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How we worked together to produce the Self Advocacy Projects Toolkit

6 November 2018

How we worked together to produce the Self Advocacy Projects Toolkit

DRILL Learning Report

What Makes a Good Self Advocacy Project?: the added value of co-production

BAROD with Jan Walmsley

Easy Read Points of Interest

This is about co-produced research funded by DRILL to define what makes a good self advocacy project and to make an Evaluation Toolkit for self advocates and funders to use

We are the five people who did the DRILL funded research together:

two self employed academic researchers (Jan and Bryan),

two activist researchers (Alan and Simon)

one supporter / technical advisor (Mal).

The four researchers all had equal roles and equal responsibilities. We also had support from Anne Collis, BAROD

The Report explains how we all worked together to co-produce the research and the Toolkit.

The Report considers what made it possible for co-production to work well.

The photo shows the team working together

How the Project started

This project started with All Wales People First. This is unusual.

Research usually starts in universities. This means people with learning disabilities do not usually control what gets researched.

The Director of All Wales People First had an idea for some research. DRILL (Disability Research for Independent Living and Learning) were offering research money for research controlled by disabled people. This meant there was a chance to put the idea into practice. The Director talked to Barod about his idea. Barod is a cooperative set up and run by a mix of people with and without learning disabilities who met through the People First movement. Barod put the Director in touch with Jan, a self-employed academic researcher, who had just the right experience to work with the Director and BAROD to develop the research idea into a good research proposal.

Why was this research project the top research priority for All Wales People First?


The idea was to develop a toolkit so self advocates could evaluate self advocacy projects for themselves. It would help them plan and run better projects. It would prove to funders and commissioners that the projects were worth funding. This is really important for self advocacy, because it is getting harder to get funding. Groups are closing all over the UK because they cannot get funding.

Getting the money and getting ethical approval

All Wales People First, Barod and Jan co-designed the project. All Wales People First sent the research proposal to DRILL. We were delighted that they chose to fund this project.

Barod has experience thinking about what ‘researching ethically’ means, and making accessible consent forms. Jan has experience with research ethics committees. We put our skills together, and got ethical approval from the Open University research ethics committee.

The reference group

Training

We needed to improve our research skills and get to know each other so we could work together as a team.

We met in Cardiff in March 2017 for 24 hours. We practised asking questions. Thbis was videoed. The first practices did not go well, but we got better.

We had not budgeted to run a pilot focus group, but we decided we needed to do one to test the changes we had agreed. A self advocacy organisation in England let us practise with them.

It really helped to have a project budget and timetable which allowed us time to train before we had to start the research.

The 24 hour meetings gave us all a chance to spend time together, getting to know one another over a meal.

Doing the training together gave us a lot to think about and reflect on.

The Research

We set up two teams, each with one academic and one activist researcher. We designed the focus groups and interviews together. One team ran focus groups with self advocates about their projects. The other team interviewed commissioners and supporters of self advocacy projects.

We did the data analysis together at a 24 hour research group meeting. We watched back parts of the videos and compared our notes.We broke the notes down and then merged them together using post-its spread out across a large tableWe designed the toolkit together using a mixture of meetings and email. We made all the key decisions together.

We took the toolkit to self advocacy organisations around Wales and asked them to test it with us. Then we made changes to the toolkit. The toolkit was launched October 2018 at the All Wales People First annual conference.

Focus group in Conway

Alan at work

How co-production added value

Academic researchers, Melanie Nind and Hilra Vinha (2012) came up with a list of reasons for coproduced research being better than traditional research. We have used that list to help explain how coproduction made this research work better and give better results.

Answering the right questions

The activist researchers and academic researchers had different ideas of what was most important to ask. By coproducing the focus groups and interviews, we worked out what to ask and how to ask it. This meant it was easier for self advocates to tell us what really mattered to them about self advocacy projects.

Getting to hear from the right people

Working together made it easier to recruit participants. Between us, we knew most of the leading self advocates and groups in Wales. We were already known and trusted. Jan knew a group in England who trusted her enough to let us practise with them.

Listening to and understanding what people with learning disabilities say

Alan used his experience as a self advocate to put people at their ease so they talked openly. Bryan and Simon found interviewees (without learning disabilities) were responding more thoughtfully because one of the interviewers has a learning disability. Based on our experience we would say that you should not do research about people with learning disabilities unless you have researchers with learning disabilities as part of the team, because you will not good quality data.

The research makes sense to the people it is about

The morning part of the focus groups had people doing activities and talking. Having a self advocate explaining activities made it clear that the activities were designed for self advocates.

Over lunch, Jan and Alan talked and agreed what they thought the key points were. They wrote these down in plain English.

In the afternoon, participants used activities and voting to look at the key points. They checked Jan and Alan had understood what the participants wanted to say.

The draft toolkit has made sense to the self advocacy groups who tested it. We believe this is because of our coproductive method of collecting and analysing data.

The research has an impact on the lives of people with learning disabilities

It is too early to say if the research will have an impact on self advocacy groups and self advocacy projects.

