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Raising a
child with disability or chronic illness poses many challenges. As
families meet these challenges, time off can become a necessity for the
caretakers. In recent years, the growth of respite care
services--short-term specialized child care-- has begun to provide
families with some temporary relief.
This Briefing Paper is adapted from a 1989 NICHCY publication called
"Respite Care: A Gift of Time." It discusses the emergence and diversity
of respite care services, with particular emphasis on the benefits of
respite care for families of children with disabilities or special health
care needs. Tips and advice for parents who are seeking respite care are
also presented. This issue concludes with a current listing of readings
and organizations that can provide parents and others with additional
information on the subject of respite care.
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. Even when the diagnosis is clear,
there are still many uncertainties -- health, programmatic, and financial.
Social and community support can reduce the stress experienced by
families. The support of relatives, friends, service providers, and the
community can help families ease the adjustment period.
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 (Cohen & Warren, 1985).
The following was written by a parent of a child with a chronic illness.
"Of the first six months of my child's life, three and a half months were
spent in the hospital. We lived in a world of intensive care, with cardiac
monitors, oxygen tents, tubes in every orifice and IV's in every extremity
of my daughter's body.
"The weeks my daughter was home were completely taken up with her care:
two hours to get a meal in her, so for six hours a day I was feeding her;
up many nights holding her so she could sleep on my shoulder so that she
could breathe if she had a respiratory infection. Respiratory infections
were frequent because of her disabilities, and many nights my husband and
I would have to get our older child up, take him to our neighbor's house
and take my daughter to the hospital where she could have oxygen if her
breathing got too labored. After getting her admitted, we would go back
home, and get up again the next morning to get our son off to school and
to return to the hospital. This after being awakened in the middle of the
night with a phone call from the hospital saying that they were
transferring her to intensive care so she could be watched more closely.
"Did we need respite? You bet we did! This was important particularly with
a disabled and medically fragile child who needed expert care.
"During that time, either my husband or I always had to be with our
daughter while the other ran to the grocery, the bank, the pediatrician
for our son's health care needs, or just to sleep for a few hours. Our
friends disappeared from our lives, and our relatives lived far away. The
world of normal family life in which family members live, work, and play
together and take joy in each other's accomplishments, activities, and
outings vanished.
"Our daughter had major surgery scheduled at six months and she would be
hospitalized for at least 10 days. I approached my daughter's doctors with
our family's need for a rest. Would they and the nurses care for her for
seven days while our family went away? We wouldn't leave for three days
after surgery to make sure she was on the road to recovery. We felt safe
leaving her in their hands, and we could truly relax.
"The week that our family stayed at the beach was the most wonderful gift
during those six months. It was truly a blessing, not only for us but for
our daughter, for it gave us the opportunity to stand outside the
situation and view it from a distance. It enabled us to review what had
gone on before, to put things into perspective, to think and plan. We were
also physically restored, and we were able to go on with much more
strength for the next 12 months caring for our daughter. Respite care was
unavailable 11 years ago when we needed to cope with the challenges my
daughter presented to our family. I had to make it happen."
All parents need a break now and then, to have time for themselves away
from the responsibilities of caring for their children. This is true for
families of children with disabilities or chronic health care needs too,
only for these families it may be more difficult to arrange.
While respite may be a new word for some people, it is not a new
phenomenon; it emerged in the late 1960's with the deinstitutionalization
movement. One of the most important principles of this movement was the
belief that the best place to care for a child with special needs is in
the child's home and community. Families with a child who has a disability
or chronic illness know the commitment and intensity of care necessary for
their children. The level of dedication and care becomes part of daily
life, part of the family routine, but this same commitment can make stress
routine too. Parents can become accustomed to having no time for
themselves. According to Salisbury and Intagliata (1986), "the need of
families for support in general and for respite care in particular has
emerged as one of the most important issues to be addressed in the 1980's
by policymakers, service providers, and researchers in the field of
developmental disabilities," (p. xiii).
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.
United Cerebral Palsy Associations, Inc. (UCPA) defines respite care as "a
system of temporary supports for families of developmentally disabled
individuals which provides the family with relief. "Temporary" may mean
anything from an hour to three months. It may also mean "periodically or
on a regular basis." It can be provided in the client's home or in a
variety of out-of-home settings," (Warren and Dickman, 1981, p. 3).
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 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. The birth of a child with
a disability or the discovery that a child has a disability or chronic
illness is obviously a difficult time for the entire family, including
siblings, grandparents and other relatives. Families need to adjust to
major changes in their daily lifestyles and in their dreams. Extended
family and friends will also need to adjust to these changes. These
changes will take planning and time. We are accustomed to typical family
life; a child with a significant disability or chronic illness is not
typical. Therefore, plans for an untypical lifestyle call for creativity
and flexibility. 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.
Many families will find these changes difficult to handle. Many
communities may be limited in their resources or in their interest in
meeting the special needs such families present. These combined factors
can leave the immediate family with the full-time care of their child and
can lead to feelings of isolation from other family members, friends,
community activities, religious and social functions. Even performing the
basic necessities of daily life, such as grocery shopping or carpooling,
can become difficult to impossible.
It is obvious to anyone who has lived this life that respite care becomes
a vital service--a necessity, not a luxury. Parents, of course, are
clearly the experts about the need and importance of respite care. Just as
families differ, so will the necessity for respite care. Basically,
however, all families require some relaxation, diversion, and the security
of knowing that their children are safe and happy. The most difficult
problem for the family with a child who has a disability is finding the
quality of care and expertise the child needs.
