The white paper Valuing People recognised the needs and
rights of people with learning difficulties, but there is still
great room for improvement when it comes to recognising the needs,
rights and contributions of families.
In the UK, the rights of a disabled person against
discrimination and social injustice are recognised by the law. In
the US, however, families are included and recognised by law as
“disabled by association”, giving them the ability to seek redress
if they receive less favourable treatment from service providers. A
similar policy in the UK would mean that services would be required
to work in positive partnership with families, taking an “inclusion
for all” approach.
Too many care professionals have a tendency to stereotype
families as overprotective, problematic and difficult to work with.
The reality is that families are important to all of us, and for an
individual with learning difficulties it is families who are the
main providers of care, from childhood through to adulthood.
Family carers constantly have to cope with and adjust to
transitions throughout their “caring career”. It is up to service
providers to help and support them through these testing times and,
just as importantly, to respect what they have to offer. Remember
that it has often been families who have been at the forefront of
A recent Home Farm Trust report on the role of the family,
Valuing People, Valuing Families, offers specific examples
of how progress can be made in changing the role of mainstream and
specialist services. It particularly recommends that annual reports
be presented to the government outlining services to families, to
include measuring the work of learning difficulty partnership
boards against specific performance indicators.
There are plenty of good examples of best practice available,
but we still have a long way to go before individual examples of
imaginative and flexible application become the common standard
throughout the country.
Where do we go next? Services need to re-examine their mindset.
Families can be leaders, partners in policy-making and trainers.
They can also be problem solvers and resource finders. Families
need their own quality of life as contributing citizens who are not
denied employment and education. It would be not only better for
everyone, but also much more exciting, if services were to
celebrate and develop what families have to offer.
Phil Madden is service development director at learning
difficulty charity Home Farm Trust,