An article by Cherie Booth. Image with permission
Families with disabled children face immense challenges on a daily basis, and more often than not encounter a closed door when it comes to ensuring their children enjoy the same opportunities as other children.
Take Sarah*, a mother of a little girl with Down’s syndrome. In stark contrast to her son who is not disabled and can access a range of after school activities and sports, her local primary school doesn’t provide any accessible or inclusive social activities, and even excludes Sarah’s daughter from school trips questioning, ‘What would she get out of it?’
The impact this has on Sarah’s daughter’s life is profound. It leaves her isolated, severely inhibiting her ability to make friends and build relationships with others.
Families often face other problems. Four in 10 disabled children live in poverty; children with special educational needs (SEN) are 9 times more likely to be permanently excluded from school; and 3/4 of families with disabled children experience poor mental health as a result of the social, emotional, and financial isolation they face.
To put it simply, they are at crisis point.
And at the heart of this issue is the critical lack of support for disabled children within their own community, support that other families simply take for granted - be it access to the right school or nursery place, or to leisure activities they can enjoy.
Recent research by the disability charity Scope has found that two thirds of families with disabled children cannot get this most basic state and local authority support in their own area. Instead they have to travel or stay away from home, often creating many more difficulties in terms of increased time and costs for families that are already struggling,
A supportive learning environment and access to extra-curricular activities provided locally should not be seen as a ‘luxury’ for families like Sarah’s. Disabled children have just as much right as every other child to be involved in their community and to deny these families such support is a violation of their rights.
This is important. The future of some of Britain’s most vulnerable families will be debated this week when the House of Lords begins consideration of The Children and Families Bill, which contains the Government proposed reforms to support for families with disabled children and those with special educational needs. One in fifteen of all families has a disabled child, and more than a fifth of children, around 1.7 million, have special educational needs, so this Bill will affect many thousands of people.
But the Government’s reforms in the Bill fall woefully short of the kind of transformative change that is needed. This warning has also just been sounded by over 100 charities and parents’ organisations.
On top of that, the Joint Committee on Human Rights has expressed serious concerns that the Bill will fail to ensure disabled children can fulfil their right to participate in their local community, and UNICEF, in their recent ‘State of the World’s Children’ report, has warned that much more needs to be done by Governments to adopt more inclusive approaches to disabled children - ‘making the mainstream work for everyone rather than creating parallel systems.’
In fact the Government can achieve this with a small change to the Bill: ensuring that the services all families need for their child to reach their potential - schools, nurseries, youth groups, playgrounds - are inclusive and accessible for disabled children. By doing this we can also tackle the common misconception that they always need ‘different’ or ‘specialist’ services, which are inevitably somewhere away from where they live.
David Cameron recently said ‘When you've had the privilege of bringing up a profoundly disabled child, you suddenly realise there are two different sets of places: those that are disabled-friendly, that are accessible, that are helpful; and those that aren't… And what this all about really, is greater equality in our country, making sure that all places are more friendly, and accessible to disabled people.'
But this welcome and undoubtedly genuine sentiment is sadly nowhere to be seen in the reforms in the Children and Families Bill. The Government must rectify this if families with disabled children are to be included in David Cameron’s vision to be most ‘family friendly government ever’.