My heart goes out to Riven Vincent. I wish her and all other suffering families, the very, very best of additional support.
But what happens when our special needs children grow up?
My 25 year old daughter went into supported living 3 weeks ago. She has M.E. and is on the Autistic Spectrum.
I had to request my MP's help before her PCP and SAQ were able to be presented to a panel to support her successfully to leave home, and even now, she hasn't seen either document. Finally support was agreed beginning of Dec 2010, having begun the irregular process November 2009. Our local authority agreed their weekly contribution. My daughter's weekly contribution is taken from her DLA and Incap Ben. This is the system her chosen provider adopts.
On 22 Dec I received a letter from our local authority asking my daughter for more of her money to contribute to the cost they had already agreed to pay. This would have taken all the remainder she had to live on and was unsustainable. It was instantly very serious. She was desperate to leave home, and had already been told by social services that she could. Her bags were packed.
Now my dilemma was 'do I tell her she can't go? or do I let her go and after 3 months tell her she can't stay?' With 3 days to go to Christmas I couldn't eat or sleep. My younger daughter was home from uni saying we had to make this Christmas the most special ever, because her sister was soon leaving.
I phoned our local authority on receipt of this letter and by great good fortune the director of services happened to be walking past the phone. At lunchtime on Christmas Eve he phoned me and apologised because the wrong coding had been keyed in. She had been classed as residential instead of supported living and we should never have had the letter.
I have since heard other people suggest that this mistake may have occurred in respect of other families, who may have suffered to their detriment because they didn't know they could query the payment request, or who to query it with.
I have no means of knowing their situation. I only know mine. It was inappropriate for the local authority to have asked us for that payment and if we had made it, rather than queried it, it would have been inappropriate for us to have paid it.
(As an addendum - my husband is due to retire on a teacher's pension soon and much as we will help our daughter in every way we can, always have, and always will, her supported living was calculated independently of us, financially.)
I'm seeing my MP in 2 weeks to ask why local authorities have the right to divert social care funding for disabled children and adults to other areas of expenditure. The govt have agreed a further £2bn for social care, so why are families with disabled members having these pressures?
Not only did we have the battle for our daughter's supported living funding with our local authority last autumn, but when central government, via the DWP, withdraws Incap Ben, which it's in the process of doing, and DLA - which is planned in future - then our daughter will have her own means of contributing towards her now independent living, taken away from her. So hey ho. It's not over even now.
We will have all the stress of re-applying for help for her again - and trying to make people we haven't met - understand her disabilities, on application forms subjectively designed to set us up to fail! Well, we will not fail!
When local authorities reduce support levels for families, and staffing levels in social services, this leaves families in already terrible circumstances even more stressed.
When the government reduce the quality of life of many disabled people by their approach to reducing the welfare bill which doesn't differentiate enough between the work-shy and the genuinely disabled, then families with special needs, be it children or adults, are between a rock and a hard place.
Atos, the body employed by the government to re-assess benefits for the disabled - has had 40% of appeals against its decisions, upheld. The DWP Harrington Review has asked the government to look again at their questionnaires and try and do better to understand disability and mental illness. Fortunately the government has agreed to do so.
It is a fight every step of the way, Mums. I'm writing this to encourage you to do it and never to give in. You will get there in the end.
I think Britain needs to ask itself where its collective social conscience is heading when students and disabled people are having the current levels of financial hardship thrust on them, which is happening at the moment. We're hearing this week that it's time to forgive the bankers and reinstate their bonuses at their full rate.
Would the bankers like to consider putting a very small per cent of their very generous bonuses into a fund for the disabled - and for students - so that those who are suffering more, disproportionately, to reduce the deficit, and those students who are coming up to being the young families of the future, aren't shouldering burdens currently set to shadow their lives forever?