Dr Jo Thacker

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Choice and Control Consultation

• Dr Jo Thacker
• Clinical Psychologist

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Overview

• What is choice and control?
• Why did we do this work?
• How did we do this work?
• What were the findings?
• From the service users perspective
• From the perspective of the staff in the LD team
• From the carers perspective
• Summary of main findings

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What do we mean by choice and control?

• Any situation or event in a persons life where
  they should have some say in what happens e.g.
• At home
• At work
• In relationships
• Housing
• Medication

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What was the aim of this work?

• Valuing People (2001) said that people with
  learning disabilities should have more choice and
  control over their lives
• The Choice and Control group wanted to find out
  if people with a learning disability in Walsall
  have enough choice and control in their lives

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How did we do this?

• We asked service-users about their life
  experiences (at Links to Work, Brewer St Centre,
  the Ethnic Advocacy project, Apnar Ghar and
  Hawbush college)
• We asked groups of staff in the Learning
  Disabilities Team about their opinions
• We sent out a questionnaire to parents and carers
  to find out their opinions

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What did service-users say?

• Activities
• A small number of more able service-users had
  lots of opportunities such as
• being involved in the Duke of Edinburgh scheme
• attending Partnership Board meetings
• attending advocacy meetings
• having holidays abroad
• talking to the media
• going for day trips out

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What did service-users say?

• Regular activities for people were shopping,
  organised discos and going to the day
  centre/Links to Work/college
• Occasionally people went to the cinema, the pub,
  out for meals, swimming or the gym

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What did service-users say?

• People often went on holiday to Butlins or
  Blackpool sometimes the carers chose the
  holiday. A small number of people had been abroad
  (with their parents)
• People sometimes had to do things their carers
  wanted to do

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What did service-users say?

• Day Centres
• People enjoyed going to the centre
• People liked having particular roles and
  responsibilities
• Some service users were upset at the closure of
  the day centres and felt they had had no choice
  about their new day service

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What did service-users say?

• College
• People generally said they had a choice about
  what courses they wanted to do
• Some people wanted a bigger choice of courses
• People enjoyed seeing their friends at college

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What did service-users say?

• Employment
• Some people chose not to work
• Some people didnt know that they would be able
  to work
• They did not know what jobs were available to
  them
• Some people went to work when they didnt want to

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What did service-users say?

• Some people felt valued in their jobs
• Some people wanted a bigger choice of jobs
• One person wanted to be able to work flexi-time
• Some people wanted more advice about finding a job

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What did service-users say?

• Support
• Most of the service-users were glad that their
  carers helped them with their meals, their
  shopping and taking them out
• Some liked their support workers
• One person said he had choice about some things
  but all the big decisions were made by people
  who think they know best

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What did service-users say?

• None of the service-users chose their support
  worker
• Some said their support workers were too busy to
  talk to them
• Some disliked their support worker because they
  didnt listen or they told them what to do
• People didnt like it when the support workers
  changed

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What did service-users say?

• Home
• People living with their parents did not appear
  to have as much choice over their meals, clothes
  and holidays but they were happy with this
• People in supported living had the most choice
  and control over food, activities, spending their
  money etc.

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What did service-users say?

• People in group homes had less choice.
• Some service-users didnt like the people they
  lived with because they broke things or kept
  going into their room
• Many did not have much choice (if any) about
  where they lived. Some only saw one property

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What did service-users say?

• Relationships
• Some people reported having lots of friends,
  mainly at the day services they attended
• Other people were lonely and did not know how to
  meet new friends

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What did service-users say?

• Some had boyfriends or girlfriends. Only the most
  able could see their partner outside of the day
  centre.
• The majority couldnt see their partner because
  of a lack of support or transport issues
• Many people wanted a boyfriend/girlfriend but
  said they wouldnt know how

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What did service-users say?

• A number of people wanted to get married and have
  children. Some had been told they cant because
  they are disabled.
• Some wanted a sexual relationship but couldnt
  because they couldnt visit their partner or they
  werent allowed.
• Some were too embarrassed to ask about sex and
  contraception

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What did service-users say?

• General
• No choice about where to go for respite
• Few went to a place of worship one had to go to
  her carers choice of church
• One person wanted to drive
• Some wanted to purchase mobile phones but didnt
  know how
• One person just wanted to be able to make her own
  hot drink but couldnt because of the way her
  kitchen was arranged

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What did service-users say?

