Respite care

Some parents we interviewed received respite care (or short term breaks) that was either provided by social services or the parents received Direct Payments (see ‘Resources’) and arranged their own support. Some parents found Direct Payments too confusing and preferred to have support provided by social services.

Kirsten talks about how she manages Direct Payments.

Those parents who had some form of respite care were allocated between 2 hours to 10 hours per week. The form this took and the way in which parents used it varied. Some care-workers took the children out to different places. Some children went to a weekly play scheme funded by social services and one child had just started going to stay with another family for two nights a month. This latter arrangement was important to the parent because she was single and worried about who would look after her son if she became ill.

Sandy banks up her allocated hours so if she is having a “really, really bad time” she can ring up and get support.

A male carer looks after Jane’s son each week in an arrangement which has been a “godsend”.

Experiences of respite care were mixed and it was clear from parents’ stories that there was an awareness of a limited pot of resources. It was also felt by many parents that the choice of person to look after their child in their absence was not easy. Few of the carers offered had any training or experience of Asperger syndrome or Autism and were not equipped to deal with a child who might suddenly ‘freak out’.

Dot explains how the respite you may be given is not necessarily what you need and how it is not always effective.

Mike describes how “you have to make out like he’s the Tasmanian devil, you have to make out he’s awful or you won’t get anywhere.”

Some parents said that they would not use respite care because they did not need it; they thought that nobody else could look after their children or that they thought that it was their job. One mother said that there was “an institutional kind of thing” locally but she would only want her children to go to another family so that it’s like “going to an auntie or uncle”. Another mother thought it would have an “adverse effect” on her son. Many parents felt sure that their child would not want to be looked after by someone with whom they were not very familiar. Where there was someone who the child would accept, a relative or a good friend, parents were tremendously appreciative of the help they were willing to give. Other types of support, such as family and friends are discussed in ‘Factors that have helped’.

Last reviewed November 2012.

Last updated November 2010.