Shared Care Scotland calls for better provision of activities outside of term-time.
Thousands of families with disabled children face isolation and stress during school holidays, according to a new report.
Research for the charity Shared Care Scotland revealed that half of all parent-carers feel anxious about the lack of support they receive outside term-time, with the impact felt “well beyond the holiday period”.
A third of those surveyed said they were unable to give their other children enough attention during holidays due to the additional responsibilities of caring for a disabled child. Similar numbers told researchers they struggled to hold down a job for the same reason, while almost all (98%) said they felt their disabled child was not included in their local community during holiday periods.
Shared Care Scotland said its survey highlighted the challenges faced by families with disabled children who can often be left out of holiday activities enjoyed by their peers.
Chief executive Don Williamson said: “We know from years of research that respite and short breaks bring significant benefit to the health and wellbeing of both carers and those they care for, yet we’ve also heard from parent carers of disabled children that the holiday period is a time of considerable stress due to the lack of activity programmes for their children.”
One parent highlighted just how difficult the holiday period can be, saying: “If it wasn’t for summer holidays, we would cope as a family. It is holidays that stop me being able to do the job I want to do, holidays that have my son head banging, hitting, and biting more than usual, holidays that have me literally contemplating suicide or leaving home by the last two to three weeks every year. The rest of the year, we cope – sometimes.”
The research showed that disabled children and young people aspire to the same things as their non-disabled peers, yet the reality of their holidays was often far different. Of those surveyed, 81% said that the thing that would make the biggest different to them would be if more activities were available.
One young person told researchers: “I want to be able to take part like everyone else. I need people to understand how to include me but I don’t need cotton wool around me, or care. I want to do adventurous stuff. Don’t assume because I am physically less able that I can’t get in a canoe or on a bike.”
Shared Care Scotland hopes its report can be used to better understand the situation faced by families during the summer period, and also to identify what could be done better.
Mr Williamson said: “As life starts to open up again after lockdown, it’s important we don’t forget those children and their families who may in effect remain locked down due to a lack of support over the holidays.
“We must recognise that access to high quality, reliable holiday programmes should be something families can rely on, and we need to consider how we can work to make mainstream provision more accessible and inclusive to all.”
