Is boarding the only option?

What are the experiences of disabled children who attend
residential schools? The Norah Fry Research Institute has been finding out.
Here, Linda Ward, David Abbott and independent researcher Jenny Morris describe
their findings and messages for social services and education professionals.

"It is a very, very tough decision. The last thing you
want to do is send your eight-year-old son away to a residential school. We
still feel guilty."

"I thought… if I keep him at home I am just thinking
of myself, but if I send him to this school I am giving him perhaps the only
chance in life he is going to have. So I forced myself through that
bereavement."

These comments are from two parents of disabled children,
talking about their experiences of deciding to send their children to
residential school. Despite increasing commitment by the government to the
inclusion of children with special educational needs in mainstream services,
significant numbers of disabled children are still educated in specialist boarding
schools. Placements are often a long way from the child’s home and children can
be away at school for up to 52 weeks of the year. Clearly, such a situation is
far from ideal for the child or the family from which they are parted for such
long periods of time. So why are placement decisions of this kind made and what
are the experiences of disabled children who go away to school?

It was to answer these questions, and to look at how
effective the Children Act 1989 is in protecting the welfare of disabled
children at residential schools, that a research project was funded by the
Joseph Rowntree Foundation. In the first stage of the study researchers visited
21 local authority education and social services departments in England to
discover why residential school placements for disabled children were made.
Findings from that phase of the study were published last year.1

In the second stage, described in this article, the
researchers spent time in four English local authorities observing
decision-making panel meetings and interviewing key professionals, parents and
disabled youngsters.2

Views of parents
Contrary to the common perception of many professionals – that parents with
disabled children are keen for their children to go to residential schools –
for the overwhelming majority of parents in the study, residential school was
not a preferred option, but a very difficult decision to make.

Most parents spoke poignantly of the grieving process they
went through when their child first went away. Jane’s mother described how
"the first time she went she cried and I cried… we had to pull over in
the car because my husband and I were crying". But most parents felt that
however difficult their partings might be, it was ultimately the best way of
meeting their child’s needs, given the failure of local special schools to do
so adequately, and the lack of support for families at home.

Parents described the difficult, protracted and often
acrimonious nature of the decision-making process up to the point at which the
local authority agreed to a residential school placement. By this time they had
often reached "breaking point".

Views of children and young people
In addition to the 34 parents with disabled children at residential schools
interviewed for the study, visits were made to 32 of their children to find out
their experiences; through direct interviews (for 14 of them); or indirectly,
for the remaining 18 (where information was obtained by interviewing a key
worker and often a teacher, and by spending time with the child or young person
at school, and in some cases at home as well).

Somewhat perturbingly, most of the children had gone away to
school before the age of 11. Some had been keen to go to boarding school
because of their negative experiences in local special and mainstream schools.
Neeta, who is deaf, had had no friends until she went to residential school.
Peter too had had difficulties at his local school. He said: "A [boarding]
school like this was the only option – otherwise I wasn’t going to get an
education."

Almost all the children and young people who could communicate
indicated that they had been homesick when they first went away. Henry said:
"I was 10 years old. I have a picture of us (on the way to the school). I
was very homesick and crying a lot". They missed not only their parents
but also siblings, friends, "your possessions and everything… and
everything that is at home is much more comfortable than anything else".
This contrast between comfort at home compared with school was a recurring
theme.

Nonetheless there were positive things about the boarding
school experience – "I get physio more often"; "talking to my
mates was the best therapy I could have"; "it’s good, it’s the best
really. It’s small classes and the teachers are all well qualified."
Experiences at evenings and weekends were varied – for some youngsters leisure
time could be boring; for others it gave the opportunity for going out with
school friends, while for one girl it meant the chance of going out into the
school grounds in her wheelchair, on her own, for the first time in her life.

Almost all the children were positive about going home.
Gemma’s key worker said: "When her parents come to pick her up to take her
home you can just see the light on her face", while Ben’s mother said:
"He does enjoy coming home. He bounces about like a kangaroo. His face
lights up when he sees us so he really does appreciate coming back home."

Views from local authorities
Among the local authorities, ideological objections to residential
education, and concerns about its cost, were important factors in decision-making.

