Education & Family

Disabled children with behavioural issues 'hidden away'

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Disabled children in England with severe behavioural and complex mental health issues are being "separated and hidden" from society, a review warns.

The Council for Disabled Children (CDC) says these children should not be put into institutions at an early age.

Such a move costs the taxpayer dear and gives youngsters low ambitions for improving their lives, the CDC says.

However, the review, commissioned by the Department of Health, acknowledged ministers had not ignored this group.

It praised government initiatives brought in after the abuse of people with learning disabilities was uncovered at Winterbourne View private hospital near Bristol.

However, the CDC concluded there was no clear vision for the treatment of children with complex needs involving challenging behaviour, mental health problems, learning disabilities and autism.

It said a lack of accountability across a fragmented care system was depriving these children of their right to an education and community and family life.

A mother's story

"It was like my world fell apart. Eddie was young, all alone and being locked in a room," says mother-of-four Adele Hanlon.

"The feeling that I had failed him was overwhelming, and knowing I could not be there to comfort him was devastating."

Image copyright Adele Hanlon

Her son, Eddie, 17, has been diagnosed with autism, attention deficit hyperactivity disorder (ADHD) and dyspraxia and is being detained under the Mental Health Act.

He is currently being treated in a specialist hospital unit in Newcastle - 300 miles away from his home in Bristol - as this was the nearest suitable institution with a spare place.

"We are only able to visit monthly, and due to the distance we fly to the hospital," says Adele.

"He looks forward to a visit, but towards the end of his visit he becomes upset.

"When we leave he becomes distressed and needs a lot of additional support."

The CDC review criticised regional discrepancies in care provision for children.

"The current geographical spread of in-patient provision does not represent the population needs both in geography and in capacity," it said.

"There is no suitable placement available for young people living in London and the South East or throughout the South West."

The report also noted that affected children were more likely to come from poorer families and live in challenging circumstances.

'Hidden from society'

CDC director Dame Christine Lenehan said: "When I left practice in 1997, I could walk round my authority looking at small children and knowing that the chances of them going out of the authority area - often to a placement a considerable distance away, aged 11, 12 or 13 - was high.

"Their diagnosis at age two or before was the indicator to the challenges they would face, and yet they followed a path which institutionalised them during their teenage years and condemned them to a life hidden from society, away from their families, at huge financial cost to the taxpayer and with very poor outcomes."

Dame Lenehan said it was often an "act of last resort" that saw this group of disabled children sent away from their home communities into long-term placements.

"Hidden and separated from the rest of society, these children become special cases, for whom the aspirations we have for other children and young people don't apply," she said.

"We urgently need a shift in thinking."

A Department of Health spokesman said it was working to ensure more young people have the right support in the right place with its Transforming Care programme, and had invested £1.4bn in children and young people's mental health.

"But, we know that more needs to be done. That's why we commissioned this report, and we thank Dame Christine for her excellent work.

"We will be working with key organisations across health, education and local government to look at each of her recommendations in detail, and will respond fully in due course."

Sarah Lambert head of policy at the National Autistic Society, said: "The findings of this report will be deeply concerning for families.

"It's clear from our conversations with parents and carers of children on the autism spectrum with very complex needs that there's often not appropriate mental health support near where they live.

"Unfortunately, this means that far too many children have to travel long distances, or are admitted to hospitals far from their families, to get the specialist support they need."

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