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Caring for the Caregiver: Respite services

The number of children diagnosed with a disability in Canada (and around the United States and world) has increased in recent years, and this has brought considerable attention to the topic of childhood disability supports and services.

Families of children with exceptionalities may require a number of different supports over time (initial diagnosis, transitions etc.) and across different contexts (school, home, daycare etc.). Respite services are just one of the many supports that might be useful to a family with one or more children with a disability.

The goal of respite services is to provide parents or guardians of children with limiting conditions with some temporary relief from their care-giving duties. Many parents or guardians, whether they have children with or without disabilities, use informal arrangements to achieve this. They hire a babysitter, or ask a friend or relative to provide temporary care while they go to a medical appointment, take a break or visit a friend.

Unfortunately, these informal arrangements are not always feasible when a child has one or more exceptionalities. According to the CanChild Centre for Childhood Disability Research, families of children with exceptional needs not only have a greater need for temporary care supports, they also tend to have greater difficulty making these types of arrangements. Public or private “respite services” are designed to fill this service gap.

So what are respite services?

Respite services provide caregivers with “temporary relief from the daily responsibility of attending to an individual with disabilities” (Reinhard, Bemis, & Huhtala, 2005 pg. 1). In the Canadian context, there is no one “respite service model” used throughout the country. Canadian Respite services take many different forms depending on their purpose, duration, staff and location (Pollock, Law, King & Rosenbaum, 2001).

Some support services for families of children with disabilities have the explicit purpose of providing respite; these services might have the word “respite” in their name (e.g. Toronto Respite Services). Other services have the same effect: they provide respite for family caregivers, but only as a by-product of performing their primary function (e.g. summer camp) [Stalker & Robinson, 1993].

Respite services can be either short-term or long-term in duration. Short-term services provide relief for a few hours at a time whereas long-term services provide alternate care for a week or more at a time.

The location of respite services varies. The service might provide temporary care in the family home while the caregiver is present or while they have stepped out. Alternatively, the service may provide care at an off-site location in the community.

Who provides the temporary care varies from service to service as well. While some supports and services employ paid or professional caregivers with special training, others may rely on volunteers and community members (e.g. cooperative models that may involve relatives, family-to-family support groups, or parent-cooperatives).

Sources:

  • Pollock, N., Law, M., Kind, S. & Rosenbaum, P. Respite Services: A Critical Review of the Literature. McMaster University: 2001.
  • Reinhard, S., Bemis, A., & Huhtala, N. (2005, January). Defining respite care [Discussion Paper]. New Jersey: Community Living Exchange.
  • Stalker, K., & Robinson, C. (1993). Patterns of provision in respite care and the Children’s Act. British Journal of Social Work, 23, 45-63.
  • Statistics Canada. Participation and Activity Limitation Survey 2006: Families of Children with Disabilities in Canada. 2008.

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