Introduction
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. They can have feelings of guilt, anxiety, even a sense of loss of control.
Jeanne Borfitz-Mescon (1988) suggests that a number of fears and concerns are common to parents in this situation: that the child may not get as much attention, or that the care may not be as good; that something may be missed; that the caretaker or staff may not be able to comfort their child, and that he or she might be left crying. The anxiety resulting from these very normal and real concerns or fears can in fact cause parents to believe that respite is just not worth it.
It is important that a parent becomes comfortable with his/her 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 help parents begin to think about respite care and whether their family, and their child with special needs would benefit from it. The following suggestions may help.
How to Tell if a Family Could Benefit from Respite Care
If parents are considering respite care they need to ask themselves the following questions:
1. Is finding temporary care for the child a problem?
2. Is it important that the parents enjoy an evening alone together, or with friends, without the children?
3. If they had appropriate care for their child with special needs, would they use the time for a special activity with their other children?
4. Do they think that they would be a better parent if they had a break now and then?
5. Are they concerned that in the event of a family emergency there is no one with whom they would feel secure about leaving their child?
6. Would they feel comfortable going to a trained and reputable respite provider to arrange for care for their child?
If you they answered “Yes” to several of these questions, they and their family could benefit from respite care and should investigate the resources in their community.
Many agencies and organizations have information on respite care services. (For a referral, contact the National Respite Locator Service, operated by the ARC National Resource Center: 1-800-773-5433). In general, assist parents in seeking out groups or professionals who work with children their child’s age. For example, if their child is in preschool, have them contact the school and discuss the need for respite care with the staff. If there is a parent group associated with their school, or if there is a local parent group concerned with children who have needs similar to their child’s, have the parent ask them. If the child is an adolescent, suggest to the parents that they talk to the staff at his or her school or, again, identify parent groups in the area with needs similar to theirs.
The following list presents some of the types of groups parents may want to contact in seeking services. Many will be listed in the telephone book. If they experience difficulty locating the organization in their community, often a state contact can be made.Examples include:
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
Also, state and local disability support groups and agencies may be helpful in assisting parents with respite care. Examples of these include:
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
Parent-to-Parent
University Affiliated Program(s)
Community Services Board
YMCA/YWCA
Churches
What Parents Need to Know when Seeking Respite Care Services in their Community
Parents seeking respite care services in their community should ask themselves the following questions. The information will be helpful when contacting agencies in their local community about respite care (Bradley, 1988).
1. What kind of services do they need? (Long-term, short-term, or both? Why?)
2. Do they prefer services in their home, a cooperative, or in an outside setting? (This will depend on the type of service they need.)
3. Can they donate time to a cooperative, or is it better for them to obtain help from a respite agency?
4. Does this agency provide the types of service they need?
5. Is there a cost for the service?
6. Is the parent able to afford this service?
7. If they can’t afford the service, are there funds available to assist them?
8. Who is responsible for the direct payment to the provider?
9. How are respite providers selected?
10. Are the providers trained?
11. How many hours of training have they had?
12. Do these providers have training in First Aid and CPR?
13. What other areas are covered in their training?
14. For out-of-home care, does anyone monitor the facility for safety and health measures?
15. Will they be able to have a prior meeting with the care provider?
16. Will they have an opportunity to provide written care instructions to the provider?
17. Will they have an opportunity to assist in training the provider with reference to their son’s/daughter’s needs?
18. What is the policy that covers emergency situations?
19. Will they have to carry additional insurance to cover the provider while he/she is in the home?
20. Is there a policy that deals with mismatches between providers and the family?
21. Can they request a specific care provider and have the same person with the child each time?
22. Will the respite care provider care for the other children too?
Conclusion
Just as in the school setting, where the policy fosters the least restrictive educational environment, it follows that the same philosophy should be encouraged in seeking out adult living arrangements. This least restrictive independent arrangement may require utilization of many agencies, support personnel, family, and so on. Everything should be done to attain an individual’s personal least restrictive living arrangement.
Further, individuals with disabilities should be aware that funding may be available to assist in making residence adaptive to personal needs–ramps, modifications in doorways or bathrooms. As a special educator, you must teach parents to explore this option with their local center for independent living.
Caring for a child with disabilities or severe health problems can be a full-time job. It is easy for parents to become overwhelmed with the care needs of a child with a disability or chronic illness. Often, families who would not hesitate to call for relief from the constant care of their typical children hesitate to call for relief from the care of their child with a disability or special health care need. That is why respite, as the word implies, is truly an interval of rest. Respite can be a parent’s answer to renewed energies and a new perspective. If respite care is not available in a parent’s community, help them make it happen. The best advocate for the family and the child is the parent. However, as a special educator you can also play a role in facilitating such services by having an active knowledge of what is available. One of the most important goals to strive for is family unity and well-being. It is important to remember that a parent, too, can have the gift of time that respite care represents.
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