Respite Care Services for Families caring for a person with an intellectual disability: Decision making, experience and models of respite

(01 Jun 2011)

The study aimed to evaluate how family based models of respite care locate themselves within the current climate of respite provision with a view to informing the C. S. O. involved ( Home Share Clare) on future provision of their family based respite service. The research compared this model to the more traditional model of community based residential respite care through both a literature review and primary research carried out with participants that use both models of respite care. In doing so the research aimed to understand how carers came to the decision to use respite services, their feelings surrounding this and their experiences of using two particular models of respite care.

Ten full time carers were interviewed.

This research found that while both community based and family based models of respite care are identified in the literature, current policy and funding in Ireland is largely tied up in delivering community based models and as a result this has remained the dominant model of respite care available to carers.

In looking at carer’s experiences of accessing and using both models of respite a number of issues were highlighted. The need for a range of available respite services, including both family based and community based models of respite, was identified by participants in this study. All the participants identified that the quality of care and service both models of respite provide for them, once accessed, however the lack of adequate respite breaks in general was a voiced concern in this study. Participants identified the differing but complimentary roles that both family based and community based respite offers them in terms of meeting their short and long term need for quality respite breaks.

There was a consensus among all participants that there is a perceived lack of information regarding respite services available to them generally. Participants felt that information on available services was not freely available or provided to them, meaning this was something which they had to seek out themselves, and can lead to families accessing respite services long after they have begun to need them.

There was also an identified worry amongst participants about the future care of their dependant person. Participants regarded using community based respite as a means to gaining access to long-term care placements for when they can no longer provide full time care for their dependent person. Participants also felt that using this model of respite was important for their family member as it replicated and exposed them to a model of care arrangement they were likely to enter into in the future. This is in contrast to the purposes of respite care.

Participants also identified the lack of adequate government funding and support for respite services as an issue that requires addressing. All participants expressed awareness of the current economic climate and conveyed their concerns that respite services will become a targeted area for cutbacks. They feel that any cuts in respite services would impact on, and be detrimental to, the level, quality and maintenance of care that they can provide to their family member with disabilities within the home. 

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