Views of disabled children are being routinely ignored, warns care study
"I always felt that I was being shunted around to suit other people, because I didn't fit in with them...it was me that had to move, not them that had to change the way they did things."
Stephen, 20-year-old former resident in a home for disabled children.
Disabled children are being denied the chance to lead more normal lives by care services that routinely fail to consult them and which too often separate them from their families, according to ground-breaking research supported by the Joseph Rowntree Foundation and the Who Cares? Trust.
The study examines the way that social services are fulfilling their legal duties towards disabled children. But it also reports the experiences of disabled young people themselves including those who have little or no ordinary speech. It concludes that children's views and feelings are often ignored and that lack of communication makes it possible for bullying and abuse to go unrecognised and unreported.
"When asked about the residential respite unit she made her 'No' sounds very loudly indeed." Meeting with Laura, 18, who communicates mainly by sounds, shouts and body language.
Although the 1989 Children Act states that disabled children who spend time away from their families must be consulted about their preferences, researcher Jenny Morris found that many social workers assumed the requirement could not apply to children who could not talk. Yet visits by Dr Morris and co-researchers to 30 young people provided a working example of how specialist skills and communication methods could be used to gather crucial information about experiences, views and feelings.
"I was miserable and said goodbye and gave her a hug and kiss and my mum went off and I felt very shy and it was different." Monica, who went away to a school for deaf children when she was 5.
The research found that some children were sent away to residential schools at a very young age and that placements were sometimes made for social rather than educational reasons. Children with multiple impairments and complex needs were the most likely to be moved away from their homes.
Young people who had been placed in residential homes and schools recalled their distress at being separated from their families, although some mixed sadness with recognition that others thought it best for them. Parents often found it difficult to visit regularly and, in a few cases, children had lost all contact with their families.
Those who had spent time away from their families in "respite" care as well as those in institutions expressed dismay at not being consulted, lack of privacy and disrespectful treatment by staff. A number of the young people described incidents of bullying or abuse, but most said they had not told anyone at the time.
Paul: ....and that bloke kept beating me up in there.
Researcher: He kept beating you up.
Paul: Yeah, he ran the place.
The study also found that many young people lacked access to a communication system that suited their needs and had no routine access either to people who understood the ways that they communicated, or to independent facilitators.
Jenny Morris said: "The painful and sometimes downright awful experiences that young disabled people described confirm that the basic right of children to communicate is being violated in a routine if sometimes unintended fashion. All too often, what happened to them had been determined by other people's reactions to their impairments, rather than their actual needs."
Local authorities
"She is unable to verbally communicate and therefore her view is not available." Social work assessment report
The companion study of practice in social services departments in three contrasted authorities uncovered widespread confusion and misunderstanding about the requirements of the Children Act. There was a general lack of accessible information about how many disabled children were spending time away from home.
The research found that most social workers had not recorded the wishes or feelings of disabled children who were being considered for placements away from their families. The majority of disabled children in contact with social services had communication impairments, yet social workers had rarely received any specialist training to help them.
The Act also requires local authorities to draw up formal care plans for disabled children on long-term placements and to review them regularly. Yet some disabled children in residential homes or long-term foster care were not recognised as being "accommodated" or "looked after" under the Act. A substantial number of reviews of children's placements appeared to be overdue.
The most common reason that parents approached social services for help was to request a short-term "respite" break from caring for their disabled child. However, many managers and social workers wrongly insisted that children receiving respite care were not being "accommodated" by the authority. The result was that no care plans were drawn up and placements were not reviewed.
It also emerged that some children were spending time away from home in short-term placement without any involvement or knowledge of the social services authority. Generally speaking very little social work was taking place with children using respite facilities.
Jenny Morris said: "The Children Act places a duty on local authorities to give disabled children the opportunity to lead lives which are as 'normal' as possible. Within the case study areas there were many people working for the local authority and in the voluntary sector who were committed to that philosophy. But the systems within which they were working often hindered rather than encouraged a child-centred approach. Services were still being delivered as if they were places to put disabled children, rather than giving them support they really need to lead ordinary lives."
Speaking at a seminar to launch the report (see below), Sir William Utting, former Chief Inspector of the Social Services Inspectorate and a Trustee of the Joseph Rowntree Foundation, said: "What makes this report so telling is the way that Jenny Morris has succeeded in transmitting - often in their own words - the thoughts and feelings of young disabled people about their experience of living away from home. Her research offers a powerful critique of how the provision for disabled children in the 1989 Children Act is working in practice. It shows there are important lessons to be learned by those who make policy as well as those who apply it."
The report will be launched, under embargo, at 10.30 for 11am, Tuesday 31st March 1998 Ort House Conference Centre, 126 Albert Street, London NW1 Members of the press are welcome to attend.
