Dear Mrs May
As part of the #SEND30DayChallenge I am writing to you to raise a subject I am passionate about – social care support for young disabled people.
I’m not entirely sure that you know any young disabled people; certainly you give the impression that you don’t because there was no mention of them in either your party’s election manifesto or the Queen’s Speech, but that’s okay because I can introduce you to 2 very special young people…….
Nathan is 21 years old; he has been interested in politics since a very early age and is the youngest person to speak at a formal meeting at the UN in Geneva. He is currently at university studying politics and sociology, and his ambition is to be an MP.
Cerys is 14 years old; she loves her arts and crafts, and is just about to start her Young Leaders course at Guides. She would like to be a teacher.
Both Nathan and Cerys have spastic quadriplegia cerebral palsy and are full time wheelchair users, but this has not affected their sense of ambition (in fact I would say that all the young disabled people I know are the most ambitious and focused group of people I have ever met), but the fact remains that they need physical support in order to help them wash, dress (and yes toilet) and get out into society. Last summer was a very stressful time for us because both Nathan and Cerys were being reassessed for social care support. The support that provides them with Carers to help them to do tasks others take for granted, to have the independence that others take for granted. Nathan didn’t know if he would be able to go to university; not because he hadn’t got the grades or because the university weren’t prepared to support him, but because he didn’t know if our Local Authority would be allowing him to have a personal budget to cover the cost of a Carer to help him get around and with personal care. Cerys no longer wanted her dad helping to shower her. She also wanted to be able to go shopping and have some independence from her parents – just like any other teenage girl. We were lucky, after much gathering of evidence (including information from Disability Rights UK – https://www.disabilityrightsuk.org/) and writing of reports (from myself, Nathan & Cerys and Professionals involved in their care) we were able to secure funding to cover the costs involved in employing Carers. However, there are very many young disabled people for whom this isn’t the case. Many young people who have the potential to make a great contribution to society, who may never be given that chance because the social care funding just isn’t there to help them.
In a recent survey, the Disabled Children’s Partnership (https://disabledchildrenspartnership.org.uk/) found that 90% of parents of a disabled child said that health and social care is inadequate and 90% of parents say they have to fight to get the services their child needs. Let’s not forget that any child’s needs, whether disabled or not, change as they get older and want to become more independent. My daughter likes to shop with the best of them (which surely is good for the economy!) but she needs extra support to do that. My son hopes that one day he will earn enough that he can pay for his own Carers, therefore relieving the burden on the Local Authority, but he needs support now to reach that goal.
Apparently, 43% of people in Britain today say they don’t know anyone with a disability (source: Disabled Children’s Partnership) and 38% of parents say their disabled children ‘rarely’ or ‘never’ have the opportunity to socialise with non-disabled children (source: Scope, https://www.scope.org.uk/ ) – we can’t get these statistics to change without social care support being in place e.g. Cerys goes to Guides with non-disabled teenagers, but she needs support to do that. Maybe, Mrs May, you haven’t had an opportunity to get to know someone with a disability or never played with someone with a disability as a child – I don’t know, but I suppose it could explain why there is such a huge gap in policy towards social care funding for young disabled people.
I appreciate that you are probably feeling that life has gone a little ‘pear shaped’ for you since the election, but when you become the parent of a disabled child it can feel that life has gone more ‘banana shaped’ and you suddenly understand what it is to have to fight for what is right for your child. The right support will mean that disabled young people in this country can make their contribution which can only be a good thing. You surely can’t argue with that?