Caring More Than Most: Jennie and Ben

In this blog, mum Jennie talks about life with her five-year old son Ben, who has quadriplegic cerebral palsy and needs 24 hours a day, 1-1 care.

Ben has no independent mobility and has a severe sleep disorder, which means sometimes he is awake up to 6 hours a night.

Ben's dad and I struggle with the 24-hour a day care and lack of sleep. It's crippling at times. The whole social care and health system for families like ours works on a system of crisis management. There's no forward thinking. We live with the constant feeling that at any given moment our situation could implode.

We were denied a social care assessment three times. It took us 18 months in the end. ​For a long time we were told Ben was so young he was really no different from any other child his age - despite being on high rate Disability Living Allowance. In the end we complained to the Local Authority.

We were eventually given a social care package last April and we now get a few hours home help each week which, among other things, means we can collect his sister from school while Ben stays at home. Even so it's still been difficult to find carers to fulfil this role.

We found it so hard to get help with Ben's sleep disorder and for a long time we were told we must be doing something wrong. When a social worker eventually came round we were told we were highly unlikely to get an assessment for evening respite and if we did we might lose our few hours a week of daytime help that we'd fought so hard for.​ 

On the health front, we had been begging various members of Ben's team for about a year for help with his sleep disorder and in the end resorted to social media to plead for help. Eventually a friend of a friend of a friend, as a favour, managed to get an appointment for Ben at a sleep clinic.

Our lives are precariously balanced and if just one of the wheels falls off, for whatever reason, we could lose our home and have to pay back money for the home adaptations we've had done for Ben.

It makes me so angry that families with disabled children aren't getting the support they need and are made to feel like this. It shouldn't be this hard for people to secure the help they need and deserve.

Our Caring More Than Most report found that 24 percent of UK parents of disabled children provide an unimaginable 100 plus hours of care every week.

Caring More Than Most highlights a marked and unacceptable difference between the quality of life and opportunities available to disabled children and their families compared to those without disabilities. Find out more.

Written by Contact at 00:00