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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 has consistently been identified by families as a priority need.
"Respite" refers to short term temporary care provided to people with disabilities in order that their families can take a break from the daily routine of care giving. Unlike child care, respite services may sometimes involve overnight care for an extended period of time.
One of the important purposes of respite is to give family
members time and to temporarily relieve the stress they may experience
while providing extra care for a son or daughter with a disability.
This, in turn, can help prevent abuse and neglect and support family
unity (US/GAO, September 1990). Respite care enables families to take
vacations, or just a few hours of time off. Respite is often referred
to as a gift of time.
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Who needs respite services?
Parents may be reluctant to use a respite program. They may even
question the need for this type of service. Valdivieso (1989)
recommends that families of children with mental retardation and other
disabilities ask themselves these questions to determine if respite
services are necessary:
- 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 together 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 with?
- Would I feel comfortable having a trained, caring respite provider care for my child?
- Do I avoid going out because I feel I would be imposing on family and friends who care for my child?
- If family members answer "yes" to any of these questions, the family may very well benefit from respite care services.
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Who provides respite services?
Most programs are managed by affiliates or chapters of national
organizations such as The Arc, Easter Seal Society and United Cerebral
Palsy Associations in cooperation with local hotels (US/GAO). Many
other programs are provided by local organizations such as churches,
schools and other non-profit groups. Sometimes families arrange for
care with neighbors or other people they know.
What kinds of services are provided? Services are provided in many ways depending on the provider, the needs of the family and available funds. Some respite programs send a caregiver to the family's home. Others require that the individual come to a day care center or respite group home.
In some programs the care is provided by a host family which also has a family member with a disability. They usually provide respite services in exchange for the same services from another family. These programs are called "host family" or exchange programs.
Emergency respite services are also important. Parents need to
be able to access services on short notice in the event that a family
emergency occurs.
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How are respite services funded?
Many programs receive public funding for their services. Some charge
fees on a sliding scale based on the family's income. Other programs
may be operated by non-profit organizations which receive funding from
donations or other sources. Many programs must use a combination of
funding sources in order to meet their financial needs.
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Are there eligibility requirements for respite services?
In almost all state-funded programs, eligibility is based on the
child's age and disabilities. Family income is also usually considered.
In a 1990 survey of 111 respite care programs, 97 programs provided
services for children as young as newborns, 71 programs provided
services until age 22, 11 programs provided services only for young
children, and 29 programs provided care throughout the child's life
(US/GAO). 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.
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How do families benefit from respite services?
The
benefits are numerous, but not always obvious. Providing a break in the
daily routine may help parents avoid burnout, stress and fatigue.
Periodic respite care can help parents relax for a while and come back
revitalized and better able to care for their son or daughter. Respite
care not only provides caregivers a break, but also gives the child a
change in his or her daily routine. It can provide the child with
opportunities to build new relationships and move toward independence
(Valdivieso, 1989).
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How do families obtain services?
Accessing the system can be difficult, but not impossible. Contact your
state's planning council on developmental disabilities, community
mental health/mental retardation center, or a local chapter of The Arc
and ask them to refer you to a program. Many programs have been
developed when families made their needs known to community mental
retardation advocates and service providers.
Many respite programs have been developed by parents to
fulfill their own needs. For example, Jody and His Friends, Inc. is a
respite program started in California by a couple who were unable to
find respite services. These parents joined with the Vallejo-Benica
chapter of The Arc and developed an in-home respite program. Jody and
His Friends, Inc. was such a success that it is now an agency of the
State of California Department of Developmental Services (Valdevieso,
1989).
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What can I do to get a respite program started in my community?
A good way to get started is to first determine what kinds of services are needed.
Ask other parents in the community about their needs for respite services. Do they need or want in- home care, or could care be provided at a community center? Determine if overnight or weekend care is needed.
Find a respite provider in another community that already
provides these types of services and ask them how they started their
program.
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Contact state licensing agencies to find out licensing requirements for operating a respite program.
Find an organization in your community that might be interested in
helping you start a program. Churches, schools, local Red Cross
chapters and disability organizations may provide the personnel,
experience and/or financial resources necessary to start or operate a
new program.
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Are respite care providers required to be licensed?
Of the 111 programs surveyed, 91 had eligibility or licensing
requirements that addressed the areas of age, training, education and
licensing or certification by a profession or specialty. To ensure that
quality services are being provided, these 91 programs were required to
1) maintain records of services, 2) provide follow-up to families that
have been served, and 3) pass site inspections where services are
provided (US/GAO).
Parents should make the final determination about respite providers. They should examine various aspects of the program such as staff training, monitoring by outside agencies, safety and health measures, parental involvement in decision-making and other related areas. The state or local licensing office should be able to answer questions about complaints against a specific program and whether that program has consistently met all licensing requirements.
Some questions to ask about a respite care program are:
- How are care providers screened?
- What is the training and level of experience of the care providers?
- Will care providers need additional training to meet specific family needs?
- How and by whom, are the care providers supervised?
- What happens during the time the children are receiving services? Are there organized activities? How are meals handled?
- Does the program maintain current information about each child's medical and other needs? Is there a written care plan?
- What procedures does the program have for emergencies?
- Can parents meet and interview the people who care for the children?
- How far ahead of time do parents need to call to arrange for services?
- Are families limited to a certain number of hours of services?
- Does the program provide transportation?
- Can the provider take care of brothers and sisters as well?
- What is the cost of services? How is payment arranged? (Karp, undated).
- Can I use a regular child care program for respite?
Many day care centers in the community offer "drop in" services for a day or sometimes for an extended period. To use drop in services, parents must often give some advance notice and complete the required paperwork, such as the child's medical history and emergency contact persons.
With the passage of the Americans with Disabilities Act (ADA), these programs must now make every reasonable attempt to provide the same services for a child with a disability. The ADA mandates that public accommodations, including child care centers, make reasonable modifications in policies, practices and procedures in order to accommodate individuals with disabilities. However, child care centers and other entities covered under the ADA are not required to modify their policies and practices if it would "fundamentally alter" the nature of their services.
If a child care center restricts its services to minor children, parents who have an adult child with mental retardation may have to consider other respite options. In addition, centers may not have to provide certain services, for example those involving skilled medical procedures or on site nursing, because the provision of these services could be considered a "fundamental alteration" or a service outside a child care center's area of specialization (DOJ, July 1991).
For further information about child care and the Americans with Disabilities Act, refer to: The Arc's Q& A on child care settings and the Americans with Disabilities Act (May, 1992).
The Arc National Headquarters P.O. Box 1047 Arlington, Texas 76004 (817)261-6003 (817)277-0553 TDD thearc@metronet.com (e-mail)
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