What makes a good break for carers of disabled children?

New research guides councils in the use of short breaks for disabled children and their carers. Julie Griffiths reports

With the government announcing an extra £20m will be spent on funding short breaks for carers of disabled children this year, attention is now turning to how councils can ensure that money is well-spent.

Research by the Centre for Disability Studies at Lancaster University has identified some of the key characteristics of successful short breaks (see box) and its report points out that councils need to ensure that the number and type of funded short breaks are diverse. The length of time can range from a few hours away from the family to overnight stays or week-long trips while the format can include the use of carers at home, activity sessions, trips, respite stays and a variety of clubs and groups.

Vicki Welch, senior research associate and one of the authors, says that the value of short breaks is in how they can benefit every family member. The disabled child is offered the opportunity for engaging in fun activities and making friends. Siblings can then enjoy receiving more of their parents’ attention or doing activities that they would not usually be able to do while parents are also given the chance to catch up on everyday activities and attend to their own physical and psychological well-being.

“Importantly, for some parents, being given a short break acted as an acknowledgement of the caring work they do for their child, as well as being a crucial element of enabling the parent to continue to care for their child at home,” says Welch.

Helen Davies, campaign officer at charity Every Disabled Child Matters, says the best way of ensuring short breaks come up to scratch is to ask those who use them. “Councils should be looking for satisfactory feedback from the parents, children and young people that are using the services,” she says.

Short break tips

● Ensure breaks are widely available and flexible – a number of parents reported that this was improved by the use of direct payments.

● Ensure venues are suitable – do children need hoists and changing areas? Children with autistic spectrum disorder need a secure environment with reduced sensory stimulation, for example.

● Transport – some parents reported that getting their child to and from an activity reduced the usefulness of the short break.

● Accessibility of information – many parents reported they had found out about short breaks through informal networks and support groups. There were concerns about parents who did not have access to these.

● Consultation and feedback – those providers who engage parents and disabled children in feedback and design generally have better outcomes.

Source: A Report on Themes Emerging from Qualitative Research into the Impact of Short Break Provision on Families with Disabled Children, Lancaster University.

Tales of two providers

Two providers recommended by service users for displaying good practice.

Out & About

Out & About helps disabled children take part in mainstream activities through short breaks. Young people aged from five to 25 choose the activity they want to pursue, then Out & About gives them the support to make it happen.

This can range from simple activities such as taking part in sports clubs, scouts or brownies or indulging a particular passion.

Chief executive Steve Allman says: “We’ve supported people to take part in more unusual activities such as bell ringing, pottery and polishing trains at a steam train museum.'”

The organisation supports 301 disabled young people in eastern England. It matches each client with a trained volunteer or support worker, most of whom are under 30 so they can appear to be a friend rather than a carer.

Allman says short breaks should give young people confidence and independence. “It’s liberating for them to be doing something ordinary and it makes them feel like other young people.”

He points out that often the leisure provider, who might initially believe they cannot accommodate a child with a special need, requires support because of a lack of confidence in dealing with a disabled child or a misunderstanding of what it involves.

Find out more

Unique Kidz and Co

Unique Kidz and Co in Lancashire provides after-school care and holiday clubs for disabled children, and their siblings, aged three to 19.

It was set up a year ago after Denise Armer and Jane Halpin, both mothers of children with special needs, found they were unable to find suitable childcare.

Armer says: “There are lots of things that are once a month or a fortnight but we wanted to meet the needs of parents who are trying to return to work, go to college or have time for themselves.”

She and Halpin know from personal experience how hard it can be caring for disabled children during school holidays, especially when they have able-bodied siblings. “It can be very stressful to meet your child’s needs, keep them stimulated and keep your own sanity,” says Armer.

The club also ensures disabled children are free to be themselves. “We have a 14- or 15-year-old boy who loves pushing prams or dressing up as a policeman. He couldn’t do that in a youth club.”

www.uniquekidzco.org.uk

This article is published in the 8 July 2010 issue of Communty Care magazine under the heading Spending the new money on short breaks wisely