Sunday, 27 January 2008

Concepts of Access: Acknowledgements

Economic and Social Research Council logo
Funders and Organisers

The Concepts of Access Seminar Series was funded by the Economics and Social Research Council and organised by Melanie Nind and Jane Seale from the School of Education at University of Southampton.

Seminar Participants

1. Ginette Aird, Bracknell CTPLD
2. Richard Aird, Barrs Court School
3. Chris Abbott, Kings College, London
4. Ann Aspinall, Home Farm Trust
5. Dorothy Atkinson, Open University
6. Janet Badger, British Institute of Learning Disabilities
7. Allan Bennison, Nature Corridors for All
8. Alec Bennison, Nature Corridors for All
9. Phil Bayliss, University of Exeter
10. Bernadette Beresford, Connect Advocacy, Gosport & Fareham
11. Phyllis Black, Skill, National Bureau for Students with Disabilities
12. Bryan Blackwell, Nature Corridors for All
13. Drew Bradley, Choices Advocacy, Southampton
14. Dora Bjarnnason, Iceland University of Education
15. Gary Butler, Saint George’s Hospital Medical School
16. Jean Cash, Nature Corridors for All
17. Robert Cash, Nature Corridors for All
18. Tsitsi Chataiki, University of Sheffield
19. Henry Cirino, Community Access Team, Southampton
20. Veronica Clancy, University of Exeter
21. Judith Clayton, Choices Advocacy, Southampton
22. Mabel Cooper
23. Mark Devlin, Bracknell CTPLD
24. E.A Draffan, Nature Corridors for All
25. Jackie Dundee, Connect Advocacy, Gosport & Fareham
26. Leslie Dunwoody, Carlisle People First
27. Pat Finnegan
28. Kerrie Ford, Norah Fry Research Centre
29. Claire Franklin
30. Kate Gascoyne, Home Farm Trust
31. Dan Goodley, University of Sheffield
32. Darren Grant, Choices Advocacy, Southampton
33. Caroline Gray, ACE Centre, Oxford
34. Darren Gunn, Valuing People
35. Carol Harding, Nature Corridors for All
36. Jeremy Hatcher, Connect Advocacy, Gosport & Fareham
37. M. Henry, Nature Corridors for All
38. Caroline Hossack
39. Andrew Jarvis, Romsey & Waterside Day Services
40. Louisa Jones
41. Hazel Lawson, University of Plymouth
42. Hilary Linssen,
43. S. Margeison, support worker
44. Roy McConkey, University of Ulster
45. Duncan Mitchell, Manchester Metropolitan University
46. Dee Molina, City Limits Employment, Southampton
47. Melanine Nind, University of Southampton
48. Chris Nuttall, Bracknell CTPLD
49. Robin Parker, Choices Advocacy, Southampton
50. John Parry, Nature Corridors for All
51. Rebecca Pockney, University of Southampton
52. Paul Rickson, Valuing People
53. Jonty Rix, Open University
54. Clare Royall, Choices Advocacy, Southampton
55. Phillippa Rudge
56. Mark Sabine, Bracknell CTPLD
57. Judith Samuel, Oxfordshire Learning Disability NHS Trust
58. Jane Seale, University of Southampton
59. Kieron Sheehy, Open University
60. Ben Simons, University of Exeter
61.Katy Simmons, Open University
62. Mathew Smith, British Institute of Learning Disabilities
63. Keith Smith, British Institute of Learning Disabilities
64. Mark Stephens, British Institute of Learning Disabilities
65. Wayne Taylor, Choices Advocacy, Southampton
66. Amy Tyler, Bracknell CTPLD
67. Ruth Townsley
68. Lou Townson, Carlisle People First
69. Mary Waight, Bracknell CTPLD
70. Jan Walmsley, The Health Foundation
71. Val Williams, Nora Fry Research Centre
72. Sara Wornham

Web links from projects and people involved in the seminar series

Nature Corridors for All:

Skills for Support:

TATE Project (Through Technology to Employment):

We got some of our pictures for this report from:

Concepts of Access: Conclusions

Image of people thinking

  • There is plenty to celebrate as well as things to be angry about in terms of the level and quality of access that people with learning disabilities experience.