• A number of people were bullied by others and
  wanted to put a stop to it
• People often said yes to things they did not
  want, because they didnt want to upset people by
  saying no

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Apparent differences with people from an ethnic
minority

• Service-users from minority backgrounds seemed to
  have a wider range of opportunities and more
  family involvement
• Some had been married and those that werent were
  planning to get married. Some wanted children
• One had worked in a mainstream place of
  employment and others wanted to own their own
  business or be a teacher

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Apparent differences with people from an ethnic
minority

• Most lived with their parents or extended family
  and were happy with this
• Most had travelled abroad to India, Pakistan and
  other places
• Most were supported to attend the temple/mosque,
  although some chose not to attend
• One person wanted to be able to go out more and
  needed more support to do this

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My observations from talking to service-users

• Some people did not know they had a choice about
  things because their carers or professionals
  usually made their decisions for them
• People were often surprised when I suggested that
  they did have a choice about things (such as
  having a relationship or a job)
• People generally said things were fine. I had
  to encourage people to talk about things they
  were not happy with

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What did staff from the LD team say?

• Staff came up with a long list of things they
  themselves would like choice and control over but
  felt that service-users didnt always get (e.g.
  Employment, relationships, money etc.)
• Staff stated the importance of apparently simple
  choices such as what to have for tea, whether to
  have a pet, what to buy for their home etc.

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What did staff from the LD team say?

• Staff thought there were things that stopped
  service-users having enough choice and control
  such as
• Communication
• Limited finances
• Not enough home/work/day placements
• Not having an advocate
• Being dependent on carers choices
• Not enough external support agencies

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What did staff from the LD team say?

• Staff felt frustrated that choices were sometimes
  offered to people (i.e. where to live) but these
  could not be delivered because of finances (and
  sometimes other peoples opinions)

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What did staff from the LD team say?

• Relationships
• Staff reported that service-users often dont
  have the opportunity to maintain relationships
  outside the day services or organised discos
• Relationships are often lost due to changes in
  placement, staff or accommodation
• Staff wanted to see more support for people to
  initiate and maintain relationships

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What did staff from the LD team say?

• Transition
• Choice is discussed a lot between 16-20 years of
  age but actual choices seem to diminish over time
  due to service and financial restrictions
• Staff thought that carers, parents and
  professionals sometimes attempt to make choices
  for the service-user, believing they know best
• Staff expected that service-users wanted
  independence and freedom and required the support
  to make the choices this entailed

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What did staff from the LD team say?

• General issues
• Staff thought that service-users may benefit from
  having a named worker throughout their lives
• Staff highlighted that service-users often have
  little choice about transport (usually minibuses)

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What did carers think?

• Carers reported a range of choices their relative
  made on a day to day basis such as
• food
• clothing
• appearance
• what they watch on TV
• what to do for leisure activities
• whether or not to go to work or college

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What did carers think?

• Some carers thought their relative could NOT make
  choices about some things including
• Money
• Long term decisions about what is best
• Medication
• Their health
• What to wear
• College courses
• Going out
• Anything people just have to take what is on
  offer

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What did carers think?

• Some carers thought their relative was unable to
  make choices because of
• Their learning disability
• Autism (too much choice causing distress)
• Their lack of knowledge
• Physical disabilities
• Communication difficulties

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What did carers think?

• Carers gave their thoughts about what would help
  their relative make choices
• Psychological support
• Practical support and supervision
• Support for specific difficulties (e.g. cooking,
  using buses, money)
• Simple explanations of the choices
• Support network
• Less financial cutbacks
• Services offered based on relatives need

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What did carers think?

• Specific difficulties associated with choice and
  control have been
• No choice about where their relative went to
  school spent years in the wrong type of school
• Relative chose to drop hours at LTW but did
  this because of bullying and situation got worse
• Being given facilities (e.g. a computer) then
  moving house and not having the choice to use one
  at the new placement

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Summary of main issues arising

• Relationships people need support to develop
  these
• Financial constraints sometimes not enough
  money to offer real choices
• Inadequate services to provide what people choose
• More able people have more choice and control
  those requiring more support often have others
  making choices for them

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• For more detailed feedback about the consultation
  exercises please feel free to contact me on 01922
  858450.

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So what now?