1. The First National Survey of the Life Experiences of Adults with Learning Difficulties in England Eric Emerson, Ian Davies & Karen Spencer

2. And ….. Sally Malam from BMRB A large advisory group Department of Health

3. The Plan What we did Working in partnership The main results Some conclusions and implications

4. 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

5. 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 households  Living in supported accommodation People we did not reach  Homeless  Prisons  Treatment facilities

6. Department of Health National Care Standards Commission Supporting People Database Omnibus recruitment Social Services NHS places & beds Residential Care Supported Housing Private Household

7. 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

8. The Interviews

9. 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

11. Do you need help to...? Get dressedPut on shoes Order food at a cafe SHOWCARD 8a Have a shower or bath

12. This year, have you been...? SHOWCARD 56 For a cervical smear test To have your breasts checked for lumps

13. Working in Partnership

14. 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.

15. 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.

16. 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.

17. 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.

18. 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

19. 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.

20. 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

21. In all the sessions we involved the interviewers We wanted them to understand people with learning difficulties Respecting people was important

22. 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

23. 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 …

24. Experienced professional interviewers learnt from us why they would need to change the way they worked for this survey.

25. 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

26. The survey tells us how much more there is to do before people with learning difficulties have a better life.

27. Here are some of the main points from the survey.

28. People with learning difficulties do not get to do many of the things that they want to in their community.

29. People with learning difficulties who do not live in a residential home, are more likely to live in poor areas.

30. Not many people with learning difficulties have a paid job.

31. People with learning difficulties are much more likely not to see members of their families than people without learning difficulties.

32. People with learning difficulties are much more likely not to see friends than people without learning difficulties.

33. People with learning difficulties are much less likely to have children and look after their own children.

34. People with learning difficulties are less likely to vote in general elections.

35. People with learning difficulties are less likely to have money to buy clothes and other things that people without learning difficulties can buy.

36. 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.

37. Some people with learning difficulties have no control over their own money. x x

38. So What Does it All Mean? Social exclusion Choice & control Independence Systemic inequalities

39. Social Exclusion Segregated education (82% went to special school or unit) Low rates of employment Few inclusive relationships Significant minority were socially isolated

40. Exclusion: Contact with Families

41. Exclusion: Contact with Friends

42. 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

43. 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

44. Value Baseline against which to measure progress Highlights some key issues & links to broader policy agenda  Inequalities  Social exclusion  Poverty Benchmark for judging service quality

45. http://www.ic.nhs.uk/pubs/learndiff2004