  • People with learning disabilities want the same opportunities for access as everyone else.

  • We need to be critics of access issues – so that we keep on trying to improve.

  • We all have a responsibility to try and change things.

  • There it no single solution to access issues.

  • Access is as much about the relationships that we develop with people, as the goals or outcomes.

We can all make a difference if we:

  • Raise the expectations of professionals, parents and people with learning disabilities themselves, by raising awareness of good “access practices”.

  • Talk properly with people with disabilities-as happened at the seminars- in ways that are free of jargon, unhurried and respectful.

  • All work together so that the views and opinions of people with learning disabilities are heard in places where it matters (for example self-advocacy conferences and Partnership Boards).

How do we improve access in the future?

Group of people asking questions

Building Bridges and Bonds

  • We need to help people with learning disabilities build their social networks and personal contacts.

  • Co-operation is needed, where we all work together to get the things that we have decided together are important to us.

Getting the balance right

  • We need to get the balance right between control (safety) and risk.

A role for interdependence

“People need people, they open doors”. [Rebecca Pockney]

  • Autonomy and independence does not mean that you should not need other people or get help from them. It can be very lonely trying to doing everything yourself.

  • We need to find out how we can work as partners with people with learning disabilities, so that we support and learn from one another. For example, in the Nature Corridors for All project participants with learning disabilities were able to work with school children to help them learn about the local nature reserve.

Who should be helping access to happen? Part 3

Gary’s story

The biggest access problem I faced was other people’s doubts about my ability to work in this fast-moving society. But I found out that I am as good as I think that I need to be. Also, other people around me, including my family and friends and my theatre company, said that “ I could do anything that I wanted to, provided that I put my mind to it”.

I initially heard about this job [as a trainer at St George’s Hospital Medical School] when I went to see another learning-disabled theatre company performance called A Billion Seconds at St George’s Hospital Medical School.

I had lots of help in filling in the application forms in from my outreach support worker, who also came with me when I was asked to come in for an interview.

St George’s stressed that this was not a token interview process just because I am learning disabled, but that it was a full and proper recruitment procedure, the same as for all posts at St George’s.

However, they made sure that I knew I could have a supporter with me, as well as any other facilities which I might need. For example, extra time to answer questions if these were too long or complicated.

Who should be helping access to happen? Part 2

Image of someone Speaking Up

Intermediaries and brokers

  • Intermediaries may help with access. For example, access to justice through the law.

  • Brokering is where people such as advocates put people with learning disabilities in touch with other people who can help them gain access to what they want. it is individuals that make a difference, rather than systems.

  • Access can be helped if you can find friends and can build a network of people who are willing to help people with learning disabilities talk to the people they need to talk to in order to gain access.

  • Life history work shows that while some access issues get better and some go on and on, what has always made a difference for families over 80 years is individuals - particularly people they meet who open doors for them.

Natural support

  • Support from friends and colleagues can be more valuable than support from professional workers.

  • Natural support could be people you travel on the train with, people you work with, friends you make at school or people you meet in the pub.

Who should be helping access to happen? Part 1

Different people working together


  • We need to build community recognition of advocacy, so that we can move advocacy outside of the disabled world.

  • Advocates are the best people who can help others with learning disabilities.

Trained support

  • In education the key is access to creative, reflective teachers with a positive, problem-solving attitude. Their own access to specialist knowledge and support is important too.

  • Having a skilled or qualified support staff won’t make things better if they are not taught how to take chances and try new things.

Champions of the cause

  • People with learning disabilities need ‘champions’ working for their rights.

  • It takes a “special effort” for people with learning disabilities to sort out their access issues. It also takes a special effort for professionals to “champion the cause”. Those who do, usually have first hand experience of living or working with people with learning disabilities.

  • We need to support people with learning disabilities to become “champions” themselves if they want to be: speaking up for themselves and others.

How and why is access achieved? Part 2

Someone nodding to say yes
  • Access can be helped by services that offer ‘individual, tailor-made support’ and that are based on knowing the person with learning difficulty really well.

