A study by national disability charity Scope has found that many parents of disabled children are suffering from extreme stress and isolation. The survey of more than 1,500 parents, found that almost half (47%) have visited their GP due to anxiety, with 57% then being prescribed antidepressants.
The findings paint a stark picture of the emotional toll of a lack of support. Two thirds of parents (69%) said they’d had problems accessing local services over the past year, while 90% expressed concerns about cuts.
Many parents spoke of feeling isolated, and said that emotional support, such as support groups or counselling services should be more widely available. Three in five (60%) parents said that talking to other parents with disabled children was an invaluable source of support.
Earlier this year, Netbuddy – the online community I helped set up and run for parents of disabled children – became part of Scope.
Since its launch four years ago, Netbuddy provided a place for people to share experiences, swap practical tips and exchange information. In a climate of cuts to support and services, for many it became a lifeline.
Social networks such as Mumsnet and Facebook have become firmly established as platforms for like-minded people to connect. But, for parents of disabled children, the benefits of being part of a community that understands and empathises with the challenges they face can run even deeper.
Since merging, Scope and Netbuddy have worked together to develop a new platform to give parents and carers a place to talk, share experiences and find support. The community sits on Scope’s website and offers people an opportunity to connect with others in similar situations.
In addition to the forums, where people can talk about their issues and concerns, the new community also incorporates a tips feature where people can pick up practical ideas for dealing with a range of everyday issues – everything from bedwetting to specialist equipment. All the tips have been contributed by parents and carers, with first-hand experience of caring for a disabled child or adult.
The site also has a number of community advisors, who can answer questions in their specific area of expertise, such as education, speech and language therapy, technology and behavioural issues. Helping to run the community is a team of volunteers – parents of disabled children themselves, who see the value in supportive networks such as these.
Heather Harvey, whose 13-year old son Nicholas has autism and learning disabilities, was a parent volunteer at Netbuddy and is now a community champion for the new community at Scope.
“A lot of parents don’t know where to start when they find out their child is disabled,” she says. “They don’t know what support is available, what they’re entitled to, or what to do when they can’t access the help they need. Talking to other parents of disabled children, who have been in your situation, is incredibly helpful.
“My son Nicholas was placed in a school that wasn’t right for him. It got to the stage where he was doing nothing but lying on the floor of the school he was at, screaming and lashing out because he was so scared. But no-one would listen to me.
“I was so stressed that I lost a lot of weight and got alopecia and my hair fell out. I saw my GP and he suggested anti-depressants, but I didn’t want to take them.
“I asked online for advice from other parents of disabled children, and a woman called Jane got in touch. She had been in exactly the same situation as me and her child had just got a place in a brilliant school nearby.
“She helped me through how to get Nicholas a place there. It was a battle, but we did it and the change in him has been incredible.
“I like helping other parents now. It’s rewarding to give people hope when you’re able to say, I’ve been there, I’ve done that, and I’ve come other the other end.”
Scope’s online community is open to parents who care for children and adults with a wide range of impairments, and disabled people who want to connect to others too. To find out more, visit the online community.