Ellie Grace
16 August 2017

In 2012 my partner broke both his wrists. Following surgery, he faced 3 months in casts, followed by 3 months with splints. When we first returned home from the hospital and realised that – unable to lift a mug - he would need to drink tea through a straw, it opened the smallest window in to what needing to provide full time care for a loved one means.

For those 6 months, I cooked every meal and fed his to him, cleaned the flat, paid our bills and bought our food. I helped him get dressed, shower and brush his teeth. He couldn’t open doors, carry bags or take off his shoes and public transport was a minefield. Often it was funny and more often it was frustrating, but when those six months were over, we went back to our normal lives. It was a brief interlude in our relationship that now almost feels as if it never happened. Although this felt exceptional, most of us will have a similar experience: three in five of us will provide full time care for a loved one at some point in our lives.

I’m lucky that my job allows me to meet incredible people on a daily basis and so far this summer has been no exception. In June, I travelled to Birmingham to meet the team running the Weaver and Young Foundation, a charity supporting parents caring for children with special educational needs or disabilities (SEND), in particular those with autism. The charity runs a number of parenting groups and is an amazing support for the local community, offering advice and a friendly ear to those who need it.

For many parents with children with disabilities, summer holidays can be challenging. Just one in eight local authorities report having enough holiday childcare for children with disabilities in their area, and average holiday childcare costs double what families pay on food and drink. This can mean working parents struggling to make work pay or remain in work at all this summer.

The Weaver and Young Foundation have a clever solution towards supporting parents with disabled children during the summer holiday. They organise day trips for families that have no fixed start time - parents just call the team when they arrive. It’s a valuable service for parents who have to time manage both providing full time care for their child on top of making a living for their family. ‘Our parents aren’t late; they just get there when they get there.’

The following day, I met with Parent Champions Wandsworth. Parent Champions are parent volunteers who give a few hours a week to talk to other local parents about the services available for local families. Parent Champions Wandsworth are energetic and confident about what they do and, like the Weaver and Young Foundation, do a lot of work to support local parents with disabled children. The Parent Champions Wandsworth team is made up of eight parents who all have children with disabilities themselves.

Parent Champions coordinator, Lucia, tells me that she thinks it’s the relationships formed between the parents and the support they give each other that makes their Parent Champions scheme so successful and so beneficial to other parents. The opportunity to speak to another parent who understands your situation and shares that real life experience is invaluable.

Parent Champions Wandsworth has also done amazing work speaking with local businesses and raising awareness of the needs of parents with disabled children in the local community. The support they have secured includes summer holiday activities such as free entry to Battersea Park Children’s Zoo, free bike hire and reduced fees for swimming and the theatre. But too many children still struggle to access services. At times a simple task such as visiting a park is challenging and in some cases impossible. As six weeks of summer stretch out in front of parent, Parent Champions Wandsworth are supporting parents with practical solutions that can make life a little easier.

We can all be doing more to raise awareness about the needs of families with disabled children. The Family and Childcare Trust are proud to be part of the Disabled Children’s Partnership, campaigning to help the public understand the challenges that families face, and to bring about improvements to services. You can also join the campaign to show your support.

Learn more about the Weaver and Young Foundation.

Learn more about the Parent Champions programme.