Short breaks are a lifeline for disabled young people
Keith Towler
Monday, July 21, 2014
"To say that respite is a lifeline sounds like a cliche, but it really is and I honestly do not know how we would cope without it." These are the words of the mother of 10-year-old Nia, who has Down's Syndrome, ADHD and autism. Her mum spoke at the recent launch of Full Lives, my study of short breaks provision for children and young people with disabilities and their parents and carers in Wales.
In 2012, all local authorities in Wales were required to publish a short breaks services statement following regulations that came into force in June that year. These set out the ways in which local authorities must make provision for short breaks for the carers of disabled children in their area. As well as providing support to parent carers and other carers, short breaks offer disabled children opportunities to enjoy the rights associated with social activities.
During the study, we looked at the short breaks provisions local authorities must provide to support them to care for their children at home. We looked at the range of services provided and the degree to which children, parents and carers feel these actually meet their needs.
An online survey aimed to encourage children and young people with disabilities, parents, carers and anyone with an interest in the issue to have their say.
My team and I also met to hear their views and gain greater insight into short breaks provision.
The findings have highlighted a number of issues that need to be addressed.
One of the key messages that came through clearly as a result of this research is the anxiety experienced by children and young people as they approach their 18th birthday. This is echoed in the concerns raised by parents, carers and professionals. One deputy head at a special school for children with disabilities said that for many young people, reaching 18 can feel as if "all the scaffolding is suddenly being taken away".
Anxiety over the future
Planning services and support after the 18th birthday does not appear to take place on a consistent basis. This leaves many young people worrying about the future. But the burden of anxiety rests with parents and carers, many of who expressed concern around their own mortality and were anxious about who would care for their children in the future.
Overall, the majority of children were extremely positive about the activities they undertook on a short break. In fact, 77 per cent of children and young people with disabilities enjoyed their experiences. From cooking, swimming and kite flying to watching DVDs and playing on the Xbox, these were all valuable and appreciated experiences.
The difficulties that arise when short breaks services are not accessible to children with disabilities featured strongly in the meetings with local authorities. This was raised as an issue in relation to the impact on a parent or carer's confidence and trust in the service.
Short breaks provision is complex. Consideration must be paid to several factors to assess the needs of a child with a disability in relation to short breaks provision. These include age, impact of their disability, other pressures at home, financial demands and other siblings in the home - there's no "one size fits all" solution. Securing appropriate, tailored provision to meet individual need is fundamental. When we get it right, this is what it means to Nia and her family. Her mum told us: "As Nia has no verbal skills or formal way of communicating, we use objects of reference. As soon as she sees her red suitcase, she beams and promptly wheels it out through the door, so I guess she really enjoys going to respite."
Keith Towler is children's commissioner for Wales
