Disabled children fly under the Government’s radar - Scope
There isn’t anyone in the Government whose job it is to champion disabled children and their families, says Scope's James Taylor .
All parents have hopes, dreams and aspirations, and want the best for their children. Parents of disabled children are no different. Disability touches every aspect of a family’s life, from the emotional to the financial. Not many people truly understand that life costs more for disabled families. They need to buy equipment most people don’t, they might use more heating or energy and then pay over odds for insurance.
At the same time our public services affect the lives of disabled families in many different ways – from health, care and education to financial support and attitudes in society.
Here's the issue.
Parents of disabled children are being let down by a system and a society that are working against them not for them.
We found that three quarters of parents of disabled children aged five and under have experienced negative comments by the public when they go out with their disabled child. Four in ten described the experience of getting a diagnosis for their child as “anxiety inducing”. Over half of parents described it as “stressful”. Few parents are offered emotional support at this time, even with the subsequent risk that they become even more isolated.
This all adds up. But don’t take my word for it. Dan White is a father to Emily, 12, who has spina bifida and is a wheelchair user. “Emily was our first leap into the world of disability. It was all brand new to us. There was very little support available to us around this time.
“There are a few leaflets kicking around but early on support was really bad,” he said.
And he’s clear that society, attitudes and the built environment need to change. Dan finishes, “I want everyone to be included, particularly our children. They are all an essential part of society, whatever way they communicate.”
For things to change, strategic direction needs to come from the Government. Ministerial responsibility for families with disabled children spans an array of government departments. There is now a Minister for Disabled People in the Department of Work and Pensions, a Minister for Children and Families in the Department for Education and a Minister for Care in the Department of Health and Social Care. But there isn’t anyone in the Government whose job it is to champion disabled children and their families.
The Government has acknowledged that there should be a joint approach to co-ordinate these government departments with local authorities and the NHS. Reforms to the Special Educational Needs and Disabilities system in 2004 and the Interdepartmental Ministerial Group on Disability and Society, set up this year, are a step in the right direction. But more needs to be done.
In response Scope is launching its Now Is The Time campaign that calls on the Government to provide leadership on this issue, appoint a Minister for Disabled Children and Families, and promise families with disabled children more joined-up, robust support.
The new minister would provide an accountable focal point within the Government who can address issues facing disabled children and their families, bringing together relevant departments and bodies. And that person would champion disabled children in meetings, cutting across governmental departments, workstreams, teams and projects.
A minister will also enable the Prime Minister to send a clear signal of her Government’s commitment to disabled children. The aspirations of the UK’s 1,000,000 disabled children and their families are at serious risk of hitting a brick wall unless the Government acts. Of course, in the short-term Scope and other organisations will be picking up some of the slack. We’ll campaign to improve attitudes, work with families, give them advice and support and work on building their resilience in everything from sleep to employment. But that’s no substitute for the state taking action.
Today Scope is launching a campaign that says Now is the Time for the Government to demonstrate that disabled families are not alone and appoint a Minister for Disabled Children and Families.