A new report from Mencap calls for an overhaul of support services for
carers. Ruth Winchester reports.
(A full copy of the report is available online - see below)
"At the end of the day, people thought my sons were worthless, utterly worthless," said Ron Turnbull, after his wife was convicted of the manslaughter of their two profoundly disabled sons last year. "I thought they were very special."
His words will strike a chord with many parents looking after children who have profound and multiple learning difficulties. A new report from Mencap, 'No Ordinary Life', suggests that these families are having to deal with the multiple burdens of severe disability, public ignorance and hostility, and professional disregard for the value and individuality of their children.
Mencap figures suggest that the number of people with profound and multiple learning difficulties has increased during the past two decades from approximately 25,000 in 1985 to nearly 40,000 now - predominantly as a result of improved care for premature babies and better life expectancy for people with profound disabilities. The majority of these people are living at home with parents who provide most of the support they need. Many need round-the-clock care with basic tasks such as toileting and feeding, and may be reliant on technology such as tube feeding and oxygen.
But while parents offer this support unstintingly, the report's findings suggest that services for these families need an urgent overhaul. Carers routinely spend more than 18 hours a day caring, yet receive an average of just 20 minutes a day of outside help - help that they are sometimes expected to pay for. This is particularly galling for families whose caring may be saving the state £50,000 to £150,000 per year.
The report does highlight some very good practice. But it also highlights recurrent problems. Families are sometimes wary of using services outside the home because of bad experiences, including their children returning from respite or day care with dehydration and pressure sores. Others are desperate for help but are blocked by a lack of staff, an absence of essential equipment or unworkable hours. Many more have been assessed as needing a service but are still waiting for it to be provided.
Parents also report significant difficulties during the transition from children's services to adult services. One parent explains: "On the last day of Jodie's 17th year she was a highly dependent child needing a high level of input - respite, home care, social workers, equipment. The next day, her 18th birthday, she had nothing. Everything was withdrawn. She did not exist."
The report argues that services are rationed according to who is "at risk" - and that because neither those being cared for full-time by parents, nor the carers themselves, are regarded as at risk, other priorities dominate. And even when appropriate services do exist, families say it is an effort to find out about them, despite legislation requiring local authorities to provide information.
Unfortunately for this minority within a minority, things may not improve with the implementation of a white paper, published in March. While Valuing People: A New Strategy for Learning Disability for the 21st Century has been warmly welcomed, there are concerns that its emphasis on independence, autonomy and choice for the majority may focus attention away from those with the most severe disabilities, and result in the closure of some of the services these families value most.
Key findings of 'No Ordinary Life' report
- 60 per cent of parents spend more than 10 hours per day on basic physical care.
- Parents are woken up three times per night on average.
- 48 per cent receive no support from outside the family to help with their care.
- 78 per cent receive either no support or less than two hours per week to help them care at home.
- 48 per cent are dissatisfied overall with the services they receive.
- 80 per cent think the professionals are poorly or very poorly co-ordinated.
- 37 per cent have contact with eight or more professionals.
- 54 per cent of parents would like to see their grown-up son or daughter move from the family home to a high-quality alternative.
- 61 per cent have received no support in planning for that possibility.
A full copy of the 'No Ordinary Life' report can be downloaded by clicking here
Or from 020 7696 6900.
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The murder of an 11-year-old boy by an 18-year-old with a record of sex
offences has prompted calls for specialist treatment facilities for young
abusers. Mark Hunter reports.
Each year around 500 children aged between 10 and 18 are convicted of sex offences in England and Wales. Most are subsequently placed under supervision orders in the care of their local authority, placing an immense strain on social services departments. A woeful lack of specialist treatment facilities for young sex offenders means that many are simply "contained" in flats to be supervised by a team of up to 10 carers working shifts.
The specialist care that is available is of variable quality, unevenly distributed around the country, and provided on an ad-hoc basis by the NHS, voluntary agencies and the private sector.
It is a system constantly on the verge of collapse, and whose failure can be catastrophic.
When 18-year-old Dominic McKilligan attacked and killed 11-year-old Wesley Neailey in a Newcastle garage four years ago, it was the tragic culmination of a series of errors in the system dating back nine years, spanning 400 miles, and involving three councils, 16 agencies and more than 200 staff.
McKilligan had been known to social services since he was nine. He had sexually abused a number of children before his 14th birthday and was discharged from a specialist unit for young sex offenders just nine months before Neailey’s murder.
The review of McKilligan’s care, commissioned by Bournemouth, Durham and Newcastle Councils and published last week, records a catalogue of failures by the three social services departments involved (see panel). The councils have all accepted the report’s findings and, in a joint statement, have outlined action plans developed by each area child protection committee.
"Systems of record-keeping have been improved; ways of exchanging information and improving inter-agency communications - particularly when there are considerable distances involved - have been improved, as have post-discharge and aftercare arrangements for young sex offenders leaving care," says the statement.