  • Access can be helped by providing what is called an “umbrella” of support, where “small steps at a time” are taken so that it is not so far to fall.

  • Access can be helped when everyone communicates in the way the person with learning difficulty prefers (for example using Makaton or a symbols board).

  • Access can be helped when staff from different services (for example health and social services) work together.

High expectations and positive attitudes

  • We need to believe in what people with learning disabilities can do- their capacities and their capabilities.

  • We need to do positive assessments, where we start with what people can do and not that they cannot do.

    "I will find something else [job]. I am not a failure. I am a determined person" [Mathew Smith]

How and why is access achieved? Part 1

Someone nodding to yes
Being willing to try new things

  • Access is about trying new things, which may mean being brave and taking a risk.

  • Taking a risk is about doing things differently. This means you might look silly or get things wrong. But this does not matter because taking a risk gives us dignity and makes us feel that we are worth something.

  • We need to help people manage risk rather than avoid risk.

  • Taking a risk, might involve letting go. For example, when parents of people with learning disabilities “let go”, so that they can live independent lives.

Being creative

  • Being creative means seeing challenges, not problems.

  • If one approach doesn’t work – ‘try another way’.

  • Money makes things possible, but it needs to be used wisely and creatively.

How and why is access denied? Part 3

Jackie’s story

When I left School I went to a Social Service Training Centre. I earned 25p a day to make up boxes and screw things together for televisions. This was then stopped and I left. Since then I have not earned any money of my own, although I wanted to.

I worked voluntary in a nursery for some years. As they said they couldn’t afford to pay me, they gave me gifts and vouchers as payment on my birthday and Christmas. This was sweets or a £5 Woolworths voucher. I finished Play Group after Dad died.

I then worked in a charity shop with no salary. My job was to make the staff drinks, and clean the toilets and the kitchen. One of the staff used to send me to pay her gas bills. This was a worry to me as I had a lot of money and had to find the shop to pay the bill---When I said this, the member of staff told the Manager that “If I didn’t leave she would”. So the manager told me to go, as she didn’t want to lose the lady. I was not supported by her----This made me feel bad and I felt hurt.

I am currently looked after by my carer, who pays me £5 a week to clean her house. This is where I live. Because I want to work and be independent I have contacted my key-worker that I see at the Day Centre on a daily basis, to ask her to put me in touch with an employment agency. I am waiting for them to contact me. I would like to do a cleaning job with a contract and a salary.

How and why is access denied? Part 2

a thumb down gesture
Services that do things “by the book” but still seem unfair
  • Services can be denied to people with learning disabilities because of the way staff have to work. For example people with Autism and Asperger’s syndrome can be denied access to a social worker because they don’t meet the official criteria for having one.

  • It doesn’t seem right that people with learning disabilities can get very different access to services based on where they live. For example, people living in Southampton have got access to “City Limits Employment Project ”, but people who live in Portsmouth have nothing like it.

  • When services are organized around individual care packages, they can prevent access to important social relationships and shared support.
Interference and over-protectiveness

  • Interference from professionals happens a lot when people with learning disabilities want to start relationships.

  • Staff can be over-protective by treating people with learning disabilities like children and not allowing them to spend time alone with friends.

  • People with learning disabilities want access to new experiences. They want to try things out without being over-protected.

Low expectations and negative attitudes

They always tell us we can’t do it, without giving us a chance to try”

  • Research shows health professionals have poor attitudes toward people with learning disabilities. They can be fearful, negative, have little awareness and experience of communication disabilities.

  • Support workers need to think of people with learning disabilities as capable - which may take a leap of faith.

How and why is access denied? Part 1

a thumb down gesture

Fear of taking a risk

Access should be about trying to make good things happen, rather than trying to prevent bad things from happening [Jane Seale]
  • Staff can think more about risk assessment and avoiding risks than about making access happen.

  • Accessing new things often involves risk for the person with learning disabilities. People with learning disabilities sometimes want to take risks but professionals can be afraid to take a risk in case something goes wrong.

  • Access is being able to go to the cinema without the threat of being carried out, because you are a fire risk.

  • Access is being able to have friends over, without support workers telling us we can’t “because of insurance”.

