Receiving Respite

Hundreds of families that are affected by family members with disabilities go to great lengths to ensure that they are providing adequate care for their loved ones, all in an effort to keep them at home. Despite this, the physical, emotional, and financial consequences for the caregivers can be overwhelming without some form of support.

In 1986, Congress passed the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act, which “established federal funding to create temporary child care (respite)…Administered through the U.S. Department of Health and Human Services, Children’s Bureau, competitive grants have been awarded to States since 1988 to assist private and public agencies in developing model respite services across the United States” (ARCH National Resource Center, 2009). According to the article, ‘Jumping through hoops’: parents’ experiences with seeking respite care for children with special needs by J. L Doig and colleagues, “Respite care may act as a means to reduce stress and fatigue in people for a dependent who has a disability” (2008). However, there has been some controversy over the fact that respite care is not easy to come by and if it is, most families are not satisfied with the care they are receiving, as well as other factors such as, “Insufficient access to care, troubles with waitlists and issues surrounding the frequency or amount of care, as well as the strict eligibility requirements for some types of respite support” (Doig, McLennan & Urichuk, 2008).

The initial purpose of respite care was to provide temporary relieve to the caregivers of individuals with cognitive and behavioral disabilities. However, according to information from ARCH National Resource Center, respite care provides opportunities for “the family to engage in daily activities thus decreasing their feelings of isolation; providing the family with rest and relaxation; improving the family's ability to cope with daily responsibilities; maintaining the family's stability during crisis situations; helping preserve the family unit by decreasing the pressures that might lead to divorce, institutionalization, abuse and/or neglect; and, making it possible for people with disabilities to establish individual identities and enrich their own growth and development” (ARCH National Resource Center, 2009).

Although the process of obtaining temporary relief or respite is tedious, it is important to not let it become a discouragement, as the research shows that allowing for a break can increase the chances of success for both the child and the caregiver. There are some resources that give you the opportunity to locate respite care by state and also support groups that focus on disability specific issues. I have included the websites below.

National Respite Network and Resource Center provides state by state locator of respite care.

http://www.archrespite.org/

Children’s Disability Information lists support groups by disability specific issues.

http://specialchildren.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=specialchildren&cdn=parenting&tm=32&f=10&tt=14&bt=1&bts=1&zu=http%3A//www.childrensdisabilities.info/speclists.html

Please respond with questions, comments and concerns.
-Kristin

References:

ARCH National Resource Center. (2009, April 21). Respite care for children with disabilities and terminal illnesses. Retrieved from http://www.disabled-world.com/disability/caregivers/respite/respite-for-children.php

Doig, J. L., McLennan, J. D., & Urichuk, L. (2008). ‘Jumping through hoops’: parents’ experiences with seeking respite care for children with special needs. Child: care, health and development, doi: 10.1111/j.1365-2214.2008.00922.x