However, the recommendation expressed most strongly in the report remains unaddressed. For while it pulls no punches when criticising individual system errors, the report saves its most caustic criticism for the UK’s poor provision of specialist services for young sex offenders. Assessment services are "insufficient", there is "minimal" provision of properly resourced remand facilities, and "when it comes to treatment the position is bleak", it states.
"Skilled, well-resourced treatment facilities are few in number and do not even begin to meet the need. As things stand, almost anyone can set up a treatment facility with little in the way of regulation to prescribe their operations. Because of the lack of suitable treatment facilities, courts may use supervision orders as a form of disposal without treatment."
According to report author John Fitzgerald, chairperson of the review panel into the McKilligan case, there is little point criticising individual care professionals for their failure to communicate between agencies when the system makes it virtually impossible for them to do so.
"It’s not going to change by writing a report exhorting professionals to do better," he says. "If it was as easy as that then we would have solved the problem a long time ago."
Fitzgerald believes only a nationally co-ordinated strategy involving health authorities, social services, police, and education departments can achieve the kind of inter-agency co-operation needed to prevent young abusers going on to become sex offenders as adults.
"Currently, there is no national strategy and as a consequence there is no consistency in terms of care arrangements, treatment methods or staff training," the report states. "There’s no single inspection or regulatory system and there’s no geographical consistency."
But can sexually abusive behaviour be successfully treated?
Children’s charity the NSPCC says that its work with young abusers - some as young as five years old - has shown that intervention can be effective provided the behaviour is addressed at an early enough stage, preferably before puberty.
The charity estimates that around a third of all child sex abuse is committed by other children or adolescents, most of whom have themselves been subject to either violence, sexual abuse, or both.
However, while treatment may reduce the risk of a young abuser re-offending, the McKilligan review makes it clear that assessing this risk is far from an exact science. This is especially so when trying to predict the extremely rare occasions where a young sex offender goes on to kill.
With hindsight it is easy to claim that those in charge of McKilligan’s care should have identified the danger he presented. But the clinical tools available to make such an accurate assessment simply do not exist.
So what can be done to protect the public from predatory paedophiles?
The government might claim that the introduction of the sex offenders’ register under The Sex Offenders Act 1997 has offered protection. Indeed, much has been made of the fact that McKilligan left his residential unit the day before the sex offenders’ register came into operation.
However, Fitzgerald says that it is debatable whether McKilligan, who was only ever subject to a supervision order, would have been placed on the register anyway. "It was not a placement in which he was locked up," Fitzgerald says. "It was an open unit so he was never released. He was discharged and was free to move into the community."
The fact is that, while improving the provision of care for young abusers should reduce the re-offending rate and the number of adult sex offenders released into the community, it is impossible to say whether any of the recommendations in the McKilligan review would have prevented Neailey’s death. Certainly Fitzgerald is reluctant to make this claim. "But," he says, "if we learn the lessons from this sad case we can go a long way to reducing the risk."
The McKilligan case
- January 1990: Dominic McKilligan, aged nine, first comes to the attention of Dorset social services after going missing from home. His social worker describes him as a "very sad little boy".
- July 1990: McKilligan enters a special school for children with emotional and behavioural difficulties.
- August 1993: police investigation of a burglary carried out by McKilligan reveals allegations of sexual abuse against an 11-year-old boy. A subsequent police and social services investigation leads to allegations or concerns of abuse against up to 20 children aged between four and 12.
- December 1993: McKilligan arrested and placed with foster carers.
- May 1994: report commissioned from the Young Abusers Project states McKilligan poses a high risk to children.
- August 1994: McKilligan convicted of 12 specimen charges and placed under a supervision order at Collingwood House, Aycliffe Young People’s Centre, Newton Aycliffe in County Durham.
- 1994-1997: McKilligan does not commit any further offences while at Aycliffe and his level of concerning behaviour declines, although is still regarded as abusive.
- 1997: McKilligan applies for a place on a music and arts course at Newcastle College. His reference from Aycliffe makes no mention of his history of sexual abuse, referring only to "behavioural problems".
- September 1997: supervision order expires and McKilligan discharged from Aycliffe with no formal discharge plan in place. Moves to Newcastle but remains legal responsibility of Bournemouth social services until his care order expires on his 18th birthday (14 November, 1997).
- November 1997: Bournemouth social services inform Newcastle social services that McKilligan is living in their area, two and a half months after his discharge from Aycliffe.
- January 1998: Aycliffe refuses request for information on McKilligan by Newcastle social services.
- February: Newcastle receives information on McKilligan (promised in November) from Bournemouth social services.
- June 1998: clinical psychologist who wrote McKilligan’s post-treatment report is not available to answer inquiries from Newcastle social services.
- July 1998: the body of 11-year-old Wesley Neailey is found one month after he went missing from his home in Newcastle. McKilligan arrested.
- July 1999: McKilligan convicted of Neailey’s rape and murder.
- November 1999: rape conviction overturned on appeal.