Systems that can’t change to meet our needs

  • When support workers only work when it suits them and not when it suits the people with learning disabilities the access is not giving us what we want-it is inflexible.

  • Access is not meeting needs when people with learning disabilities lose their benefits because they have taken on temporary or part-time work. It is hard to have to re-apply for benefits.

  • Access is not meeting needs when it is run by other people’s timetables, rotas or holiday schedules (for example care workers).

  • Access is unfair when staff organize “days out” and don’t give any choice about where to go or what to do, especially when people with learning disabilities often have to pay the costs of support staff on the “day out”.

  • Rules and restrictions can stop people with learning disabilities having freedom and choice.

What is involved in getting access? Part 2

image of someone speaking up

Being able to communicate (talking and being listened to)

  • Communication is central to access: it opens doors to having control. Not being able to speak doesn’t mean not having anything to say.

  • Access is supported when people listen.

  • Access can be denied when professionals ignore what people with learning disabilities think the important issues are.

  • If people are listened to then decisions can be made based on all the information.

Being ready and prepared for access

  • Access is helped when you teach people the skills to help themselves.

  • Access is hard when people are not properly prepared. For example, not being ready to start a job.

  • Access is helped when people with learning disabilities can show what they can do. For example, making CD-ROMS of people's skills so that people with learning disabilities can show people what they can do when go to job interviews.

  • Time is important We need time to learn, time to communicate and time to practice. We need to work to the time (pace) of people with learning disabilities.

  • Having the knowledge, the confidence to ask for things and good networks can help you gain access. It is what researchers call 'social capital'.

What is involved in getting access: Part 1

Having control

  • Access should be something that is in the control of people with learning disabilities.

  • Access is about having control over your own life. Having your own money, meeting people who make decisions and influence planning. Access is about being involved in meetings about our own lives and having the option to live with friends and not just in single flats.

  • Access is about more than getting into places and getting information. It is about taking control of our lives and being allowed to take risks. Access is about being aware of rights and responsibilities, learning skills, finding good friends and being able to earn money.

  • Access is about choice and independence on our terms, not a support worker's terms.

  • Access is about supporting people with learning disabilities to choose the gender of their support worker. For example, some women do not like being supported by men.

Taking risks and having opportunities

  • Access is about independence. Access is having the opportunity to take risks and make mistakes. Access is not worrying about things like insurance cover and whose fault it might be if things do not work out the way they were planned.

  • We need to encourage “risk taking”. For example, supporting people to spend time alone (independent living).

  • Access cannot happen without both risk and trust.

What kind of access do people with learning disabilities want? Part 5

Access that is across the board; that happens in every part of our lives

  • Having access in one area of life (for example work) can be hard if you don’t have access in other parts of your life (for example at home).

  • Being treated differently in different areas of life is hard. For example, being treated like a colleague at work but like someone ‘in care’ at home (for example, supported living centre).

  • Barriers are often in layers, when you take one down you have to tackle the next one. For example, to access employment you need a job, you need transport to get there, you need an alarm clock to get to the transport on time, and you need support to keep the job.

  • Having access to technology at school but not at home is something that happens a lot.

  • Getting jobs for people is helped by positive assessment –where you start with what people can do rather than what they cannot do. You work on the idea that everyone can learn.

  • Access is fragile. It can be easily lost or broken. If one person has a good access experience, it does not mean that another person in the same time and place will have the same good access experience.

What kind of access do people with learning disabilities want? Part 4

Access that offers the chance to move on and progress

  • People with learning disabilities want a chance to move on in their lives and at work. They want to get better at something or to try something different or a little bit harder.

  • We need to build networks when people are young, so that relationships have the chance to progress and last over a persons’ lifetime.

Access that is the same for everyone

It can be frustrating when people with learning disabilities are given access to the spaces that other people use, like colleges, but are still not allowed to do the things that other people do.

Stories of education and employment: Darren, Drew, Wayne and Robin- Supported by Judith and Clare

Darren, Drew, Wayne and Robin wanted to tell the seminar group their experiences of education and employment. First of all they all met together in a pub one evening and shared their experiences of school, college and work. Judith and Clare helped them organize their ideas and write these down on a set of posters. They then took the posters to the seminar and used them as a starting point for telling their stories.

