Thursday, 26 September 2013

Ed M : It's time Disabled Children's Parents got a Fair Deal too

Watching Ed Miliband at Labour Conference pledge 25 hours childcare and wraparound childcare for parents who work reminded me of the day Gordon Brown spoke of the first Sure Start Centres. A welcome sign of early years help for stressed out parents. With Cameron having axed approximately 576  Sure Start Centres since 2010, never has there been a time of such early years inequality for the poorest children, but likewise there has never been such a golden silence on the position of disabled children whose parents may like to work too.

To be frank, although 'New Labour' under Blair and Brown made huge leaps on childcare support, and Ed M is also looking to pledge more help, no party is talking about the plight that befalls us parents of disabled children at all.

My youngest son (youngest of 4) is autistic. He is only 10 months younger than my 3rd son and I had planned to return to work under Blairs government after a few years, as basically having the boys back to back, meant huge childcare bills back in 1998/99 which meant work did not pay at all. However my son's disability put paid to that initially and as he grew older I realised he thrived more with me 'on hand' than if I was working full time. I made that difficult choice to firstly stay at home and care then work part time self employed, even though it threw my family onto working tax credits and the poverty line. However, the vast majority of parents with children with profound disabilities have no choice but to stay at home and exist on the measly and quite frankly scandalous 'pay' of Carers Allowance at £59pw.

The problems parents of disabled children face are multi -problematic. If the choice is made to work, then who provides the care? Can you name specialist nurseries in your area that cater specifically for disabled children? I can't. Can you name any ordinary nurseries who have the specialist childcare knowledge of a range of disabilities that you would feel comfortable leaving your child with? I can't. Can you name a nursery prepared to take your disabled child? Again I can't.

And that is just for early years. So what are the options once your disabled child starts school (providing they are not so profoundly disabled that this is impossible)? Will an employer understand you having to leave work at the drop of a hat when a 'situation' has occurred at school? Is there a good quality breakfast/after school club that can cope with your child? The answer again is probably not.

And the cost? Nurseries/After School Clubs/Childminders are rightly justified in asking higher prices to cope with a child with a disability as it involves more input, more care and more patience! I certainly do not begrudge childcare providers asking/needing more money as looking after a disabled child is challenging for us parents! But we cannot afford these increased costs IF we manage to find a childcare provider.

And while a disabled child's peers sail off to High School and their parents heave a sigh of relief as childcare costs come to an end, at aged 11/12 this is not the case for the disabled child. They may need wraparound care until they are young adults! Again show me the list of childcare providers willing to take care of disabled teenagers at low cost? Hardly any or none at all most probably.

So I ask Labour and Ed Miliband to extend  childcare opportunities to parents of disabled children. Talk to parents of disabled children. For those where work is impossible due to the nature of the disability of their child, ask them what support could be given to improve their quality of life. After all, Andy Burnham is keen to get a One Stop Shop system of Health and Social Care.

It costs 3 x more to raise a disabled child than it does an able bodied child. Parents of Disabled children need more support, more options and the same level playing field of choosing to work if they want to as parents of able bodied children. Now is the time for Labour to start that discourse. Now is the time to act.