Are families of children with disabilities getting enough support?

19 October 2012

This week a group of charities including Scope, Mencap, Sense sent out a press release to highlight their concerns about the scope of the draft children and families bill. They feel that the new bill will not do enough to reduce the daily struggle families with a disabled child face.

In the press release, the charities highlight that families of children with disabilities are not getting enough services and support. Scope’s ‘Keep us close’ report is based on the experiences of 600 families and the results are startling. 60% of families said it was a battle to get the right support for their child, and 62% are not receiving essential support such as health care, therapies or appropriate schools. Other charities also describe how families have to fight to get the right support for their child.

Sadly I am not surprised. Last year I spent time talking to children and families with complex health needs and/or dependent on medical technology. I was amazed to find that even the parents of those with the greatest need still had to battle for the basics. I heard about the difficulty in finding a suitable wheelchair, the long waiting times families experienced in order to get adaptations made to their home, and the battle to get someone to fund a relatively inexpensive piece of equipment. As for support, whilst some received excellent care packages, I can remember the story of one little boy who needs support 24 hours a day had to cope with 14 different agency carers to support him in one week.

During the past ten years I have seen numerous initiatives and policies be brought in which aimed to address inequality and improve the support that families of a disabled child should rightly receive. Initiatives such as the Early Support Programme, the National Service Framework for children and young people, and the personalisation agenda all purported to improve support and navigation to access services for children with a disability.

Despite all these goodwill programmes and policies, we are still not getting it right for these families. When I talk to people who are not in this line of work they are amazed to find that most families of children with disabilities do not have a social worker or access to on-going support, and can’t believe that people have to fight to receive the right services.

I hope that the Government listens to the evidence from families, charities and those supporting them to amend the draft bill to ensure more is included to reduce the challenges faced by these children and their families.