| Family matters - why it is important to
improve relationships with families? |
-
People with learning disabilities overwhelmingly
value the support they get and the relationships they have with
their families.
-
Families have not always been recognised
for the enormous contribution they make in relation to the care
and support of people with learning disabilities. The
majority of people with learning disabilities have always been
supported in the community by their families. Research
by Mencap suggests that the proportion of people with learning
disabilities living at home with their families has not changed
since 1969.
-
For the majority
of people with learning disabilities, community care is actually
family care. It is estimated that over 60% of adults
live with their families. We live in an ageing society and it
is estimated that a third of all family carers are over 70.
Many of them are caring alone.
-
Since 1971 the only public policy that specifically
focuses on people with learning disabilities (the last White
Paper - Better services for the Mentally Handicapped) was dominated
by the move to close down the old 'mental handicap' hospitals.
The process of de-institutionalisation has been a very important
one but it has skewed the way the public perceives how the majority
of people with learning disabilities are supported.
-
Not known to services.
Research here in the UK, in the US and Australia show that in
any local area as many as 25% of people with learning disabilities
are not known or in contact with learning disability services
until their family carers become too frail, or ill to cope any
longer.
-
Families are the
only people with a continuous and life long commitment to the
person with the learning disability. Families are not
paid to care. Some families have been caring in their home for
50 and 60 years. Paid staff might come and go but your family
does not. Though relationships between family members will not
remain the same as they move through life cycle, as we will
discuss later.
-
Parenting a child is very different from
being the parent of an adult. As parents grow older then their
adult children take on new roles in relation to them. This is
true of people with learning disabilities.
Some people with learning
difficulties become their carer's carer in later life. The majority
of families are highly mutually interdependent. They come to
depend on one another.
-
Even when someone leaves home it does not
mean they leave the family. You can care for someone
but you also care about them. The
caring relationship does not
stop when a person moves into service provision. Some
services find this difficult to understand and feel some families
are 'over involved' and 'over proactive'. Rather than recognising
that if someone has been caring for several decades they will
continue to want to do so.
-
Continued family involvement has been shown
to provide vital protection against abuse for people living
in services. ('Moving On Without
Parents', Bigby C. 2000.)
-
Families have a long
and distinguished history of campaigning for better services
and equality for people with learning disabilities.
Many older carers were bringing up their
children at a time when there were barely any community based
services and the stigma attached to having a 'handicapped' child
was great. It is these parents who have helped shape the services
we have today. Mencap was formed in 1946 because parents felt
so angry that their disabled children were excluded from the
right to go to school.
-
Individual families have always advocated
vigorously for the rights of their individual family
member to receive quality services. How often have you heard
staff talk about 'pushy' or over protective parents, but also
comment that 'those who shout the loudest get the best service'.
Perhaps it is true that for many people with learning disabilities,
having a caring family is the greatest resource if you want
to get a good service.
-
As Professor Carol Walker has argued in
the report 'Uncertain Futures' (Walker
C. & Walker A. 1998): Families
play a critical role in supporting people with learning disabilities
to try new things and develop new skills. If services
want to work with the person with learning disables and open
up opportunities for them, then they have to engage the family.
If they don't, opportunities might be missed just because the
family has not been involved.
|
And yet - despite all these positive things about family
carers the Family Matters
consultation for the DoH found families: |
- Feel devalued and marginalised by professionals:
|
|
"They never listen to us. They always judge us. No
one ever bothers to ask us about what we think!"
|
|
- Describe their relationships with services
using the language and metaphors of war:
|
|
"We are war weary. We are always battling. It's like
knocking your head against a brick wall. Stress is dealing
with the services not to do with our disabled son!"
|
|
- Feel frustrated and angry.
|
|
"They never listen to us. They make everything so
difficult. I'm going to sue them"
|
|
- Feel they lack information and support
|
|
"If you are not looking, it certainly won't come
and find you. No one tells you about any thing you are entitled
to. I've always found out from other parent s. All I wanted
was a couple of hour's break to go shopping on my own, but
this seemed too much to ask!"
|
|
- Respond to service changes with great anxiety
|
|
"They say they want to modernise day services, whatever
that means I reckon it's a way of cutting costs myself. I
know we'll end up having him at home more, and he'll get bored!
It's not fair - he loves his day centre, and we like a bit
of a break."
|
|
Older carers
Many of the experiences of older family carers are similar
to younger parents, but there are important differences, as we will
discuss more fully in the next section. As the Walkers have argued,
'Although older carers share many characteristics with their younger
counterparts, there are also important differences, which have an
impact on their need for services and support.' |
 |
|
These include:
-
They are continuing to care and growing
older at the same time
-
They are more likely to be caring alone
-
They are more likely to have a reduced
networks as spouse, and friends die
-
The relationship with their son or daughter
is very important and this can develop into mutual dependency
and very strong bonds
-
They have had a different experience of
services than younger carers
-
They are less likely to ask for help just
at the time they might need more
-
Their sons and daughters are less likely
to be receiving a service at all
|
