The worry I have about J's future as an adult is always rattling around my head. What would happen to him if he lost all his family? One always hopes he would be placed in a loving and caring residential home, for the rest of his life, but as Ms Monckton rightly explains, the 'system' in this country is patchy, unreliable, and in some cases, downright irresponsible.
The link to her article on the Daily Mail website is Here
You can read the comments left by other readers on that link.
I have copied and pasted the article below as well.
Sex abuse... even murder: How human rights are putting the mentally disabled in deadly peril
By Rosa MoncktonLike a lot of men in their 50s, Mark was starting to experience a certain itchiness in his feet as he reflected on his life and identified certain areas with room for improvement.
Having lived in the same home since his teens, he wondered what it would be like to be elsewhere. In Buckingham Palace perhaps, with Mick Jagger and Cheryl Cole. Or maybe he could share a flat with Frank Sinatra?
Mark has Down’s Syndrome and, as charming as his suggestions are, his family knows that he doesn’t actually understand the implications of what he is saying.
He has lived happily in the same residential facility for his whole adult life. It was only following a disagreement with one of the other residents that he told his carer, in a fit of pique, that he wanted to move out.
His local authority is now trying to move him into what they call ‘Supported Living’ — that’s out in the community, with just two hours of support a day — because Mark’s carer told them unequivocally that if that’s what Mark wants, then that’s what he should get.
The social services team responsible for Mark held a meeting without any of his family being present, and have made it clear that they see this move as Mark’s choice.
His sister wrote to me after seeing my BBC1 documentary, Letting Go, last year, in which I highlighted the terrible problems facing vulnerable adults left to fend for themselves. Understandably, she was distraught at the implications for her brother.
‘He’d never survive,’ she said. ‘He needs constant supervision just to keep himself and his room clean.
‘He can’t cook, and has no understanding of money, time or the day-to-day realities of life. He lacks the mental capacity to make rational decisions about important issues concerning his care and wellbeing.
‘Basically, he would go off with anybody, drink Fanta all day long, and live in complete squalor.’
Mark’s sister is not alone. For these are very valid fears I am hearing from many other families of people with severe learning disabilities who find themselves cut loose — in the name of so-called human rights — the minute they reach adulthood.
The drive to force these vulnerable people out on their own leaves them exposed to abuse, exploitation and even murder.
This week, I am holding a seminar in the House of Commons with the solicitors Irwin Mitchell. Ministers and shadow ministers will be attending.
The speakers are mostly parents who will talk about the battles they face to get the right support for their children, who are often heartbreakingly naive even when they have technically become adults.
This is a subject very close to my heart, as my daughter Domenica, who has Down’s Syndrome, becomes an adult in June. She may have 18 candles on her cake, but I know, and everyone who loves her knows, that she is still a child — and will always remain one.
Her future is now our main concern as a family. Where will she live and how will she be looked after?
She wants to stay at home for ever, but people with Down’s Syndrome often live into their 50s and 60s, and we, her parents, will be long gone by then. The thought of her ‘out in the community’ gives me sleepless nights. She is, after all, an eternal innocent.
My worries are compounded when I hear stories like that of Jane, a mother of two daughters, aged 18 and 19. Both girls have severe learning disabilities but are terribly strong-willed. Understandably, Jane wanted them always to live at home, but they decided they wanted to leave and strike out on their own.
Jane’s local authority placed the girls into hostels because, they said, it would have been against their ‘human rights’ to keep them at home. One of them, the elder daughter, ended up 200 miles away, staying with a friend.
Jane did her best to keep an eye on the girls from afar, but within a few weeks the elder daughter was thrown out of her accommodation in the middle of the night for ‘anti-social behaviour’ and ended up in the local police station.
The younger daughter, meanwhile, ran away from the hostel where she was staying and turned up back at home — eight months’ pregnant. Two weeks later, social services rang Jane to deliver more bad news: not only had her elder daughter got into a violent relationship, she too was pregnant.
Only after such terrible damage had been wreaked on their lives did social services admit that Jane’s daughters needed to come home.
Jane gave up her job and had to move to a larger house to accommodate her two daughters and, eventually, their babies.
After three months, a social services’ teen pregnancy team came to visit. Unbelievably, they concluded that Jane was doing too much for her daughters and said they should be living in state-sponsored mother-and-baby units. Once again, under the mantra of human rights, the girls were encouraged to leave home.
Both ended up living in hostels with their babies. Tragically, and predictably, the girls were unable to look after the babies, who were then removed by social services.
Jane has become the official guardian for one of her grand-children. For reasons she didn’t go into, the other child has now been adopted — a heartbreaking and totally avoidable situation for all.
Meanwhile, to Jane’s dismay, her daughters still live in chaos. But social services continue to insist they are capable of living alone.
