Caregivers' Corner
Respite Resources
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"Who takes care of the caretakers?"
Respite Care is...
...a system of temporary supports for families of developmentally disabled individuals which provides the family with relief.
The word "temporary" may mean anything from an hour to three months. It may also mean "periodically or on a regular basis.
Respite Care can be provided in the client's home or in a variety of out-of-home settings.
Respite Services are...
...intended to provide assistance to the family, and to prevent "burnout" and family disintegration.
Since not all families have the same needs, respite care should 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.
Utilizing Respite Care
Respite care is an essential part of the overall support that families may need to keep their family member with a disability at home. However, caregivers needing to leave their loved one who has special needs in the care of someone else, either in or outside their home, often experience hesitation. They can have feelings of guilt, anxiety, even a sense of loss of control.
Fears and concerns are common in this situation: You may wonder:
- Will he or she get as much attention?
- Will the care be as good?
- Will something be missed?
- What if the caretaker or staff is unable to comfort my loved one?
The anxiety resulting from these very normal and real concerns can cause people to believe that respite is just not worth it.
It is important that 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 would benefit from it. The following suggestions may help.
How can you tell if your family could benefit from respite care? Ask yourself the following questions
If you have answered "Yes" to several of these questions, you and your family could benefit from respite care and should investigate the resources in your community. |
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.
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In general, to find respite care, seek out groups or professionals who work with people of your loved one's age group. 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.
For further information and assistance, contact NICHCY, and be sure to ask for a NICHCY State Resource Sheet for your state.
State and Local Government Agencies
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State and Local Disability or Support Groups
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Additional Organizations to contact are listed below.
ORGANIZATIONS 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. |
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. |