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Summary
The new policy in England says people with learning disabilities living with
parents over 70 are very important.
People with learning disabilities and their parents are usually happy living
together as they get older.
These families don’t always get the help they need. This is because services
don't always know about them or don't know how to provide the right kind of
help.
These families also worry about what will happen in the future. Services need
to make sure they can make plans that families are happy with.
Services are going to have to work hard if things are to get better for these
families. They will need to treat these families with respect and make sure
they don't spend all their money on younger people and younger families.
Introduction
People with learning disabilities living with older family carers are one of
the key priorities identified in the new White Paper, Valuing People. Local
authorities are expected to identify all family carers over 70 and by 2004 to
have agreed person-centred plans for all their relatives with learning disabilities.
Part of the £50m implementation fund is earmarked to allow supported living
arrangements to be an option for these people. The White Paper also encourages
older family carers of people with learning disabilities to be included in generic
carers' initiatives. This paper looks in detail at what is proposed and the
challenges to offering older family carers confidence in the future.
The situation older family carers find themselves in excellently represented
in the report 'Uncertain Futures' (Walker & Walker, 1998). The future is
their greatest concern - the White Paper estimating that up to 25% of their
relatives only become known to services when they become too frail to continue
caring. Older family carers have been a major area of concern of the Growing
Older with Learning Disabilities (GOLD) programme at the Foundation for People
with Learning Disabilities. In view of this it was good to see older family
carers emerge as a priority in Valuing People.
In many ways the reasons thing are so difficult now for older family carers
are a direct result of the last White Paper 'Better services for the mentally
handicapped' in 1971. The concentration on the closure of hospitals has meant
that relatively little attention has been given to those people with learning
disabilities living with their families. This is evident from the very limited
increase in residential provision over this period. Many older families have
thus become use to having little support. Younger parents have fared slightly
better. For example, their children (those under about 35 now) have had a right
to an education which was denied to many older people.
Making older family carers a priority in the White Paper was in some ways a
pragmatic response to the widespread neglect of the concerns of families identified
in Family Matters, which was published alongside it. Time is of the essence
for older carers for obvious reasons.
Supporting older families
There are two elements to supporting older families: support for their current
caring role and support for the future.
1. Support for now
Older family carers are generally not looking for an early opportunity to relinquish
their caring role. This is a consistent message from, for example, the Sharing
Caring Project in Sheffield which is leading the way in working with older family
carers. It is also the case that their relatives with learning disabilities
are generally happy living in the family home and are not looking for an early
exit. This was found in a research study undertaken by Wandsworth Rathbone as
part of the GOLD programme. Indeed many older family carers are dependent on
practical and emotional support from the person with learning disabilities,
whether that be, for example, company or carrying the shopping. What older family
carers largely want is support so that they can continue caring for as long
as possible, and definitely until an acceptable alternative is available.
Many older family carers currently don't get any support from services because
they are unknown to those services. It is therefore good to see the White Paper
encourage local authorities to find these families. The White Paper says there
should be a complete picture of the number of older carers over 70 and proposes
a performance indicator of the percentage of these for whom a plan has been
agreed. There are a number of problems with this.
a) Finding carers
It seems short sighted for local authorities to only be obliged to collect
data on those people with learning disabilities living with older family carers
rather than everyone if they are going to plan services effectively. The success
of the Sharing Caring Project in Sheffield is partly due to the existence of
a register which has collected information consistently over 27 years. This
enabled contact with older families who were not using service but who had previously,
and a confident assertion that they are in touch with most older family carers.
Finding just older family carers is inefficient in the long term, because carers
get harder to find with age largely because their contact with services (if
any) is likely to diminish over time. There is a danger that if individual carers
turn out to be say, 65, they will not be remembered in any useful way. When
they reach 70 they may have to be found again - and often they won't be.
b) Matching the plan to carer's needs
The White Paper's suggested performance indicator is an attempt to judge whether
older carers are getting the support they need. However the link between having
a person-centred plan and useful supports is complex. For example, a recent
study of carers assessments given to the family carers of people with learning
disabilities found that very often the support recommended was not provided
(Robinson and Williams, 2000). Inevitably central government's monitoring of
the services provided by local authorities are likely to be blunt instruments,
but there could be better ones here which would give a greater confidence about
older families getting support which makes sense to them rather than what might
be just a person-centred wish list. Another of the proposed performance indicators
is the percentage of adults receiving short term breaks. Breaking this down
by age of family carer would be a relatively easy way to see how well older
family carers were being supported.
