Nancy Olson, RN
Respite Care Association of Wisconsin, Inc.
The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family. When parents learn that their child has a disability or special health care need, they just begin the process of continuous, lifelong adjustment. Adjustment is characterized by periods of stress, grief, frustration, and isolation, and during this time, family member's 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 for each other and to other family members. Even when the diagnosis is clear, there are still many uncertainties -- health, financial, and programmatic.
Social and community support can reduce the stress experienced by families. The support of relatives, friends, service providers, and the community can help ease the adjustment period.
Over the years there has been a growing awareness that the 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 through out the lifelong adjustment period. Within the diversity of family support services, respite care consistently has been identified by families as a priority need.
The following was written by a parent of a child with a chronic illness.
"Our son came into our lives years ago as a newborn and we never had a clue that anything was out of the ordinary. At the age of seven he was given several different diagnoses, including: ADHD, learning disabled, dyslexic, and an as of yet undiagnosed emotional disorder. To us he is a happy go lucky 9 year old who likes to ride his bike, fish, and play Nintendo. He doesn't think sleep is a necessity, and keeps us on our toes. His level of energy can really wear us down. To us he is 'mildly disabled.'
It is our daughter that has really tested our fortitude. For the first 2 years of her life, she put us on an emotional roller coaster ride that we will never forget.
We know first hand the benefit of respite care and the essential role it plays in supporting a family with a special needs child. We have utilized respite since our daughter was 2 years old, and will continue to use it as long as it is available to us.
Why is respite care so important to our family?
Our daughter was born two months premature and spent 2 weeks in the NICU. She had what the doctor called an unremarkable 2-week stay in NICU. Even though the stay was 'uneventful' she was discharged with an apnea monitor to be worn at night until 6 months of age, we were told this was standard protocol with any 2-month preemie. We hooked her up to the monitor every night and it never made a sound. Aside from the apnea monitor our daughter was developing 'typically' and passing all her developmental milestones. At 5 months of age she was right on schedule developmentally. But as we entered the 6th month things began to change. Our daughter stopped gaining weight, it took two hours to get a feeding into her only to have her vomit, so we would wait a little while and try again 24 hours round the clock. She began to have episodes of inconsolable crying, she stopped following objects with her eyes and her apnea monitor started alarming. Our Birth to Three Early Intervention program became involved and together with our physician, were working together to figure out what was happening to our daughter, although we were uncertain about her diagnosis we felt we were in good hands and could focus some time and energy on her two brothers. Little did we know this was just the beginning.
On December 13, 1992 our daughter stopped breathing and I had to perform CPR to revive her. The next 12 months was a blur of hospitals. We lived in a world of intensive care, with cardiac monitors, oxygen tents, tubes in every orifice of her body and IV's in all extremities my daughter's body. My daughter was put through every test possibly known to man. On December 14, 1993 our daughter was diagnosed with a rare progressive neurological disorder called PEHO syndrome. Our world was suddenly changed. It became a 24-hour routine of cares, holding her so she could sleep on my shoulder so she could breathe if she had a respiratory infection. Respiratory infections were common because of her disability and many nights my husband or I would have to get our other children up and take them to a neighbors house and then take her to the emergency room where she could get oxygen and breathing treatments. Both my husband and myself always wanted to be with her when she went to the hospital because we were never sure if she would make it back home again. After admitting her and being assured she was stable one of us would go back home, get in a few hours sleep, pick up our sons get them ready for school, and then return to the hospital. To complicate matters she was aspirating her feeding and was developing pneumonia's and would need surgery to correct this.
Did we need respite?..........You bet we did. This was particularly important with a disabled and medically fragile child who needed specialized care. During this time either my husband or myself always had to be with our daughter while the other ran errands, did the grocery shopping, or attend to our sons needs. Our friends disappeared from our lives, and our relatives lived far away. The world of normal family life in which family members live, work, play together and take joy in each others accomplishments, activities and outing vanished.
Our daughter had major surgery scheduled and she would be hospitalized for at least ten 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 her for three days after the surgery to make sure she was on the road to recovery. Was it going to be easy to leave her? Not on your life, but I knew that we needed to do something, and we felt safe leaving her in their hands, and we could truly relax.
The week of vacation was the most wonderful gift we could have given our family. It was truly a blessing not only for us but also for our daughter, for it gave us an opportunity to stand outside the situation and view it from a distance. It enabled us to spend time with our other children and with each other, review what had gone on before, to put thing into perspective, to think and to plan. We were physically and emotionally restored, and were able to go with much more strength.
When we returned to our community, we found that there was neither a respite program nor funding available to us. We were devastated. I contacted several area agencies and still couldn't find anyone who could help us. It was about this time that I learned of our state's respite care association and with their help was able to get a respite program started in our community. I also started learning all I could about funding sources for families who need support services. They had names like CIP, COP, and Family Support. They all had waiting lists, but they were out there.
Respite was unavailable 5 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 of children with disabilities or chronic illness also, only for these families it may be more difficult to access.
While respite may be a new word for some people, it is not a new phenomenon: it emerged late in the 1960's with the deinstitutionalization movement. One of the most important principles of this movement was the belief that the best place for a child with special needs was in the child's home and community. Families with a child with a special need 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 or other siblings. The need for support in general and respite in particular has emerged as one of the important issues to be addressed in the 90's by policymakers, service providers, and researchers in the field of disability support services.
Respite care is an essential part of the overall support that families need to keep their child with a disability or chronic illness at home. Respite care is temporary care to persons with disabilities or special health care needs, including individuals at risk of abuse or neglect, or in crisis situations.
