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
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
– Parents are woken up three times per night on average.
– 48 per cent receive no support from outside the family to help with their
– 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
– 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
Or from 020 7696 6900.
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
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
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.