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The First National Survey of the Life Experiences of Adults with Learning Difficulties in England
Eric Emerson, Ian Davies & Karen Spencer
And …..
Sally Malam from BMRB
A large advisory group
Department of Health
The Plan
What we did Working in partnership The main results Some conclusions and implications
Aims: Through Partnership
To describe what life is like for adults with learning difficulties in England
Why?So in the future we can find out whether life is
getting better To inform current policy
Who Took Part?
Just under 3,000 adults (16+) with learning difficulties (including people who may not be known to LD services) Living in private householdsLiving in supported accommodation
People we did not reachHomeless PrisonsTreatment facilities
Department of Health
National CareStandards
Commission
SupportingPeople
Database
Omnibusrecruitment
SocialServices
NHS places &
beds
ResidentialCare
SupportedHousing
PrivateHousehold
The Interviews
Face-to-face computer assisted structured interviews
In own home All interviewers trained by Ian and Karen Support person present if requested Encourage participation through
accessible wording, rephrasing, visual aids
The Interviews
+ partner2%
+ other relative
9%
+ friend1%
+ advocate1%
+ paid carer23%
just the focus person 24%
+ parent40%
Areas Covered in Interview
Accommodation Work Education & training Money/poverty Relationships
Contact with families & friends
Caring for others
Being part of the community Neighbourhoods Participation Transport Citizenship Crime & bullying
Health & well-being Support
Choice & Control
Do you need help to ...?
Get dressed Put on shoes
Order food at a cafeSHOWCARD 8a
Have a shower or bath
This year, have you been ...?
SHOWCARD 56
For a cervical smear test
To have your breasts checked
for lumps
Working in Partnershi
p
This national survey is very important to people with learning difficulties.
No one had been interested in us at a national level before. We want other people to know that we are here and can be part of society.
As an organisation run and controlled by people with learning difficulties:
• It is important that we are involved in the beginning, middle and end of projects – ‘nothing about us without us’. We know what it is like to have learning difficulties.
• It was important to help find the right questions and make sure that the survey was done in a way that was accessible to people with learning difficulties.
• We worked in partnership with Sally Malam at BMRB and Eric Emerson at Lancaster University
• They allowed us to get on with our work using our own experience and expertise.
• This does not always happen on projects because other people do not always believe that we have this experience and expertise.
We were involved all the way through
• In making the bid for project funding
• In planning the project
• In planning the questions
• In training interviewers
• In putting an accessible report together
• In giving our thoughts on what the results meant to people with learning difficulties.
We made sure that the right questions where asked in the survey:
• By holding a Conference in August 2002
• By working with our partners on what questions should be asked
• By being part of the discussions at the advisory group
The Conference:
• Was attended by 35 people from the Central England area.
• They joined in workshops to talk about what was important to them.
• BMRB came to listen and learn.
In training the interviewers we did sessions on:
• Speaking up
• Living with learning difficulties
• Understanding what people with learning difficulties want – the same as any one else
• In all the sessions we involved the interviewers
• We wanted them to understand people with learning difficulties
• Respecting people was important
We helped interviewers to understand that
• They need to allow more time for people to answer questions
• That they needed to make sure that they were understood
• Often other people will speak up for people with learning difficulties when there is no need
And to understand that people with learning difficulties:
• Often have not been given chances to gain much confidence
• Need to trust people before they can talk openly
• And much more …
Experienced professional interviewers learnt from us why they would need to change the way they worked for this survey.
For the report we worked with our partners to decide what the chapters should be about
We said what we thought the results meant for people with learning difficulties, in each chapter
The survey tells us how much more there is to do before people with learning difficulties have a better
life.
Here are some of the main points
from the survey.
People with learning difficulties do not get to do many of the things
that they want to in their community.
People with learning difficulties who do not
live in a residential home, are more likely to live in poor areas.
Not many people with learning difficulties have a paid job.
People with learning difficulties are much more likely not to see members of their families than
people without learning difficulties.
People with learning difficulties are much more
likely not to see friends than people without learning
difficulties.
People with learning difficulties are much less
likely to have children and look after their own children.
People with learning difficulties are less likely
to vote in general elections.
People with learning difficulties are less likely to have money to buy clothes and other things that people without learning difficulties can buy.
A lot of people with learning difficulties have no choice about who they live with or where they
live. Also they do not have enough privacy.
Some people with learning difficulties have no control over
their own money.
x x
So What Does it All Mean?
Social exclusion Choice & control Independence Systemic
inequalities
Social Exclusion
Segregated education (82% went to special school or unit)
Low rates of employment Few inclusive relationships Significant minority were socially isolated
Exclusion: Contact with Families
0%
10%
20%
30%
40%
50%
60%
70%
Every Day Every Week At Least Oncea Year
Never
Our SurveyPSE Survey
Exclusion: Contact with Friends
0%
10%
20%
30%
40%
50%
60%
70%
80%
Every Day Every Week At Least Oncea Year
Never
Our SurveyPSE Survey
Systemic Inequalities: Poverty & Neighbourhood Deprivation
Living in unsuitable accommodation Having less privacy at home Unemployment Not having a voluntary job Not having enjoyed school Being bullied at school Not taking a course Not attending a day centre Not having control over money Less likely to see members of their
family Being an unpaid carer Seeing friends less often Doing a smaller range of
community activities Not having voted
Not knowing about local advocacy groups
Feeling unsafe Being bullied Being a victim of crime Having poor health Having a long-standing illness or
disability Smoking Not being happy Being sad or worried Feeling left out Feeling helpless Not feeling confident Having unmet needs Having wanted to complain about
the support they receive
Systemic Inequalities: Support Needs People with higher support needs
were more likely to be living in supported
accommodation to have less privacy to have less choice to be unemployed to feel helpless not to have a voluntary job not to have gone to a mainstream
school not to be taking a course not to receive Direct Payments not to have control over their money not to see friends who do not have
learning disabilities not to feel safe not to feel confident.
People with lower support needs were more likely to be poor be a victim of crime be unhappy have poor general health to have been bullied at school
Value Baseline against which to measure
progress Highlights some key issues & links to
broader policy agenda InequalitiesSocial exclusionPoverty
Benchmark for judging service quality
