APPENDIX 11: NOTE OF THE COMMITTEE
VISIT TO MEET ADULTS WITH LEARNING DISABILITIES-28 NOVEMBER 2013
Note by the Clerk and Policy Analyst
Overview of the Visit
A delegation of the Committee met with a group of
adults with learning disabilities convened by Mencap Hammersmith
and Fulham branch on Thursday 28 November 2013. Among the group
were members of Safety Net People First, a self advocacy group
of adults with learning disabilities. Some participants were accompanied
by carers or support workers to assist their communication. The
members of the delegation were Lord Hardie (Chairman), Lord Faulks
and Baroness Barker. They were accompanied by the Policy Analyst
and the Clerk.
The purpose of the visit was to provide members with
the opportunity to speak directly with adults with learning disabilities
about their experiences of decision-making. It was held in the
Council Chamber of Hammersmith and Fulham Town Hall. We are grateful
to Hammersmith and Fulham Council for the use of their facilities.
Prior to the visit, Mencap held a preparatory meeting
to ensure that participants felt able to contribute to the meeting.
During the meeting with Committee members an easy-read presentation
was used to help guide the discussion. The presentation can be
found on our website.[565]
We are grateful to the staff of Mencap Hammersmith and Fulham
branch for their support in arranging and facilitating the meeting.
Following introductions, the participants split into
two groups, each facilitated by a member of staff from Mencap.
Subsequently there was a break during which participants were
able to speak individually with committee members. The visit closed
with a final plenary session and words of thanks. This note summarises
the main points which were raised over the course of the discussions.
Key themes emerging from the discussions
The right to make decisions, and the right to support
to make and implement decisions
Many participants reported a strong desire to make
their decisions and to be supported in making and implementing
them. A mother with learning disabilities shared her experience
of the removal of her first child by her parents and social workers.
Her parents cared for her child and her daughter grew up believing
she was her sister. She was not allowed to hold her due to fears
that she would drop her. She had asked for help holding her, but
it was not sufficient. She felt strongly that she should have
been provided with support to bring up her daughter and that had
such support been available she would have been able to parent
her. She reported that she now has two sons, whom she is bringing
up with the support of her brothers and sisters, and she now has
a relationship with her daughter.
Another participant said he liked to take holidays
and was supported in order to do so. He would be shown pictures
of places until he chose which one he wanted to visit. He would
visit first for a couple of days and if he liked it, he would
book a longer holiday. His carers would support him in doing this.
Another man reported that he liked to take holidays
and had done so successfully on a number of occasions, including
to Egypt and Australia, with the support of one carer whose travel
he paid for. However, he wasn't always happy with the arrangements
for deciding on and planning his trips. He reported that on one
occasion his support workers had decided that his next holiday
should be to New York and that he would need two support workers,
despite the increased costs this would entail, and the fact that
he had previously travelled with just one. He had not wanted to
go to New York. He said that when he was there his support workers
spent the whole time shopping and that he had developed blisters
on his feet from being 'dragged around shops.'
Another participant described having to make 'a very
hard decision' about whether or not to have an invasive treatment.
She was supported in making the decision by her doctors. They
explained in simple language the consequences of not having the
treatment, and they gave her time to consider her decision. She
consulted her mother who said it was up to her. She made her decision
alone.
Not all participants were keen on making their own
decisions. One woman said she did not want to make decisions alone,
she preferred to have support. She said support was available
from her key social worker but sometimes she was obliged to see
other social workers. She would like to have support available
24/7 as she was worried about 'getting it wrong.' Another woman
agreed; she liked to have her partner support her because she
struggled to do things on her own.
The importance of being involved in decision-making
when the person lacks capacity
Many of the participants were unhappy about not being
involved, or not being sufficiently involved in decisions that
affected them. The term 'behind my back' was used by several participants
about decisions that had been made in their lives. Some participants
were familiar with the term 'best interests.' One woman, for example,
said she would like her mother and key social worker present at
any best interests meeting to support her; she was concerned things
would 'go wrong' if she went on her own.