Encouraging the inclusion of older family carers in the National Carers Strategy
in general and the opportunities afforded by the Carers Grant are important
policy statements. However it does feel rather late in the day to be issuing
guidance to local authorities to remember older family carers in the third year
(2001/2002) of the Carers Grant. This money has been made available to provide
additional breaks for carers. Surely most local authorities will have set out
their plans for this expenditure before the year began with little flexibility
to change priorities. Unfortunately the guidance issued subsequent to the White
Paper did not mention these groups. If the guidance comes it will be overdue,
as will the payment of Invalid Care Allowance (ICA) to carers over 65 'when
legislation allows'.
2. Support for the Future
Making older family carers a priority is very much about trying to give these
families confidence in the future. This requires making available acceptable
options when the time is right for a change. This is acknowledged in the White
Paper by earmarking some of the £50 million pound implementation to give the
people with learning disabilities in these families options other than going
into residential care. This may mean that some people may have the chance to
continue to live in the family home. However this money won't pay for very many
people to do what other people see as their right. Ultimately it will be down
to local authorities to show their commitment to this by targetting resources
in this area.
Without extra money and with an estimate of only two thirds of the residential
places needed outside the family home local authorities will have to take resources
away from other areas if they are seriously going to make alternatives to continued
parental care a reality. This will be hard, as it will adversely affect other
families. Obviously these families are not going to willingly give up the supports
on which they are dependent. They are likely to be articulate in their defence
of these - more articulate than older family carers, which is part of the reason
why older family carers are often so poorly served now.
One temptation for over stretched commissioning managers will be to attempt
to abdicate their responsibility for the people supported by older family carers.
This is done now by excluding some older people with learning disabilities from
day opportunities by telling them they have retired. This can place an additional
strain on their families at a time when they a less able to cope with it. Another
way of saving money is by using residential provision for older people instead
of those designed for people with learning disabilities. Research by the Foundation
for People with Learning Disabilities recently found that about one third of
people with learning disabilities in residential services for older people came
from the family home. Their average age was 63, which is below the minimum of
65 which registration units should be operating. The White Paper and the National
Service Framework for Older People suggest that people with learning disabilities
under 75 are 'misplaced' in these services which is over 80% of the people with
learning disabilities in them.
If services are to support older family carers to make plans for the future
they need to listen to the plans families make and the ones they would like
to make. Services tend to focus singly on where the person will live next. However this is only one part of planning and is potentially the least important
aspect. Christine Bigby undertook research in Australia which looked retrospectively
at the plans older family carers made (Bigby, 2001). She found that although
where the person was to live was often considered, these plans often quickly
became undone for a variety of reasons. In practice the person often experienced
a number of moves and to places unimaginable to their parents. This was because
family circumstances, organisations and social policy changed. What was more
important for the long-term welfare of the person was financial planning and
the identification of someone, usually a sibling, who would take over the parents'
role of overseeing their welfare - whether or not they were actually living
with them. This challenges services to again move from counting beds to focusing
on people's lives. It asks the question about how to support the people who
take over from parents. The evidence suggests that services make poor
long-term guardians of the welfare of people with learning disabilities. It
would be good to see support for siblings, before they take that role, in a
way that is empowering rather than leaving them as unsupported as their parents
may have been. We know how little information older family carers have about
services; this is will be no different for other family members. For example,
Peggy Fray (who cared for her sister with Down's syndrome and dementia for many
years) did not learn until after her sister's death that there were nurses who
specialised in working with people with learning disabilities.
Conclusion
Central to supporting people with learning disabilities living with older family
carers now and in the future is to respect the role families play in the lives
of people with learning disabilities. This is particularly important when the
person is no longer living with their family. There is no evidence that families
want to give up caring when this time is reached but arrogantly services very
often see that they have no responsibility to the wider family, and regard them
as obstacles to the welfare of people with learning disabilities. Until there
is proper recognition of: the irreplaceable value of families by services; the
expertise they have supporting their relative; and their desire to keep on caring
beyond living together, many families will wish to carry on until it is physically
impossible. Expecting older parents to hand over their relative to a service
which disregards them is expecting them to abandon their son or daughter after
a lifetime of refusing to do just that.
References
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Bigby, C. (2000). Moving On… Without Parents. Baltimore: Paul H Brookes
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Department of Health (2001b). Family Matters… Counting Families In.
London: Department of Health.
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Robinson C. & Williams, V (2000). In their own right one year on. Bristol
Norah Fry Centre.
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Walker, C. Walker, A. (1998). Uncertain Futures – People with Learning
Disabilities and their ageing Family Carers. Brighton: Pavilion.
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