I spoke to Jane recently after she had just been to visit one of the girls. ‘The place stank,’ she told me. ‘The toilet was blocked and overflowing; there was no food in the kitchen; there were filthy mattresses, with no bedding, on the floor — and two strange people asleep on them in the middle of the day.
‘My daughter is unwashed and she smells. It is clear that she is not capable of caring for herself.
‘Her flat is being used by local youths as a place to hang out and the police are always being called. She will have sex with anyone who is nice to her.
‘And yet I am being told that it is my daughters’ choice to live like this, although I, as their mother, know that they are not capable of making such a choice. They need proper looking after.’
Jane, meanwhile, has been forced to live on benefits. Not only is she looking after her granddaughter, but she has to visit her daughters nearly every day — a round trip of 25 miles — to take them food in a desperate attempt to keep some normality to their lives.
‘I am not allowed to make any decisions,’ she said. ‘It is against their “human rights”.
‘I am at my wits’ end. The girls need someone to help them. Someone who can make sure the washing up is done, that they have a bath, clean their hair, eat decent meals. Someone who can take care of their money and keep them safe. How can social services consider this “too much” support?’
All this trauma is caused by one simple fact of law: the Mental Capacity Act (2005), which assumes adults have mental capacity until proved otherwise. It was designed to protect elderly people, but has had dreadful consequences for people with learning disabilities.
Up to the age of 18, people with a learning disability are, like their peers, considered children. But after 18, state provision for people with learning disabilities treats them as ordinary adults, and as if they were as capable as the rest of us of making rational decisions. It has created a ridiculous and dangerous situation.
This transfer from child to adult social services for people with a learning disability is both terrible and pointless. Nothing changes. A lifelong learning disability is exactly that: from cradle to grave. Although they have reached the age of chronological adulthood, they are not really adults.
We need a policy that differentiates between physical and mental ability, and an acknowledgement that for people like Jane’s daughters — and indeed Domenica — their condition is not going to change.
All the forms that I have had to fill out, time and again, for my own daughter to receive the assistance she needs assume that the passage of time might have brought a change in her condition — which as everyone knows, is utterly ludicrous. Is there a cure for Down’s Syndrome that I have not been told about?
Aside from this, there is also a pervading ideology that everyone is equal, and that it is a ‘human right’ to live on your own and to make your own choices — even if you are desperately vulnerable.
Aristotle’s quote has never been more relevant: ‘The worst sort of inequality is to try to make unequal things equal.’
Of course, the ideology of the ‘human right to live an independent life’ is conveniently underpinned by the fact that it is cheaper for local authorities to have people out in the community rather than in a sheltered
residential setting. If people remain in residential care, the local authority pays the whole bill. But out in the community, the housing aspect of care is funded by central government.
This ill-informed mindset, driven by profit margins, only puts disabled people at risk. Free to roam the streets, surely we cannot be surprised that hate crime against the disabled is on the rise?
The isolation and loneliness of people with learning disabilities living in the community makes them vulnerable to people ‘befriending’ them — only for their new ‘friends’ to steal their benefits, sexually abuse them, and worse.
One of the speakers at the seminar I have organised will be Sue Hayter. Her daughter Gemma had a learning disability yet was put out in the community with no support. She was dirty and unkempt, had money stolen from her and was constantly sexually and physically abused.
After the documentary, Gemma’s sister wrote to me in despair, saying that she’d been to social services to complain, only to be told: ‘Who are you to tell your sister that she can’t live like this?’
A neighbour of Gemma’s said: ‘She wanted to be accepted so badly that she would put up with anything.’
Gemma was attacked and murdered in 2011 by people she thought were her friends. When her body was found, she had more than 50 injuries and her head had been shaved. A few years before her murder, Gemma had been raped.
Sue told me: ‘I sometimes wonder whether she was conditioned to being abused. So many things have happened in the past that it makes you wonder if she thought it was normal for people to abuse her and take advantage of her.’
Even for those parents whose children remain at home, the worry never dissipates. I have received many letters and emails from parents in their 70s and 80s, confronting their own mortality and worrying themselves to an even earlier grave about their adult ‘children’ and where they will live.
Thankfully, Domenica still lives with us: a vulnerable little girl in the body of a young woman. Just watching her, I am constantly aghast at how anyone could ever consider her a competent adult, capable of safely leading an independent life.
Only last week, she went for a walk and got lost in the woods near our house. We have lived here since she was two, and she was still unable to find her way home.
After police searched the area on foot and by helicopter, she was found in the garden of a house about a mile away from where we live.
She told me: ‘I thought it was our house, until I saw a slide in the garden. We don’t have a slide.’
How could she possibly ever live on her own? She is happy girl and dances through her days, but she knows now that she is different, and that there are things that she will never be able to do. She is frightened of becoming older.
As her 18th birthday approaches, she seeks constant reassurance that she will always live at home. A reassurance I wish with all my heart that I could give her.
Some names have been changed.
