A lack of support for parents of disabled children in the Midlands is leaving families vulnerable, new research warned today.
A study by the Disabled Children’s Partnership (DCP) found more than 80 per cent of families in the region had faced difficulties when trying to access support.
The study was carried out nationwide, asking parents with disabled children their experiences of the health and social care system and how it impacted them.
The DCP has now launched a new campaign calling for more awareness and more government support to help families in that situation.
In the Midlands, the study found:
80% across the region said they faced problems getting the care and support they need
51% in the West Midlands and 50% in the East Midlands said they felt their child’s wellbeing had suffered as a result
71% in the West Midland and 76% in the East Midlands said they’d experienced mental health problems – up from 15% in the general population
The family of Toby Williamson, from Alcester in Warwickshire, knows the support system all too well.
He was born with delayed myelination, meaning the sheaths around his nerves were underdeveloped – leading to physical and mental developmental delays.
Now aged 16, he has the mental age of a one-year-old, and will need to be looked after his entire life.
His mother, Charlotte, is his full-time carer. As part of the package of support the family receives, Toby goes to respite care for a few days every two months – totalling 40 days a year.
A health worker also comes each morning during term time.
Only twice during her son’s 16 years has she needed to ask for more help.
I just hit a brick wall. You just suddenly realise you can’t cope any more.
And you need to have the support, and luckily I had the support of the social worker, and I went to her and said, you know, I’ve reached breaking point.
I was lucky that I could do that. But there are a lot of people who do need help who are not getting the help, who do need more services.
– CHARLOTTE WILLIAMSON
Still, she told ITV News Central that they are one of the lucky ones. Already in the system, they have avoided being hit by budget cuts locally – but for people just now trying to get support, it’s a different story.
“Many of them are already at breaking point when they first start getting things like respite care,” she said.
“I can only imagine how let down they must feel. The only real answer is early intervention.”
And that’s what the new campaign by the DCP, called The Secret Life of Us, is aiming to achieve.
Partnership chairman Amanda Batten said 43 per cent of people said they did not know anyone who was disabled.
We’re really worried that the cuts to this group of people could [therefore] go unnoticed.
We’re looking for wider pubic awareness and support for these fantastic families across the country who are really struggling to get the services that they need.
– AMANDA BATTEN, DISABLED CHILDREN’S PARTNERSHIP
She said the DCP will now be calling for the government to address funding – to make the lives of children like Toby, and their families, a little easier.
In response, a Department for Education spokeswoman said the government had invested £222 million over four years into “fundamental” changes to the support available for children with special educational needs and their families.
Ofsted and the Care Quality Commission conduct thorough inspections of local services, drawing on parents’ own experiences.
Where inspectors find significant concerns, the Department for Education and NHS England work jointly to hold authorities and health services to account for delivering the improvements needed.