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The majority of men and women with
learning disabilities in this country are supported in the community
by their families. Even when people with learning disabilities
leave home it does not mean they stop being a valued member
of their family network.
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Families are the only people who will
have a continuous relationship with the person with a learning
disability from childhood to adulthood. Families, therefore,
have an important and unique contribution to make to discussions
about services for the family member they support, as well as
contributing to broader discussions about local learning disability
services. This contribution needs to be acknowledged, valued,
listened to, and acted upon.
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Families often describe their relationship
with services using the language of war. Families describe themselves
as war weary - Fed up with battling - having to fight for every
little thing. The research, 'In Their Own Right', by the Norah
Fry Centre, found that many family carers said they found their
relationships with services more stressful than any other aspect
of caring for their learning disabled son or daughter.
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Family carers of people with learning
disabilities have not always been well served by mainstream
Carer's initiatives. Research has shown they are not always
accessing their right to a Carers Assessment, and when they
do it does not necessarily lead to getting the support they
need.
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The report, Family Matters: Counting
Families In, was published alongside the white paper Valuing
People and catalogues many of the concerns expressed by
family carers of adults with a learning disability. Rob Greig,
one of the architects of the White Paper, has talked about Valuing
People as representing an attempt to create a 'new deal
for families'.
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So, it comes as no surprise that ensuring
families get the right sort of support is given high priority
in the White Paper. Objective
number four is to "increase the help and support carers receive
from all local agencies in order to fulfil their family and
caring roles effectively".
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The drive to improve work with family
carers is reflected in the new standards
for inspecting learning disability services
published by the Social Services Inspectorate. At a strategic
level services are being asked to demonstrate how "the role
of carers is recognised by social services strategy and supported
by appropriate investment."
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Valuing People seeks to promote
a change in service culture that recognises that the relationship
between family and professional is a crucial aspect of service
effectiveness in delivering better services to men and women
with learning disabilities. Developing partnerships with families
is not an optional extra but a vital prerequisite in implementing
the Valuing People change agenda at a local level.
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Partnership Boards should not underestimate
the challenge of building better relationships with families.
The crucial question to ask is:
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How do we create
partnerships between families and services when relationships
in the past have at times been more adversarial than collaborative?
