Keep Thinking
Families!!!
Cally Ward
Focus of the day
Children and adult services will construct
long term and collaborative plans across
education, social and health services and
jointly develop and commission support
and services to meet the needs of children
and adults with learning disabilities, their
families and carers.
Falling through the net
My focus is on extending this
vision to include families in the
partnership and collaborative
process
‘why have family carers got to be
involved; this is a national
strategy for people with
learning disabilities’.
Absent from the generic Carers
Strategy
Mental Health strategy does not
include people with learning
disabilities
What I am going to talk about:
• Why families are important
• The long term nature of the
caring relationship across
the life course – support at
different ages and stages
• Understand the experience
of families & the importance
of hearing what they have to
say
• Understand the need to work
collaboratively with families
Emerson & Hatton (2008)
Accommodation
arrangements
Mild or moderate
severe
profound
All people
With parents
48%
61%
60%
55%
With other
relatives
14%
11%
4%
12%
With partner
6%
1%
1%
3%
Alone
7%
2%
0%
4%
Sub-total
74%
74%
65%
74%
Supporting
people funded
12%
8%
5%
10%
Residential care
13%
15%
19%
15%
NHS
accommodation
1%
2%
11%
2%
Total
100%
100%
100%
100%
Private
households
Understanding the nature of the caring relationship
caring for – caring about!
• Family needs are diverse and complex
• Caring within a family context is also complex
and has been variously conceptualised along a
stress versus altruism axis or more recently
refocusing on reciprocity and in many older
families – mutual caring.
• Lifelong nature and usually continuous changing
as families move through the life cycle
• Limited but much needed research on caring
relationship when people leave home
A lifelong commitment – facing
transitions in the caring relationship
• Being told
• When your child reaches
school age & making
choices about
educational opportunities
• Adolescence and moving
into adulthood
• When your son or
daughter leaves home
• Growing older together
Families are important
“Families are usually the main source of love, care
and support for children and adults with learning
disabilities. This is especially the case for people
with complex needs. Even when people leave
home, they do not leave the family. Families
continue to offer a lifetime of involvement,
support and advocacy.”
“Valuing People Now recognises the important role
that carers play and the importance of working
with them….. .”
Valuing People Now
Disadvantage & discrimination
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There are so many positive aspects of caring but research has highlighted
the way families can be disadvantaged:
High levels of stress in all communities
Finances
Health
Isolation
Housing
Martial breakdown
Situation for some BME communities qualitatively worse on a number of keys
indicators:
• High level of unmet needs
• Poverty
• Poor housing
• Social isolation and lack of support
• Lack of information
What families say is important to
them
Family carers do not constitute a homogenous group and there are
generational, class and cultural differences. However, some general
issues can be identified.
In research conducted by Grant and Whittel families identified the
following as the things they valued and found helpful from services:
•A proactive approach
•Flexibility
•Consistency
•Accessibility
•Availability
•Reliability
If you are not searching for it, it probably wont find you!! Mum – Umbrella
Group - Derby
What families say is important to them
• Honesty
• Respect for their opinions & perspectives
• Respect for their expertise & experience
However:
Research in Bristol found that stress is caused more often by trying
to deal with services than by the particular characteristics of
the person with a learning disability.
This is often reflected in the language that families use in relation to
their contact with services –metaphors of war – battle – conflict
rather than collaboration and partnership.
Families don’t see themselves as carers. They
see themselves as family members looking
after their own!
Getting the best for their
family member
Having their role
recognised and valued &
seen as key partners
Having their own needs
meet as ‘carers’.
Families contacting the CBF
3 big issues
1. Current service provision not meeting needs &
lack of local service development to provide an
individualised service which is capable of
meeting needs
2. Lack of information, training & practical support
3. Restrictive practices (inappropriate use of
seclusion, physical restraint & antipsychotic
medication)
Current service provision not meeting needs & lack
of local service development to provide an
individualised service which is capable of meeting
needs
Adult: “My 38 year old sister has lived in several
‘specialist’ placements during her life to date, all out of
area and a long way from her family. She recently
moved again. Despite our whole family begging that
somewhere be found near to her family we were told
that there just wasn’t anywhere locally that could cope
with her. I don’t think being miles away from those
who love you is in anyone’s best interests and I’m sure
if my sister could talk she would say the same.”
Current service provision not meeting needs & lack
of local service development to provide an
individualised service which is capable of meeting
needs
Child: “When my 14 year old son goes to respite my husband and I daren’t
venture too far, or let our hair down too much as you can guarantee we will
get a phone call from the staff asking us to come and sort our son
out. When we get there (which can be anytime day or night) our son is
generally in the bedroom with the staff guarding the door outside, he is in a
terrible state, extremely distressed and often having soiled and wet himself
and been left for some time. It is horrendous for our son and extremely
upsetting for us, but we have no choice, this is the only respite on offer
where they will take people ‘as bad’ as my son, even though they are
obviously not trained to work with people whose behaviour challenges.”
Lack of information, training & practical support
Adult: “I rang the emergency duty social worker late one evening after
my severely autistic son smashed a window in our home during an
episode when he was extremely anxious and agitated. My wife and
I are in our 60’s and were quite afraid and didn’t know what else to
do. The social worker told us to call the police! We didn’t bother we knew that there would be nothing they could do to help. Once
again we were left to deal with it ourselves.”
Child: “Apparently, they don’t do carers assessment in this area”
Restrictive practices (inappropriate use of seclusion,
physical restraint & antipsychotic medication)
Child: “I am really
concerned about my son,
currently at school he is
strapped into a wheelchair
nearly all day to “manage”
his challenging behaviour.
He does not need to use a
wheelchair and I think there
must be better ways to help
him”
Family involvement & collaboration
• Planning for the
individual person
• Operationally – quality
audits & training
• Strategically –
governance –
commissioning and
policy development
Ten top tips for working with
parents - CBF
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Share parents’ hopes and aspirations for their child
Get off to a good start by making and maintaining early contact
Be clear, accurate, open and truthful
Keep language clear and simple so it cannot be misinterpreted –
avoid jargon
Take parents concerns seriously
Be an active and empathetic listener
Stay approachable and be contactable even if you disagree
Personalise written communication and never use generic
statements about a child
Use your creativity to seek out the child’s views when appropriate
Signpost parents to sources of independent advice and support
Real lives…
“Valuing People is a nice document – but we
have shelves full of those that say the right
things. The challenge is translating it into
practice - delivering it – so it makes a
difference to my son’s life. Day in, day out.
That’s the test – and I worry about all
these changes, the cuts and the future.”
Cuts in local services!!!!