Attention to the needs of individual children was extremely
limited at panel meetings. There were often disagreements between education and
social services, inadequate information about children’s needs and
circumstances, and not enough time for a full discussion.

Decisions could be delayed for many months. And the majority
of education and social services professionals admitted that once a placement
was made, they would rarely know if children were safe and happy.

Messages for professionals
What are the key messages from this research for social services and
educational professionals?

First, the majority of placements at residential school are
funded solely by local education authorities who rarely have mechanisms, or
statutory obligations, to monitor the care and welfare of disabled children at
residential schools.

Second, social workers and their managers are unclear about
the legal status of disabled children at residential school (whether they count
as "looked after" under the Children Act) and expressed concern at
their lack of involvement with children funded solely by the education
authority.

Clearly, authorities should have an obligation to review
placements at regular intervals to check that they continue to meet all aspects
of children’s needs and to monitor their care.

Finally, the majority of professionals admitted that they
struggled to have any kind of meaningful relationship with the children given
the distances involved, the limits on their time, and their lack of training in
communicating with those who had communication impairments.

Linda Ward is director of the Norah Fry Research Centre.
David Abbott is researcher at the centre, and Jenny Morris is an independent
researcher.

References

1 D Abbott, J Morris, L Ward, Disabled
Children and Residential Schools
, Norah Fry Research Centre, 2000

2 D Abbott, J Morris, L Ward, The Best
Place to Be? Policy, Practice and the Experiences of Residential school
placements for disabled children
, York Publishing Services, 2001

Websites

Summaries of both reports are available free at www.jrf.org.uk – findings, nos 420 and
031.

——————————————————————–

Help in adversity

Home care is good at providing material support but how can
it be made to offer the kind of companionship and stimulation that isolated older
people need, asks Charles Patmore, a research fellow at the University of York.

Many social services departments have successfully developed
home care systems that meet the physical survival needs of very frail and
disabled older people so that they can continue living in their own homes. But
how well do social services address emotional needs or quality of life among
the same individuals? Longer life expectancy has meant extra years living with
long-term illness or disability and surveys have found high rates of depression
among those with serious physical health problems.

Older people’s morale is sometimes viewed as beyond the
reach of social services. But our recent research1 suggests broad
practical strategies for supporting the morale of frail older home care
clients, which will improve their well-being and their appreciation of the
services offered.

In a partnership between the social policy research unit at
the University of York and Bradford social services older people’s division,
in-depth home interviews were conducted with 30 randomly selected older home
care clients, half of whom were aged over 85 years. The interviews sought their
views both on their services and on general matters of importance. Local
managers of social services conducted interviews in the home of the older
people selected.

Three areas of life where interviewees were clearly most
dissatisfied were: "Getting out of the house", "Social
life", and "Sources of interest in everyday life" (see panel).
Interviewees described barriers to mobility such as arthritis, amputation and
fear of incontinence, while ageing and the death of friends and family had
reduced their social world. They also mentioned how eyesight problems or
arthritis were depriving them of valued hobbies such as knitting, needlework,
reading or writing. Some interviewees said that decline in vision made
excursions especially important, since this was one of the few activities that
they could still enjoy.

Good morale helped interviewees appreciate social services
care more than did those with low morale. Some interviewees had high morale
despite severe disability and conveyed praise and consideration for staff.
While they had criticisms, their general attitude was an attentiveness to good
things in their lives, including their help from social services and a feeling
that they were well cared for. Possibly their responsiveness to home care staff
encouraged the latter to give a more thoughtful service.

In contrast a few interviewees who were generally distressed
dwelled on the shortcomings of their services. These were mainly isolated
people and they did not easily form friendly relationships with home care
staff. Noticeable was the way they gave strongly negative satisfaction ratings
to all aspects of their life situations and their services. It seemed that, if
older people were distressed or depressed, they could not feel full benefit
from a home care service.

This matches findings from recent research concerning
surveys of satisfaction with social services.2 Low general life
satisfaction and problems such as loneliness, arthritis, feeling cold, and
depression were found to reduce older people’s ratings of satisfaction with
social services help. Also, our research noted how interviewees in one
catchment made consistently less favourable ratings about all topics in the
panel, as well as about social services, than those in the other catchment.
Satisfaction with social services may appear lower in localities where many
older people are isolated or poor.

