respite care and whether you, your family, and your child with special needs would benefit from it.
Many agencies and organizations have information on respite care services. (For a referral, contact the National Respite Locator Service, operated by the ARCH National Resource Center (919) 490-5577 ). In general, seek out groups or professionals who work with children your child’s age. For example, if your child is in preschool, contact the school and discuss the need for respite care with the staff. If there is a parent group associated with your school, or if there is a local parent group concerned with children who have needs similar to your child’s, ask them. If your child is an adolescent, talk to the staff at his or her school or, again, identify parent groups in your area with needs similar to yours.
The following list presents some of the types of groups you may want to contact in seeking services. Many will be listed in your telephone book. If you experience difficulty locating the organization in your community, often a state contact can be made. Additional resources are listed at the end of this Briefing Paper.
State and Local Government Agencies
* State Department of Mental Retardation
* State Developmental Disabilities Council
* State Program for Children with Special Health Care Needs (formerly Crippled Children’s Services)
* Departments of Health and Human Services, or Social Services
* Department of Mental Health
* State and local Departments of Education
* State Protection and Advocacy Agency
State and Local Disability or Support Groups
* The Arc
* United Cerebral Palsy Associations, Inc.
* Autism Society of America
* Brain Injury Association
* Mental Health Association and CASSP
* Spina Bifida Association
* National Easter Seal Society
* Parent Training and Information Center
* University Affiliated Program(s)
What should you know when seeking respite care services in your community?
Ask yourself the following questions. The information will be helpful to you when contacting agencies
in your local community about respite care.
1. What kind of services do I need? (Long-term, short-term, or both? Why?)
2. Do I prefer services in my home, a cooperative, or in an outside setting? (This will depend on the
type of service you need.)
3. Can I donate my time to a cooperative, or is it better for me to obtain help from a respite agency?
4. Does this agency provide the types of service I need?
5. Is there a cost for the service?
6. If I can’t afford the service, are there funds available to assist me?
7. Who is responsible for the direct payment to the provider?
8. How are respite providers selected?
9. Are the providers trained?
10. How many hours of training have they had?
11. Do these providers have training in First Aid and CPR?
12. What other areas are covered in their training?
13. For out-of-home care, does anyone monitor the facility for safety and health measures?
14. Will I be able to have a prior meeting with the care provider?
15. Will I have an opportunity to provide written care instructions to the provider?
16. Will I have an opportunity to assist in training the provider with reference to my son’s/daughter’s needs?
17. What is the policy that covers emergency situations?
18. Will I have to carry additional insurance to cover the provider while he/she is in my home?
19. Is there a policy which deals with mismatches between providers and the family?
20. Can I request a specific care provider and have the same person with my child each time?
21. Will the respite care provider care for my other children too?
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ADDITIONAL RESOURCES
ARCH National Resource Center. (1995). “ARCH national directory of crisis nurseries and respite care programs.” Chapel Hill, NC: Author. (Available from ARCH National Resource Center, Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone: 1-800-473-1727 ; (919) 490-5577 .)
Borfitz-Mescon, J. (1988, April). “Parent written care plans: Instructions for the respite setting.” Exceptional Parent, V (No.), 20-25.
Carney, I., Getzel, E.E., & Uhl, M. (1992). “Developing respite care services in your community: A planning guide.” Richmond, VA: The Respite Resource Project, Virginia Institute for Developmental Disabilities. (Available from the Respite Resource Project, Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, PO Box 843020, Richmond, VA 23284-3020. Telephone: (804) 828-8587 .)
Hill, J.W. & Ledman, S.M. (1990). “Integrated after-school day care: A solution for respite care needs in your community.” Richmond, VA: Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, Respite Resource Project. (Available from Respite Resource Project, at
the address listed above.)
Karp, N., & Ellis, G.J. (Eds.). (1992). “Time out for families: Epilepsy and respite care.” Landover, MD: Epilepsy Foundation of America. (Available from the Epilepsy Foundation of America. To order this publication please call: 1-800-213-5821 .)
Kniest, B.A., & Garland, C.W. (1991). “PARTners: A manual for family centered respite care.” Lightfoot, VA: Child Development Resources; Richmond, VA: Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, Respite Resource Project. (Available from Respite Resource Project, at the address listed above.)
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ORGANIZATIONS
CLEARINGHOUSES AND TECHNICAL ASSISTANCE:
ARCH National Resource Center for Crisis Nurseries and Respite Care Services — Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone: (800) 473-1727 ; (919) 490-5577 . The mission of the ARCH National Resource Center is to provide support to service providers through training, technical assistance, evaluation, and research. The Center provides a central contact point for the identification and dissemination of relevant materials to crisis nurseries and respite care programs. Numerous fact sheets and general resource sheets (including state contact sheets) are available about respite care and crisis nursery care. ARCH also operates the National Respite Locator Service who’s mission is to help parents locate respite care services in their area. Please contact them at 1-800-773-5433 .
