This is one of those good times when I can tell you your voice is starting to get through to the politicians on something so important.
For the first time earlier this week, MPs debated the Children and Families Bill – what could be the biggest change to support for disabled children in 30 years. Their families are tearing their hair out because they can’t get the support they need in their local area, that’s why over the past few months we’ve been asking for your help as part of the Keep Us Close campaign.
And what you did is starting to work.
Two-thirds of MPs who spoke in the debate talked about disabled children. Nearly half of these raised the issue of local support, some mentioning our campaign specifically. It’s brilliant and it gives us hope to see all these MPs speaking up for disabled children and their families.
So much of this progress is because of you and more than 20,000 others around the country who’ve spoken up: parents of disabled children, children themselves, friends and relatives, and so many others who care. Whoever you are, thanks so much for taking on this cause.
Our campaign isn’t over and we’ll need to keep pushing. Sadly, although we have a number of MPs behind us, the Government isn’t doing enough yet. We’ll continue to work with MPs as the Children and Families Bill goes through Parliament and I might need to ask you to do more over the next few weeks or months.
For now, I thought you might like to hear a few highlights of what they said in Parliament – please see below.
Paul Maynard, MP for Blackpool North and Cleveleys, who has cerebral palsy:
“I know from my own life story how important it is to get this right. I was one of the children whose parents had to fight to get me into a special school, and then fight again to get me back into a mainstream school a few years later… When I was in the mainstream school, my parents had to fight to get the speech therapy I needed to make the most of being in that mainstream school.
It was with some distress and dismay that when I first got elected, I found that the first three cases of my very first constituency surgery were all about parents fighting for their children to get the special educational help they needed from their schools. Thirty years on, nothing much seemed to have changed.”
Angela Smith, MP for Penistone and Stockbridge:
“At the heart of the struggle faced by families with disabled children and those with Special Educational Needs is the unacceptable lack of support for these families close to home… This situation is getting worse, not better, with local authorities now facing cuts of up to 30% of their budgets.
Many councils are therefore being forced to cut services for disabled people, making an already bad situation worse. For example, more than half of councils have cut spending on respite breaks for families, and 77% of local authorities are either making cuts or efficiency savings in services for people with a learning disability.”
Sir Tony Baldry, MP for North Oxfordshire:
“As a Member of Parliament for three decades, I have too often met parents who have felt that they have had to battle for the support they need. They have been passed from pillar to post, and bureaucracy and frustration have faced them at every step.”
David Blunkett, MP for Sheffield Brightside and Hillsborough:
“Above all, the emphasis should be not just on education and skills but on skills for life that enable people to live independently on equal terms and to be self-reliant… we must ensure that the child’s needs are paramount.”
Peter Aldous, MP for Waveney:
“The Bill is to be welcomed, because while there are examples of good practice, the current system is not fit for purpose. I have been advised of examples where young, vulnerable people and their families have been let down; there are cases in which children have been excluded from activities, such as sports days and swimming, and in which schools have failed to provide support for a child until a medical diagnosis has been received, despite accepting that the child was struggling to access the curriculum.”
Sarah Champion, MP for Rotherham:
“The care system is often disjointed and baffling. Families routinely deal with more than 30 professionals from education, social care, health and other services. It was standard for families to tell me how frustrated they were that they had to say the same thing over and again to different professionals because the information was not shared between departments, let alone between other agencies.
Communication between agencies is generally inadequate, leaving families burdened with the stress of having to navigate their way through an uncoordinated system. All that happens at a time when many families are overwhelmed by their child’s situation. Unfortunately, that experience is common among families of all disabled children. As one constituent said: ‘Unless you shout and fight you don’t get anything. And, to be honest, I’d rather be spending that time with my child instead of battling the system that should be helping us.’