Broken promises
Andrew Bomford's produced an excellent report for us this evening about the difficulties experienced by some families in getting the help they need with their children. Ella and Paul Barrow from Aylesbury have a 13 year old daughter Saskia who is deaf and blind. Six years ago the government made it a legal responsibility for local authorities to provide one to one help for families like the Barrows. But Andrew has learned that most families are not getting the help to which they're entitled.
here's a picture of Ella, Saskia and Paul.
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We all know what the answer will be when a representative from the local council is interviewed: "We haven't got the cash!" It's the same argument that is made in endless cases where well meaning legislation is put into place but the funding isn't there to meet the requirements.
Sadly, of course, the councils are in a no win situation here anyway. Firstly, they get penalised if they raise council tax above a certain point, and secondly council tax payers don't want to pay more anyway.
I think this is an example, along with other requirements (e.g. providing help in the home for the elderly), of things which shouldn't be funded locally, even though centralisation is deeply unpopular these days. It will still mean that the money has to be found, but it will take the local politics out of the matter.
They look such a happy loving family. I wish them well.
Thanks for publishing such a jolly picture of this family! I'm so pleased that despite their obvious struggles they are still able to have fun together. Saskia is very lucky to have two such caring and devoted parents, I wish them all well.
There are undoubtedly major difficulties for families with deafblind children, but there are problems for deafblind adults, too. There are very many elderly deafblind people who get very little support and poor understanding of their needs. (They are also likely to be unable to access the radio or internet to make their own comments on your item!)
It's so lovely to see such a positve picture, the poor girl. It is amazing how they still manage to communicate. Good luck to all of them!
We too have a deafblind son who is just nine, he has no hearing at all and has very limited sight. We communicate using "on body sign language" hard work but we are slowly getting there. Like Saskia our son gets nothing from social services you get promised the earth and then you hear nothing else. Thank goodness he goes to a brilliant school and gets a good educational package. Good luck to the family you are not alone.
Lindsey
This really is an appalling situation...
We are (supposedly) a society. Societies care for their own. Or, they used to.
A Deaf and Blind Child (and adults for that matter) suffer from (to put it mildly) a daunting combination of handicaps. Highly specialised help and training is required to bring the child, parents, family and friends to a level where the child can lead a fulfilling, non-frightening life and move-on to a "safe" adult-hood where at some time, immediate family might no longer be around to give care and support... A frightening prospect for parents, family and the "Child"
Local Authoritities are not in any way, shape or form financed or equiped to provide for the needs of these children and their families. Never have been. Fact
How MANY more Social Services squeels of the "there are lessons to learn..." variety do we have to listen to..?
This case is, unfortunately, one of several medical conditions which, in recent years, Central Govt has "passed down the line" leaving the financial and care responsibilty to grossly unprepared, inadequately trained and financed local Authorities
All I can do now, unfortunately, is what I have just done and that is e-mail my MP, the Minister for Health, Mr Brown and Mr David Cameron in the ever hopefull belief, that as human beings, their consciouncess will be stirred.
One lives in doubtful but eternal hope...
A % point off the Iraq war budget. Then what I wonder..?
Deafblind guidance has been in place for six years but is not being implemented for children by many local authorities. Without implementation Sense’s survey found most deafblind children are missing out on activities outside of school. We have been campaigning on this and would really like to hear from any other families in this situation. Please contact us at campaigns@sense.org.uk or on 020 7272 7774.