REVIEW OF RESPITE CARE SERVICES FOR PEOPLE WITH INTELLECTUAL DISABILITIES

With the support of respite care, families can be given a break from their daily care and the family member with a disability can experience broader social contacts writes Emma Foley, RNMH, Respite Care Services, Stewarts Hospital Services

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Introduction

Respite care has been defined as a family support that provides temporary relief from the rigorous physical and emotional demands involved in caring for a family member with a disability (Botucks and Winsberg 1991). Caring for an individual with a disability in the family has a major impact on family life, affecting it in all physical, social and emotional areas of life. Respite care services can help alleviate the pressures placed upon the carers and the family that are difficult to cope with and to support the family to continue to care for their child at home. It also provides the service user with the opportunity to have a break from the family to develop their social communications and enhance their independence as an individual.

The aim of this article is to review and evaluate the strengths and weaknesses of respite care in an effort to enhance the quality of its service. This article reviews several studies to develop a wide vision on respite care.

Reasons for respite care

Families seek respite care for their own personal reasons and needs. In selecting a suitable service it is necessary to assess these needs and reasons, so to meet them in the most effective manner and develop a quality service that is utilised an the most effective manner. Families seek respite care for several reasons, primarily:

  • to provide a break for the family from the constant pressures of providing for an individual with a disability on a 24-hour round-the-clock basis, and
  • to improve and enhance the quality of life for the person with an intellectual disability.

Findings from studies (Slater 1986, Sines 1999) show that there is a greater dependence on respite care with the increasing age and disability of the service-user. Caring for an individual with a disability has been found to be associated with increased stress among carers, which in turn contributes to increased demand for respite care.

Identified problems with respite care

Various problems have been identified relating to respite care services. Service users find that there is a lack of facilities for individuals with physical disabilities or for those with behavioural difficulties, ironically where the services would be more effective and of high demand (Slater 1986, Sines 1999). A lack of choice and flexibility are identified as problematic. David Sines (1999) identified difficulties in access to services, poor quality of care and failure to meet the emotional needs of the family as being difficulties associated with respite care facilities.

Needs and recommendations

Future requirements, recommendations and identified concerns have been reported by parents, thus creating a format for enhancing the quality of respite-care services. Evaluation of studies shows that there is a greater need for:

  • increased support services
  • provision of more facilities to service users
  • increased flexibility
  • universal access for all families with a child with a disability
  • services to meet individual needs of persons with a disability (McGill 1996).

Other reports show that there is insufficient information on family supports, with the effect that families are restricted from availing of such services. Families need sufficient information and encouragement to avail of them, thus enabling their disabled member to live at home longer and minimise the possibility of them becoming institutionalised.

Shultz, Edinger and Morse (1987) postulate that respite care is ‘slowly being redefined in the broader context of social supports, focusing upon the needs of the caregiver and the needs of the person with a disability’ (cited by Freedman et al., 1990).

Conclusion

A family member with an intellectual disability can place great pressure on family life; however, with the support of respite care the family is provided with a rest from the daily caring and the individual is enabled to experience social contact outside the family circle. With the advent of the Government Health Strategy (2001), further encouragement is offered for the development of respite care for people with an intellectual disability. We must hope that the future of respite care services is bright.

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