As one parent put it, "Families need an uncomplicated, easily accessible
means of arranging respite care to suit their wants and needs. When a
potential pleasure becomes more trouble than it's worth, then I give it
up. I always measure the event against the complications involved in
making it happen. Time off is no relaxation if I spend the entire time
worrying if the kids are OK. I can't enjoy myself if I think they are
unhappy, and certainly I can't relax if I'm not confident about the
reliability of the person watching my children. I think many professionals
are under the misconception that time away from the cares of rearing a
child with a disability is what I need to maintain my sanity. I need much
more than time--I need the security that comes from knowing that the
person I've left my son with is as capable as I am of providing for his
needs. You simply can't relax and enjoy yourself and worry at the same
time. It's peace of mind I need -- not just time."
Benefits of Respite Care
In addition to providing direct relief, respite has added benefits for
families, including:
Relaxation. Respite gives families peace of mind, helps them relax,
and renews their humor and their energy;
Enjoyment. Respite allows families to enjoy favorite pastimes and
pursue new activities;
Stability. Respite improves the family's ability to cope with daily
responsibilities and maintain stability during crisis;
Preservation. Respite helps preserve the family unit and lessens
the pressures that might lead to institutionalization, divorce, neglect
and child abuse;
Involvement. Respite allows families to become involved in
community activities and to feel less isolated;
Time Off. Respite allows families to take that needed vacation,
spend time together and time alone; and
Enrichment. Respite makes it possible for family members to
establish individual identities and enrich their own growth and
development.
Often, we hear the question, "Who takes care of the caretakers?"
Caretakers can include not only parents, but also brothers and sisters,
grandparents, and extended family and friends. Respite gives caretakers
the opportunity to have a rest, to take care of personal matters, to enjoy
some leisure time, and occasionally to be relieved of the constant need to
care for a child with a disability or chronic illness.
The child or youth with disabilities also benefits from respite care,
gaining the opportunity to build new relationships and to move toward
independence. 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 1986 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. As Brill (1994) observes: Families soon discovered that the law
fell short of providing national guidelines for respite care. Every state
dispensed different versions of the services, and individual agencies
devised their own criteria for length of time and funding allotments. (p.
49)
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 (Cohen and Warren, 1985).
For children and youth with disabilities, their families and communities,
and Federal, state and local governments, the benefits of respite care are
enormous. However, the need for maintaining and expanding the levels of
available respite services is tremendous.
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. 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 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. The following suggestions
may help.
How can you tell if your family could benefit from respite care?
Ask yourself the following questions:
1. Is finding temporary care for your child a problem?
2. Is it important that you and your spouse enjoy an evening alone
together, or with friends, without the children?
3. If you had appropriate care for your child with special needs, would
you use the time for a special activity with your other children?
4. Do you think that you would be a better parent if you had a break now
and then?
5. Are you concerned that in the event of a family emergency there is no
one with whom you would feel secure about leaving your child?
6. Would you be comfortable going to a trained and reputable respite
provider to arrange for care for your child?
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.
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: 1-800-773-5433). 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. 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
* 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
* Parent-to-Parent
* University Affiliated Program(s)
* Community Services Board
* YMCA/YWCA
* Churches
* Recreation Centers
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
(Bradley, 1988).
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. Am I able to afford this service?
7. If I can't afford the service, are there funds available to assist me?
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 I be able to have a prior meeting with the care provider?
16. Will I have an opportunity to provide written care instructions to the
provider?
17. Will I have an opportunity to assist in training the provider with
reference to my son's/daughter's needs?
18. What is the policy that covers emergency situations?
19. Will I have to carry additional insurance to cover the provider while
he/she is in my home?
20. Is there a policy which deals with mismatches between providers and
the family?
21. Can I request a specific care provider and have the same person with
my child each time?
22. Will the respite care provider care for my other children too?
A Final Word
Caring for a child with disabilities or severe health problems can be a
full-time job. It is easy 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 your answer to
renewed energies and a new perspective. If respite care is not available
in your community, make it happen. The best advocate for your family and
your child is you. One of the most important goals to strive for is family
unity and well-being. It is important to remember that you, too, can have
the gift of time that respite care represents.
_____________________________________________
References
Agosta, J.M., & Bradley, V.J. (Eds.). (1985). "Family care for persons
with developmental disabilities: A growing commitment." Boston, MA: Human
Services Research Institute.
Borfitz-Mescon, J. (1988). "Parent written care plans: Instructions for
the respite setting." The Exceptional Parent, 18(3) 20-25.
Bradley, K. (Ed.). (1988). "Issues in respite care." Kaleidoscope: A
spectrum of articles focusing on families, 1(2) 6.
Brill, J. (1994). "Keys to parenting a child with autism." Hauppauge, NY:
Barron's Educational Series.
Cohen, S., & Warren, R.D. (1985). "Respite care: Principles, programs &
policies." Austin, TX: Pro-Ed, Inc.
Knitzer, J., & Olson, L. (1982). "Unclaimed children: The failure of
public responsibility to children and adolescents in need of mental health
services." Washington, DC: Children's Defense Fund.
"Rest a bit: A training program for respite care providers for families of
children with emotional problems." (1988). Topeka, KS: Rest a Bit of
Family Together, Inc.
Salisbury, C.L., & Intagliata, J. (1986). "Respite care: Support for
persons with developmental disabilities and their families." Baltimore,
MD: Paul H. Brookes Publishing Co.
Warren, R.D., & Dickman, I.R. (1981). "For this respite, much thanks...
Concepts, guidelines and issues in the development of community respite
care services." New York, NY: United Cerebral Palsy Associations, Inc.
Reprinted with permission from the National Dissemination Center for
Children with Disabilities (NICHCY).
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If children live
with pity, they learn to feel sorry for themselves.
If children live with encouragement, they learn confidence.
From Children
Learn What They Live, Dorothy Law Nolte |
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