When talking about School these are things they liked:

Wayne: P.E, making cakes and cooking dinners
Drew: P.E & the climbing frame. BUT “When I went up the climbing frame they pulled me down because they were scared I would have a fit”. Darren: Helping out people in wheelchairs and school trips.

When talking about School these are the things they did not like:

Robin: “I cleaned my teeth at 10 p.m. I got caned. I used to get my finger strapped.”
Darren: “Locked in a classroom for an hour. Not fair”
Drew: “They made me touch a holly bush for being naughty”.

When talking about college, these are things they liked:

Darren, Drew, Wayne & Robin: “Meet people”; “have a
laugh”; “atmosphere”; “gets me out”.
Darren: Animal care
Drew: Sport, computers and cooking
Robin: Cooking and computers
Wayne: Bricklaying, painting and decorating, sport, cooking.

When talking about college, especially the social aspects, these are things they did not like:

Drew: “In the canteen, me and my friends aren’t allowed
to play music- other students are”; “I get told-end that call -other students use their phones”.
Darren: “Getting Split up in class [from girlfriend]
Drew: “Not allowed to kiss in the canteen- students my teachers don’t know get away with it”.

When talking of employment everyone agreed that they would like to have a paid job, but that it was difficult to get paid work:

Wayne:: All the money is good. I can leave it in the bank or buy clothes or games for my Play Station.
Darren: Doing work experience has to be something you enjoy
Robin: I’d like a job in Tesco- get paid and put the money in my bank account.

What kind of Access to people with learning disabilities want? Part 3

Access that is permanent or long-term: Jeremy’s story

I was at college, doing a gardening job for the Borough Council. I got paid for this. Then I got moved, although I did ask Services if I could stay as I enjoyed it so much. They said No.

[1] found me employment with the Borough Council, with a salary, funded for a year. This was a gardening contract. When I left the area, Glory found me another gardening job. I had to start at 7am and was taken to a house to cut the grass. This was for a trial period of one week and it did not last.

Glory then got me a job, which I got paid for. I had an interview, got the job and started on the Monday. The job I was given was to cut the grass which was on a very steep slope which I had difficulty with. I was then given a different mower and asked to cut the flat areas, which I managed fine.

On the Wednesday of the same week, Andy from Glory came to tell me “they didn’t want me any more”.---This left me hurt and upset.

[1] Not the real name of the agency

What kind of access to people with learning disabilities want? Part 2

thumbs up gesture

Access that is about give and take

  • Access is a two-way process, where people can access each other.

  • People want access to friendships where there is autonomy (freedom to choose); quality (being like others); reciprocity (give and take) and intimacy (physical and emotional closeness).

Access that is permanent or long-term

"We have to keep at it all the time. If we’ve got it wrong for people with learning disabilities we have got it wrong for an awful lot of other people as well.” [Duncan Mitchell]

  • It can be easy for access to happen once, but it is hard to make it happen again and again.

  • Getting work experience or starting jobs that never last more than a few weeks feels like a false-start. Sometimes jobs come to an end and we don’t know why.

  • Access is greatly helped by projects that can show what is possible with proper support. But when the money for these projects runs out it can stop good practice being spread and shared.

  • Access is not something that happens and is finished. Access needs to be worked at all the time.

  • People with learning disabilities want access to be something that is permanent (forever) and not just for a short time. They don’t want access to be a one-off, once only effort.

What kind of access do people with learning disabilities want? Part 1

thumbs up gesture
Access that is real

  • People with learning disabilities want to be able to make real choices. They want to have all the information they need to make those choices.

  • Sometimes professionals see barriers to access, that should not be seen as real barriers.

  • It is a challenge for professionals to make access appropriate and meaningful. Some professionals have the skills to do this, others will need support.

  • We can tell the difference between real access and access that is not so real. For example being given a job but not being paid a proper wage.

Access that is meaningful

  • People want access to real jobs, jobs that match their skills and interest. They don’t want just any old job.

  • At School there is a danger that we will focus on doing well in tests and not on what people with learning disabilities have really learnt.