OTHER ORGANIZATIONS:
The Arc (formerly the Association for Retarded Citizens of the United States) — 500 E. Border Street, Suite 300, Arlington, TX 76010. Telephone: (800) 433-5255 ; (817) 261-6003 ; (817) 277-0553 (TT).
Association for the Care of Children’s Health (ACCH) — 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (800) 808-2224 ; (301) 654-6549 .
Association for Persons with Severe Handicaps (TASH) — 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Telephone: (410) 828-8274 ; (410) 828-1306 (TT)
Autism Society of America — 7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814. Telephone:
(800) 3-AUTISM ; (301) 657-0881 .
Brain Injury Association (formerly the National Head Injury Foundation) — 1776 Massachusetts Avenue N.W., Suite 100, Washington, DC 20036. Telephone: (800) 444-6443 ; (202) Epilepsy Foundation of America — 4351 Garden City Drive,
Landover, MD 20785. Telephone: (800) 332-1000 (outside of MD); (301)459-3700 .
National Down Syndrome Congress — 1605 Chantilly Drive, Suite 250, Atlanta, GA 30324. Telephone: (800) 232-6372 ; (404) 633-1555 .
National Down Syndrome Society — 666 Broadway, New York, NY 10012-2317. Telephone: (800) 221-4602 ; (212) 460-9330 .
National Easter Seal Society — 230 West Monroe Street, Suite 1800, Chicago, IL 60606. Telephone:
(800) 221-6827 ; (312) 726-6200 ; (312) 726-4258 (TT).
Sick Kids (need) Involved People (SKIP) — 545 Madison Avenue, 13th Floor, New York, NY 10022. Telephone: (212) 421-9160 .
Spina Bifida Association of America — 590 MacArthur Boulevard N.W., Suite 250, Washington, DC 20007. Telephone: (800) 621-3141 ; (202) 944-3285 .
United Cerebral Palsy Associations, Inc. (UCPA) — 1660 L Street N.W., Suite 700, Washington, DC 20036. Telephone: (800) 872-5827 ; (202) 842-1266 .
Zero to Three/National Center for Clinical Infant Programs — 734 15th Street, NW, Suite 1000, Washington, DC 20005-1013. Telephone: (202)638-1144 . (Voice); 1-800-899-4301 (Publications).
FAMILY SUPPORT PROJECTS:
American Association of University Affiliated Programs (AAUAP) — The AAUAP represents the national network of University Affiliated Programs (UAPs) in the United States. The UAPs provide interdisciplinary training for professionals and paraprofessionals and offer programs and services for children with disabilities and their families. Individual UAPs have staff with expertise in a variety of areas and can provide information, technical assistance, and inservice training to agencies, service providers, parent groups, and others. For information on a UAP in your area, write: AAUAP, 8630 Fenton Street, Suite 410, Silver Spring, MD 20910. Telephone: (301) 588-8252 .
The Beach Center on Families and Disability — This center conducts research and training, and disseminates information relevant to families who have members with developmental disabilities or serious emotional disturbances. Write: The Beach Center on Families and Disability, The University of Kansas, 3111 Haworth Hall, Lawrence, KS 66045. Telephone: (913) 864-7600 .
Children and Adolescent Service System Programs (CASSP) — CASSPs are federally-funded programs located throughout several states and localities, designed to improve service delivery for children and adolescents with emotional disorders. CASSP provides funding to states for research and training centers and for technical assistance activities. To contact a CASSP in your area, or to obtain a publications list and additional information, write: National Technical Assistance Center for Children’s Mental Health, 3307 M Street, NW, Suite 401, Washington, DC 20007. Telephone: (202) 687-5000 .
National Clearinghouse on Family Support and Children’s Mental Health — The Center provides research and training, and disseminates information relative to serious emotional disorders and family support issues, including a newsletter. Write: National Clearinghouse on Family Support and Children’s Mental Health, Portland State University, P.O. 751, Portland, OR 97207-0751. Telephone: 1-800-628-1696 ; (503) 725-4040 .
The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has profound effects on a family. When parents learn that their child has a disability or special health care need, they begin a process of continuous, lifelong adjustment. Adjustment is characterized by periods of stress, and during this time, family members individual feelings of loss can be overwhelming, shutting out almost all other feelings. Coping with uncertainty about the child’s development may interfere with the parents ability to provide support to each other and to other family members.
Over the years, there has been a growing awareness that adjustment to the special needs of a child influences all family members. This awareness has generated interest and has led to the development of support services for families to assist them throughout the lifelong adjustment process. Within the diversity of family support services, respite care consistently has been identified by families as a priority need.
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