Interviews suggest ways of supporting older home care users’
morale and satisfaction with life. Interviewees showed ways around losses
suffered through health problems, given suitable resources. Some interviewees
with mobility problems enjoyed drives in the country provided by relatives or
neighbours. Others were taken on such drives by workers from a small social
services relief service for family carers. One interviewee had benefited
enormously from an electric wheelchair.

Some of the managers who conducted the interviews noticed
opportunities for improvements in home care services. For instance, one
interviewer arranged successful repairs to the malfunctioning television of a
very disabled interviewee for whom TV was the main pastime. Another interviewer
arranged rehousing in a well-adapted ground floor flat for an interviewee who
was very depressed as a result of progressive arthritis.

The research highlighted the need for co-ordinated
programmes to reduce the impact of disabling health problems, using a mixture of
social services, health and voluntary sector resources. Responses need to be
tailored to each individual’s wants such as periodic excursions by car or help
with household chores – dusting ornaments or washing curtains – which an
interviewee’s disabilities now prevented them doing and which home care was not
allowed to provide.

Supportive relationships can support older people who are
undergoing adversities like loss of sight or bereavement. How might isolated
older people, who are known to be facing serious adversities, be given the
opportunity to benefit from a supportive relationship? Workers are needed who
are available on a more systematic scale than befriending services and who can
visit people who do not leave their homes. There is a case for developing such
social support functions among home care staff and sheltered housing staff.
Both already routinely visit frail older people in their own homes, and can
develop relationships through their ordinary duties.

Some of our most isolated interviewees indicated the sort of
extra social contact they wanted. Rather than finding company in day centres,
they wanted more contact with particular home care staff, whom they already
liked and trusted. Even interviewees who got on poorly with home care staff had
nevertheless noted particular workers with whom they wanted more contact.
However, this home care service was neither intended nor organised to provide
such relationships. Could home care services be developed so that staff are
assigned time to provide support when isolated clients are facing demoralising
adversities? Pay, conditions and support would need to be good enough to retain
appropriate staff.

Half these interviewees lived in sheltered housing and some
derived much support from daily visits from well-liked housing staff, who
sometimes also organised events and excursions. Sheltered housing staff seemed
well placed to provide social support. But neither social services nor
sheltered housing managers were utilising this potential systematically. It was
not necessarily the more isolated residents who received the most contact from
housing wardens. Nor did all housing wardens regard social support as part of
their job.

The strategies suggested here support standard eight of the
National Service Framework for Older People as steps to "promote mobility
and social contacts" and "reduce disability and ameliorate its
consequences in older people, particularly those living alone".3
The suggestions need careful testing because this is a complex area and we cannot
presume what would work reliably. And funding levels for community care need to
reflect the fact that frail older people, just like other client groups, might
need help with more than physical care if a care package is to succeed. These
interviews showed that good morale is possible for some older people despite
severe disabilities. Ways should be explored for helping those older people
whose morale is at risk.

Charles Patmore is a research fellow at the social policy
research unit, University of York, working on outcomes of social care for older
people, funded by the Department of Health. The views expressed are those of
the author and not necessarily those of the Department of Health.

References

1 C Patmore, Learning from Older Community
Care Clients
. Research Works Series, University of York, Social
Policy Research Unit, November 2000

2 J Chesterman, L Bauld and K Judge,
"Satisfaction with the care-managed support of older people", Health
and Social Care in the Community
, Volume 9, no.1, 2001

3 Department of Health, National Service
Framework for Older People
, paragraph 8.14, DoH, 2001

Websites

Social policy research unit can be found at www.york.ac.uk/inst/spru/

Interview topics

Twelve areas of daily living investigated during each
interview:

– Meals/refreshment.

– Shopping.

– Laundry.

– House cleaning.

– Household repairs/ decoration/gardening.

– Access to help in emergency.

– Feeling safe from crime and nuisance.

– Managing with money, bills, pensions, benefits and legal
matters.

– Personal care.

– Getting out of the house.

– Social life.

– Sources of interest in everyday life.

 

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