One participant was unhappy following a recent move
to a new property. She had appealed to the Council to move her
again. They had refused. She had not been involved in the decision
to move to the new property and she felt the Council were not
acting in her best interests. She was challenging the decision
with the help of an advocate.
Another participant reported that she wanted to stop
taking her medications. She had been told 'no'. She did not feel
involved in the decision.
Another woman was unhappy that her finances had been
rearranged without her involvement. Her social worker was aware
that she was having difficulty budgeting and had arranged for
her bills to be paid directly by social services, and for her
benefit money to be delivered in small amounts three times a week.
Previously she had spent all her benefit money at once. She now
found that she was able to budget throughout the week. She was
happy with the outcome but she was unhappy not to have been consulted.
One participant had a more positive story. He had
had to move care homes because his home was closing. He did not
have the capacity to make the decision himself. Social workers
took him to a number of possible homes until they found one that
he liked. However, it still took a number of months before he
was happy to move into his new home. In the meantime, he visited
the home and had his photo taken there as part of a process of
becoming more comfortable with the move.
One man wanted help to 'plan his life'. He wanted
a person-centred plan, made with support from others involved
in his care. He wanted to be at the centre of his life. This particular
participant spoke to members of the Committee individually after
the group discussions. He was supported during the meeting by
his mother and a care worker. His communication was through a
Lightwriter SL35 with voice output—a keyboard which allowed
him to type out responses to questions which were then vocalised
electronically. The members were told how his parents supported
him to take an active part in the decisions which affected him.
He was involved in choosing his activities. He had also been able
to vote on three occasions in the London Mayoral elections. His
parents had helped to prepare him for this decision by making
scrapbooks of each of the candidates, outlining their policies
and what they stood for. They had provided the information clearly
and in small bursts. The process had taken three months. Additional
information submitted by his parents can be found on our website.[566]
Respect for choices by adults with learning disabilities
Respect for choices made by adults with learning
disabilities was a recurring theme. One participant felt very
strongly that there was a need for greater respect for the right
of adults with learning disabilities to have relationships. It
was later reported that she was in a relationship with one of
the other participants, but both had felt unable to discuss this
due to the presence of her partner's carer, who disapproved of
the relationship.
One man reported that he had been prevented by social
services from buying gifts for the people that he lived with.
Another man gave the example of trying to book a
holiday with his mother. He had been moved into residential care
as a result of abuse by his mother. After his move his confidence
and his relationship with his mother had improved. He decided
he wanted to take her on holiday with him. Staff at the care home
had supported him in understanding the decision, and he had shown
he understood the cost involved by expressing this as being equivalent
to '10 televisions'. Social services did not accept this and repeatedly
asked the home for information to undertake a capacity assessment,
rather than talking to him directly.
Experiences of discriminatory treatment
Several participants reported discriminatory, threatening
or violent behaviour. One participant described a very difficult
relationship with her parents, with whom she no longer lived.
She reported trying to leave the family home, which felt like
a prison to her, resulting in a beating with a belt. She felt
she was not able to challenge the treatment she received because
it involved her parents; she felt it would have been different
if they had been paid carers.
One woman talked about an example of violence from
a neighbour. When she reported it the police had failed to take
action because they did not believe her account and they had no
other witnesses.
One participant said that she responded to being
sad about being treated badly by writing and singing songs about
her experiences. Another said that he 'takes it out on the drums',
while yet another played the keyboard.
Post script to the visit
Following the visit, the facilitators from Mencap
Hammersmith and Fulham branch provided additional information
from the participants about the support they receive when making
decisions. The things they liked about the support they received
were:
· I
am included to make decisions.
· I
get to choose what I want to do
· My
sister helps me
· I
like having help with my money
· Have
friends involved
Some things could have been done better:
· Talk
to me first about it.
· Make
sure family don't overrule me
· Check
after decisions are made that I still feel the same way.
565 http://www.parliament.uk/documents/Mental-Capacity-Act-2005/NoteoftheCommitteevisittomeetadults
withlearningdisabilities-webversion.pdf.
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566
http://www.parliament.uk/documents/Mental-Capacity-Act-2005/NoteoftheCommitteevisittomeetadults
withlearningdisabilities-webversion.pdf.
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