  • We like to experience things (for example, at museums and heritage sites) that mean something to us. We like to experience things that have a link to the real world.

  • At college, people want access to a curriculum that is personalized to them, where they have control and choices.

Access that is provided as normal or standard practice

  • The idea that 'special people' need 'special teachers' and ‘special equipment’ can be a barrier to gaining access to an ordinary life.

  • It is not right that sometimes in order to get access you have become a “special project”.

  • It doesn’t always feel right when access is understood by others to mean having to make a special effort to get ordinary things.

Concepts of Access: What did we find out?

Access is a common word, and so you might think it would be easy to define. Indeed some of our seminar participants came up with definitions to try and help our thinking:

Access is the opportunity to use something or enter a place. It is important for people with learning disabilities to gain access to things in order for them to feel like they belong. [Rebecca Pockney]
When we talked about “access” in our seminars, there was a lot to talk about and understand. Our discussions focused on six key questions:

1. What kind of access do people with learning disabilities want?
2. What is involved in getting access?
3. How and why is access denied?
4. How and why is access achieved?
5. Who should be helping access to happen?
6. How do we improve access in the future?

In this blog, we will now tell you a bit more about what we discussed for each question.

Concepts of Acces: Story-Telling

listening to peoples' stories of access
In our seminars it took us a while to work out how we could share ideas about “access” in a way that everyone could understand. Eventually we learnt that “story-telling” was a really good way to help everyone share ideas. Story-telling gave everyone a voice and an identity. People told their stories in different ways, but we always listened.

When I lived in the hospital I did not speak because I got punished if I did. But when I came out and joined groups like People First, I thought “I might as well use my tongue”. [Mabel Cooper]
We will share some of those stories with you in this blog and try to use them to show important points.

Concepts of Access: Introduction

sharing ideas

This blog tells the story of a group of thirty or so people who met six times to discuss what the term “access” meant to them when thinking about people with learning disabilities.

The meetings were organized by Jane Seale and Melanie Nind at the University of Southampton and funded by the Economic and Social Science Research Council (ESRC).

Jane and Melanie contacted lots of people and groups to ask them if they wanted to take part in the seminars. They contacted people who lived and worked in Southampton as well as people who lived and worked around the country.

Lots of different kinds of people came to the six meetings (we called them seminars). There were researchers, practitioners (for example support workers, occupational therapists and social workers) and of course people with learning disabilities.


We ran six seminars over two years, each seminar talked about a different access topic.

Seminar 1: November 2005: Personal Accounts of Access
Seminar 2: February 2006: Access to Education and Employment

Seminar 3: June 2006: Access to Health, Social Care and Citizenship
Seminar 4: November 2006: Access to Culture, Environment & Human Rights
Seminar 5: February 2007: Access to Community and Friendships
Seminar 6: June 2007: The Past and Future of Access


The main aim of the meetings was to discuss whether we all understood “access” the same way and if we could develop a shared understanding of “access” for people with learning disabilities. We thought that if we can understand “access” better, we might be able to make “access” better.

In each of our six seminars we tried to do different things so that everyone had a chance to have a say and join in. The range of activities included:

  • Listening to speakers and asking questions;
  • Taking part in workshops where there was a chance to do things like take photographs, role play or work in small groups;
  • Sharing experiences in discussion groups or “round-tables”.

Lots of different people gave the presentations, ran the workshops or lead the discussions including people with learning disabilities, practitioners and researchers.

After each seminar we sent out notes and tried using symbols, to help people to read and understand what we had written.

ESRC Funded Seminar Series: Concepts of Access

Economic and Social Research Council logo

The purpose of this Blog is to report on an ESRC funded seminar series called "Concepts of Access for People with Learning Disabilities which ran between 2005 and 2007. There are official reports of the project which can be found on the ESRC web site and the School of Education website.

A PowerPoint presentation giving an overview of methods and early results can be found here.

It is our intention that this blog serve as a more accessible summary of the discussions and knowledge sharing that took place during the seminar series. We hope that readers will comment on our findings and reflections and help to keep the discussions ongoing.

Jane Seale and Melanie Nind
School of Education, University of Southampton