Temporary means anything from an hour to two weeks. It may mean periodically or on a regular basis. It can be provided in the family's home or in a variety of out-of-home settings. Respite services are intended to provide assistance to a family and to prevent "burn-out" 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 match the existing need to services currently available, or using the information to develop services where none exist. Once identified, it is also important for families to have 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 chronic illness is obviously a difficult time for the entire family, including siblings, grandparents, and other relatives. Extended family and friends will need time 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 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. 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 cleaning the house 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, revitalization, and the security of knowing that their children are safe and well cared for. The most difficult problem for a family with a child with a special need is finding the quality of care and expertise the child needs.
As one parent puts it, "Families need an uncomplicated, easily accessible means of arranging respite care to suit their wants and needs. When the potential pleasure becomes more trouble than it's worth then I give 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 okay. I can't enjoy myself if I think they are unhappy, and I certainly can't relax if I'm not confident about the reliability of the person watching them. I think many professionals are under the misconception that the time away from the cares of my child with a special need is what I need to maintain my sanity. I need so much more than time... I need the security that comes from knowing that the person I've left my child with is as capable as I am of providing for his or her needs. You simply can't worry, and relax and enjoy yourself at the same time.
Parents deciding to leave their child who has a special need 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: The child will not get enough attention, care will not be as good as yours, something will be missed or overlook. The caretaker or staff will be unable to comfort your child, he / she will be left crying, and the provider or staff wouldn't be able to handle your child. 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 your family and your child with special needs could benefit from it. The following suggestions may help.
How to tell if your family could benefit from respite care? Ask yourself the following questions:
If you answered yes to any of the above questions you and your family could benefit from respite and should investigate respite services in your community.
Many agencies and organizations have information on respite care. In general seek out groups or professionals who work with your children your child's age. For example if your child is in pre-school, 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 special needs ask them. If your child is an adolescent, talk to staff at his or her school or again identify parent groups in your area with needs similar to yours. In addition the following list presents some of the types of organizations you may want to contact in seeking services:
What should you know when seeking out respite services in your community?
Ask yourself the following questions when seeking respite in your community:
In addition to providing relief, Respite has added benefits, including:
|Relaxation.||Respite gives families peace of mind, helps them to relax, and renews their humor and energy;|
|Enjoyment.||Respite allows families to enjoy favorite pastimes and pursue new interests and activities;|
|Stability.||Respite improves the family's ability to cope with the daily responsibilities and maintain stability during crisis;|
|Preservation.||Respite helps preserve the family unit and lessens the pressures that might lead to out-of-home placement, divorce, abuse and neglect;|
|Involvement.||Respite allows a families time off to become involved in community activities and to feel less isolated|
|Time off.||Respite allows a family to take that much needed vacation, spend time together, or time alone, and|
|Enrichment.||Respite makes it possible for family members to establish individual identifies and to enrich their own growth and development.|
Often we hear the question, "Who takes care of the caregiver? Caregivers can include not only parents, but also brothers and sisters, grandparents, and extended family and friends. Respite gives the caregiver the opportunity to rest, or to take care of personal matters, to enjoy some personal time, and to 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 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 provider while the parents enjoy a night out. Respite provides these same opportunities for children with special needs.
For older individuals with a disability, respite care 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 living 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 transition into adulthood and living away from home.
States and communities arerecognizing that respite care also benefits them. On average the cost of respite care is 60-75% less than the cost of maintaining people in out-of-home placements, i.e. institutions, nursing homes, foster care (Salisbury and Intaglata, 1986). Respite care is cost efficient. The average out of home placement is $60,000 per year, short-term crisis care $600.00 per day, regularly scheduled respite $2,000-$2,450 per year.The cost effectiveness of respite services allows for scarce tax dollars to be used for additional community based services, including respite care, using either direct service or voucher system, (Augosta and Bradley, 1985).
With the passage of the Children's with Disabilities Justice Act (Public Law 99-401) and it's amendment, The Children's with Disabilities Temporary Care Reauthorization Act (P.L 101 -127), and most recently the Community Based Family Resource and Support Program Grants respite 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 service and the individual agencies devised their own criteria for eligibility and funding allotments.
Thus in spite of the availability of government and state funding, respite remains high in demand and in some areas non-existent. For children and youth with disabilities, their families, communities, and federal, state, and local governments the benefits of respite care are enormous. However the need for maintaining and expanding the levels of respite care is tremendous.
I'm constantly reminded of the essential part respite plays in support services for families whenever I fly. When giving their pre flight departure talk the flight attendants talk about the use of the oxygen mask. When explaining the use of oxygen masks they stress the importance of putting your mask on, first, then assisting those around you. You need to take care of yourself; this will enable you to continue taking care of those around you.
Caring for a child with disabilities or chronic illness is a full time job. It is easy to become overwhelmed with the care needs of that child(ren) 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 children with a disability. 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 can become overwhelmed with the care needs of a child with a disability or chronic illness and taking care of others starts with taking care of yourself.
Augosta, J.M. & Bradley, V.J. (Eds). (1985) Family care for persons with a developmental disability: 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. (1988) "Issues in respite care" Kaleidoscope: A spectrum of articles focusing on respite and 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. (1992) Unclaimed Children: The failure of public responsibility to children and adolescents in need of mental health services. Washington D.C.: 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. & Intaglata, 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.
ARCH National Resource Center. (1998). ARCH national directory of crisis nurseries and respite care programs and a spectrum of articles focusing on respite and families. Chapel Hill, NC.
Carney, I., Getzel, E.E., & Uhl, M. (1992). Developing respite care in your community: A planning guide. Richmond VA: The Respite Resource Project, Virginia Institute for Developmental Disabilities.
The Respite Care Association of Wisconsin, Inc. (1998) A variety of articles on respite care for families. Respite Care Association of Wisconsin, Inc. Lending library.
Copyright © 1998 Nancy Olson.For technical assistance: