Sunday, 26 April 2015

To the moon and back

We take it for granted that children with disabilities should be cared for within their own families wherever possible with state support, but we forget how recently this was not the norm. I was born in the early 1970s and at that time children who had Down's syndrome and other disabilities were still regularly taken into institutions as soon as they were diagnosed. Institutions were able to provide efficient care, meeting basic needs and sharing specialist resource, but at worst they masked systematic abuse, and a serious inability to meet the emotional needs of vulnerable children, as the work of Maureen Oswin exposed in the 1960s and 1970s. Her publications were instrumental in changing attitudes, and increasingly children with disabilities remained in the care of their parents.  

The fact is that no institution and very few temporary carers can compete with the fearsome love and dedication that parents of children with disabilities bring to bear in fighting for their child's best interests. I could easily fill a book with examples of parents doing incredible things to give their disabled children the best possible chance of achieving their potential and being confident and happy with themselves. In the face of daily exhaustion, constant criticism, low expectations and demoralising delays and rationing, parents fight on to get what they know their children need. We love them to the moon and back! And as for the parents who have been told "your child will never achieve a, b and c" who go on to prove the professionals wrong - I hear new examples of this every week.

The Chronically Sick and Disabled Persons Act in 1970 made the provision of welfare to disabled people of all ages a legal right, and until recently you would rarely hear any public questioning of the finances and services provided for people with disabilities. But times are changing. A report by the UK charity Contact a Family, of which I am a trustee, recently reported that 70% of parents of disabled children say they feel that the stigma of claiming benefits for their children has increased in the last two years. And more than 10% say that they have had verbal insults for claiming benefits from friends or family members!

It is far more expensive to bring up a child with a significant disability. Specialist equipment, like tricycles or car seats, costs around 10 times the "mainstream" alternative and is very often not state-funded. A higher proportion of relationships break up when disabled children are involved, so these higher costs are borne by a single parent. Holding down a job is difficult, with frequent medical appointments and challenges finding other people to care for your child outside of school hours and in the holidays. Most working mothers I know who have disabled children have either given up work, have not progressed in their careers or have started small businesses. Families are, everywhere, struggling to cope.

I have not seen any figures suggesting that more disabled children are now being given up by their families into state care again, but there are signs that we are moving away from inclusive education.  I do not believe for a moment that all children are best taught in mainstream classrooms, but my own quick examination of Wales's education data suggests that the trend, through the previous couple of generations, to educate more children with disabilities in mainstream schools seems to be going into reverse now. Special schools are growing and, in South Wales at least, are being moved onto sites next to one another for efficiency reasons - and fewer children are being taught in special units attached to mainstream schools. These figures could be partly a result of more children surviving with more complex needs, but I don't think that is the whole story.

The title of this blog is Dreaming Equality, but with an election coming up has anyone else noticed the topic of equality being given any airtime at all - whether that be disability or gender, race or religious equality etc? I'm often met with slightly embarrassed looks these days when I talk about disability equality for children in Wales. It's almost like these are old-fashioned ideas. Things seem to have changed quite recently.  And they need to change back.