This website is becoming more of a campaigning site for disabled children, disabled adults and their families. If you want to contribute to the debate, please send me an e mail to firstname.lastname@example.org.
I organised a seminar this week in the House of Commons with Irwin Mitchell, the solicitors. The topic was 'Right to Care', and several brave mothers stood up and talked about their dreadful experiences in fighting to get the right support for their learning disabled children. Anne McGuire MP, the shadow minister for disability, spoke well, and clearly understood the need for change. Having listened to some of the speakers, she said that nothing seemed to have changed in the last 25 years. Esther McVey, the disability minister, did not turn up until just before the end, and therefore made no contribution to the debate whatsoever. Edward Timpson MP, who is the minister responsbible for disabled children in edcuation, listened to one speech, and then talked about the Children and Families Bill. Given that mothers had travelled from all over the United Kingdom, and many of them had had to make complicated childcare arrangements, it would have been at the very least polite for the government ministers to have stayed for the time that they had agreed to.
My MP, Greg Barker, has been a fantastic support. He understands the issues well, and sponsored the seminar in the Jubilee Room for me. He is also brilliant at facilitating meetings with the relevant ministers.
I have made three documentaries for BBC1 on various aspect of disability, and after each one have received an overwhelming response, mainly from parents worried sick about what will happen to their children when they are no longer around to fight on their behalf.
People with a learning disability may chronologically become adults, but, in most cases, will remain mentally as children. However, because of the current ideology that everyone is equal, and the assumption (because of the Mental Capacity Act 2005) that they are capable of making their own life-changing decisions, people with learning disabilities are being put out 'into the community' with insufficient support. They become lonely, and are 'befriended' by people who take advantage of them. They are bullied, sexually assasulted, have their benefits stolen and - in some cases - are murdered.
Yes, we are all equal in that we share a common humanity, but some are more vulnerable than others, and require looking after. Time and again I hear of families fighting to get their adult 'children' into a safe environment, only to be told by their Local Authorities that it is "their choice'" to live on their own: that it is "their choice" to choose what they want to eat - deliberately ignoring the fact that the person concerned is not capable of making such a decision.
Localism does not work when it comes to looking after people with a learning disability. Government needs to accept this, and to ensure that families in every Local Authority receive the same level of care and support. The postcode lottery is cruel, and unacceptable.
I have lost count of the number of families I have been involved with who have been to tribunal, who have fought to get a social worker, who have battled to receive the right direct payments. I have heard from mothers who have left their children in A&E, as they were not receiving the help they required. Mothers fighting to get more than 4 nappies every 24 hours for doubly incontinent teenagers, and having to prove 'inflow and outflow'.
Where is our compassion, and our commonsense?
What makes the Government think the learning disabled have a 'right' to live in squalor, weigh 20 stone or have all their teeth removed? - March 2012
Last week, I wrote an article for this newspaper, immediately in advance of my BBC1 documentary Letting Go. When I logged on to my computer early on Sunday morning, I was surprised to see that I had already received 20 emails from readers, and by Tuesday morning, when I travelled to London to appear on Woman’s Hour to talk about the issue, I had received more than 300.
'When will I be normal?': Heartbreaking question of Diana's Downs Syndrome goddaughter and her mother's fears of how she will cope alone - March 2012
Having been away for a few days, I walked into the house to be met by my 16-year-old daughter, Domenica, usually so happy and bouncy.
‘Why am I a Down’s Syndrome?’ was her greeting. ‘Why can’t I do maths?’ Followed by the most heartbreaking question of all: ‘When will I be normal?’
The tragic case of Gemma Hayter, a victim of 'mate' crime, shows how much is wrong with our so called care of people with learning disabilities.
Observations on the shortcomings in the draft Green Paper, which in my view need addressing.
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