I still can’t quite believe it. In the last 7 months I have been to the Houses of Parliament twice. I wouldn’t have been once had it not been for this little blog. The first was for an event to mark World Prematurity Day. The second time was last week, when I was invited to be one of 6 witnesses for the Parliamentary Inquiry into Childcare for Disabled Children cross-party select committee, which is being led by MPs Robert Buckland and Pat Glass.
I have been meaning to write a post about this since we went. I want to write it, in large part, to thank Every Disabled Child Matters, Contact and Family and Working Families UK for all their hard work in pressing this issue and getting parents of disabled children and young people with disabilities heard. But every time I have tried, I have been too overwhelmed by the task. Speaking in Parliament is one thing, writing about it, apparently, is another.
I guess I haven’t quite processed it all yet. It was a highly emotional afternoon. I met, for the first time, a number of women I feel I know already through this fabulous online community. I had to introduce myself as Mrboosmum to people who know more about me than many of my real-world friends and colleagues do. I met Katherine, whose posts on disabled childcare over at Orange this Way have made me cry and punch the air on more than one occasion. I met Hannah (and Rosy!), from Rosy and Bo, who has always been there with a metaphorical shoulder for me to cry on on Twitter. And I met Mama Lewis, whose blog has taught me more about cerebral palsy than any book or any one individual ever has and whose determination and love for May has inspired me for the past 2 years.
I felt privileged to be in the company of these women (and others) and to meet some of their children. In fact I felt rather more privileged in this, if I’m honest, than to be in our august seat of political power (despite my love of history and interest in politics).
But I also felt a weight of responsibility. I think we all did. Because each of us knew that the battles we faced in getting our children into nursery or a breakfast or holiday club so that they could exercise their fundamental human right to an education and we could satisfy our need (whether that need be financial, emotional or intellectual) to work were just the tip of the ice berg. We could only speak for ourselves, but we were being asked to speak for so many.
There is a fine blog post here by Richard Dunstan of Working Families UK that summarises some of the many substantive points that were raised in the afternoon, and I urge you to read it. I won’t and actually don’t think I can yet go through it all here. It’s too much. You see the MPs and peers shook their heads and told us our experiences made for difficult listening. There was shock in the room and there were damp eyes. When accounting for your life makes other people react like that, it’s a deeply unsettling experience, I can tell you. I simply haven’t come to terms with it yet.
But of course, these reactions are what made the day so important. All of us witnesses live and have lived in different local authorities. All of us experience ourselves or have children with different needs. But we sung with one voice. LA provision is patchy at best. Money to support children with additional needs in daycare settings (whether pre-school or pericurricular) is not ring fenced. It is administered with great disparity across the UK in ways that can seem variously bureaucratic, ineffiecient or deeply prejudiced. Disabled children and young people are rarely treated as individuals. They are often talked about as problems or headaches. Or much worse.
We talked about things that had been said about our children. Things that had been said by people working in or for LAs. I can’t repeat them here because I don’t want to think about them today. (Problems with Boo’s nursery and entering the statementing process means all this is unusually raw for me at the moment.)
But suffice it to say that everyone agreed there were a host of problems that needed to be addressed. But of course, they cost money. And of course we had all thought about this, and every one of us had a response to this. We did the maths, for example, on the cost of paying carer’s benefit (and the state not receiving our taxes) versus that of statutory 1:1 provision for disabled children in a daycare setting. We compared the extraoridnary costs of our children living in residential care as young adults because they had been denied access to educational programmes when young that made living independently or with minimal carer assistance possible. We compared the cost of expensive medical procedures for, say, tube feeding versus skilled professionals teaching children to eat from a spoon.
The word powerful is overused these days, I think. But if this testimony wasn’t powerful, well … I don’t know what is.
Evidence for the Inquiry is still being collated and a report is being compiled for ministerial consideration in early July. I don’t know what will come of this. I am hopeful the Inquiry along with the new Code of Practice and the launch of EHCP will make a difference. But of course, even though I have only been living this SEN life for 2 years, I know to be on my guard. I am used to false hope and promises. I am used to the world turning fast in all but the most important things in life, which move glacially, if at all.
But I take a great deal from last Tuesday, nonetheless. I can see that people care. I can see that people can’t change things they don’t know about. And they don’t. They really don’t know how things are unless we tell them.
And I can see that while we may feel kicked in the teeth and guts on regular intervals, young people with disabilities and their parents are a formidable, compassionate and resilient bunch of people. Underestimate us and our children at your peril. We have to be heard and we will be heard. Our kids deserve nothing less.