About the lack of provision for people with learning disabilities (intellectual disability)

An article of March 2012, to read on The Daily Mail website:

Note: Learning disability in UK is the same thing than intellectual disability elsewhere.

What makes the Government think the learning disabled have a ‘right’ to live in squalor, weigh 20 stone or have all their teeth removed?

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.

They were all from parents of, or carers for, children with learning disabilities who had read the article.

I had hoped that my piece, about the lack of provision for people with learning disabilities, and the anguish faced by parents confronted with their own mortality and worry about what would happen to their children after they died, would provoke a  reaction, but I was not in any way prepared for the avalanche of messages I received.

Fearful future: Rosa with Domenica and her husband Domenic
Fearful future: Rosa with Domenica and her husband Domenic
 Reaction: Rosa received hundreds of emails from parents of disabled children after presenting a BBC1 documentary
Reaction: Rosa received hundreds of emails from parents of disabled children after presenting a BBC1 documentary

After the programme was broadcast on Tuesday evening, I received a tidal wave of emails. As I write, I have been sent more than 1,000, and they are still flooding in.

 I spent Tuesday night sitting in bed, reading the messages as they arrived. There is something  peculiarly intimate about total strangers sharing their stories with you. Any chance of sleep was forgotten, as I became tearful, enraged and totally immersed in the lives that unfolded before me.
The common themes were anger and fear. Anger at a system that totally sidelines parents, siblings and friends; anger at an apparently wilful misunderstanding of what it means to have a learning  disability; anger at the Mental Capacity Act of 2005, which assumes an adult with learning disabilities can make his or her own decisions unless it is proved otherwise; and parents’ fear for the future when there is no one around to fight on their children’s behalf.

It is difficult to imagine what these parents feel like unless you have  a child with a learning disability. Their vulnerability is heart-breaking. I can’t even count the number of parents who told me that all they wish for is for their child to die before them because they dread what will happen when they are no longer around to fight for them.

What I have discovered is that the provision is extremely patchy, and often the money granted by central Government is not being allocated. The £2?billion extra a year George Osborne announced for social care in 2010 is not ring-fenced.

Local authorities can repaint  their town halls with this money if they want.

This leads to a postcode lottery, with wildly fluctuating levels of service and care. There is the extremely dangerous assumption that people with learning disabilities are basically normal, and capable of understanding the consequences  of choices they make.

Fun in the sun: Rosa and Domenica pictured in London in 2004
Fun in the sun: Rosa and Domenica pictured in London in 2004

How can you encourage choice  if the individual does not have the reasoning to choose? We need realism, not idealism.

One mother wrote to me and said that I was the only person who she felt would understand the utter despair she was feeling. She told me that she just wanted to crawl into a corner and not come out.

Her daughter was due yet another assessment. A social services  manager who had not even met her daughter had proposed she be put  in a situation where she could  learn via ‘planned risk-taking’, and warned that social services did  not want ‘support provided to promote dependency’.

What plan? What risks? Do they think she will somehow learn how not to have a life-long learning  disability? This girl receives only five hours of support a week and the agency staff maintain that unless they are asked by their ‘client’ to clean up, cook, shop and so on, they won’t do it. The fact that their ‘client’ does not have the capacity to make these demands means nothing  to them.

Loving: Domenica with Diana Princess of Wales, who was her godmother
Loving: Domenica with Diana Princess of Wales, who was her godmother

It is her human right to live in squalor, not to eat properly or to have dirty sheets. It is truly unbelievable.

Another lady contacted me, saying that she was concerned about a young man living on his own whose mother, a close friend of hers, had died recently. She was so worried about his welfare that she took round a GP to see him, who promptly put him on medication. The council  carers reported her to the ‘Council Safeguarding Team’.

This young man’s mother thought she had put everything in place for her son’s future. Yet now he weighs 20 stone (his ‘choice’ to eat what he wants). He lives on sandwiches and fast food, and has nothing to do in the day.

The lady was concerned about his finances (he cannot read, and has no understanding of money). She asked the social worker who looked after his accounts. The reply: ‘Who looks after yours?’ The lady concluded her email by saying: ‘You wouldn’t treat a dog in the way that this young man is being treated.’

Music to her ears: Domenica playing bongos with Mr No Problem in Gambia
Music to her ears: Domenica playing bongos with Mr No Problem in Gambia

A father described his daughter visiting the dentist with her key worker. She ‘chose’ to have four teeth removed, rather than have root-canal treatment.

The father tried to explain to his daughter afterwards that you cannot replace teeth, and that if she continued like that she would have none left. He took it up with her key worker, who said she could do nothing about it because it was his daughter’s human right to make the choice. A choice that she was not capable of making.

All parents worry about what would happen if they died or became ill – what would their children do without them?

Rosa worries what will happen to Domenica when she dies
Rosa worries what will happen to Domenica when she dies

One woman wrote that she always says that she just can’t die, because she can’t bear to think what might happen to her daughter.

I don’t often have the courage myself to look ahead, and imagine my daughter Domenica’s life (she has Down’s Syndrome) without us to look after her.

It is something that has to be faced, but I just find it too upsetting and horrifying to think about. It feels like abandonment.

And finally, this email, which sums up what it is  like for so many: ‘I was a woman possessed. Mainly I was angry. Sooooo angry. Waiting for phone calls that never came, people always in “meetings” or on leave. Forever chasing things that I was told would happen and didn’t.

How you can join Rosa's crusade

‘I ended up as a liaison between different “services”, not only in a vain attempt to speed things up, but to get things done at all. Looking back, I was a mad woman. Sadly, anyone I speak to tells a similar story. We can’t all be wrong. We get words and platitudes, but the reality is shockingly different.’

What my article and the television programme has unleashed is a huge, articulate anger, an anger that has been hidden from view.

These parents and carers are not organised, they are not part of a union, withdrawing their labour (of love) is not a threat to the State, and they have nothing to bring to bear on the politicians.

They are a neglected and abused section of our society, and I am now more determined than ever to make this group the focus of my life along with bringing up my own children.

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