We know that people with learning disabilities are excited by the toolkit, and are looking forward to using it.

We know it changed all four researchers.

Summary of what we learnt about self advocacy projects at the Focus Groups

How we wrote the Report

We wrote the Report as a team.

When we met near the end of the project we made a timeline of what we had done, and we all added our thoughts about it.

Jan then went away and wrote a draft Report. The team made some changes, added ideas and put it into plainer language. Then Jan went off to write the final version. The team did a final check and made final changes before Jan sent the Report to DRILL.

Conclusion

We have a toolkit that works and uses self advocates’ ideas about what makes a good project.It should help self advocacy groups apply for funding for future work. We think this research has benefited people with learning disabilities.

The way we did this research gave us a better Toolkit than if the academics or activists had done the research by themselves. We think Nind and Vinha are right that working together makes it better research. Our funder, DRILL, gave us the space to start working together from the start. This meant we could make sure we asked the right research questions. We think this should be added to Nind and Vinha’s list of when co-produced research adds value.

Reference

Nind, M., & Vinha, H. (2012). Doing research inclusively, doing research well? Report of the study: quality and capacity in inclusive research with people with learning disabilities. University of Southampton. http://www.southampton.ac.uk/education/research/pr...

New learning resource for self advocacy groups

6 November 2018

New learning resource for self advocacy groups

I have pleasure in announcing this fabulous learning resource produced for All Wales People First and funded by DRILL, part of the Big Lottery. I worked with BAROD cic to produce this. They were fantastic colleagues. The next blog tells you all about how we produced this.

It will help self advocacy groups run their projects well, and make sure self advocates are in charge.

Let me know if you use it. We'd love some feedback.

Here's the link which tells you all about it and where you can download everything you need to use it

http://allwalespeople1st.co.uk/drill-toolkit-launc...

Survivors - why not?

21 February 2018

Survivors - why not?

Campaigners in mental health have long adopted the label ‘survivor’ to indicate both their journey through an often unhelpful system of care and their resilience in surviving to fight another day.

But to my knowledge this term has not been used by people with learning difficulties. This is surprising. Many leading self advocates I have met are challenged that they are not ‘really’ disabled because they appear self confident, poised, capable and professional. It is a double bind. The more skilled they appear as leaders, the more likely it is that they are dismissed as wrongly labelled and ‘unrepresentative’. Yet I know, because they have shared some of their life stories, that, despite appearances, they have gone through special education, they have been assessed, been obliged to live with people they have not chosen in group homes or supported living, or, worse, in secure accommodation. They have known what is is like to pass your days in adult training centres, or sitting at home for lack of money, support or opportunity.

Labelling yourself as a ‘survivor’ in such circumstances seems entirely justifiable. And a good way to counter those people who want to dismiss you for being too effective.

200,000 applications for Deprivation of Liberty Safeguards in One Year. What is Going On?

21 February 2018

I was prompted to write this Blog by this information for which I am indebted to an as yet unpublished paper written by

Lucy Series

In2015-16 local authorities in England received almost 200,000 applications for authorisation to deprive a person of their liberty.

She points out that this is more than three times as many detentions as under the Mental Health Act 1983 in the same year and more people than were detained at the height of the asylum era.

And then I was alerted by the inimitable Mark Neary to the extension of these Deprivation of Liberty Safeguards (DOLS) to people living in their own homes:

Steven Neary has had his first Community DoLS and it has been decided that he is being deprived of his liberty in his own home. To quote, “his care and support (1:1 in the home, 2:1 outside) amounts to a deprivation of his liberty”. The fact that he needs a support worker to accompany him when he takes some cake across the road to his uncle is now reframed from the support worker’s presence enabling Steven’s liberty to depriving him of it. This is likely to be the case across the country for every learning disabled person who needs support to live their life.

Neary 2017

What on earth is going on?

We appear to be living at a time when people with learning disabilities (and their families) are either neglected, left to manage in a travesty of a commitment to ‘independence’; or ever more regulated and controlled, subject to incarceration in secure facilities, or surveillance in their own homes.

Being a historian, I turned to the past to try to understand this phenomenon. Surveillance of families is not new. In the 1920s and 1930s, in the era of the now despised Mental Deficiency Act (1913), people who had been ascertained to be ‘defective’ were either taken into institutions, or left in their homes, with quarterly visits from Visitors appointed by and answerable to the Local Authority’s Mental Deficiency Committee. The Visitors reported on their charges. The purpose was explicitly to ensure that ‘defectives’ could not produce children. The Form they were required to complete included this question:

Is it considered that the control available would suffice to prevent the defective from procreating children?

(Model form enclosed with circular letter from Board of Control No. 717, dated January 1929).

If the answer to this question was negative the Committee would take steps to find an institutional place. But if the control was deemed to be adequate, ‘defectives’ were in most areas left to manage as best they could with the help of their families. Occasionally some financial or practical assistance was provided, to pay for dentistry, medical procedures, or even some tuition.

It was in many respects like the situation today. The control /neglect dichotomy is one of history’s great continuities. The contrast is striking: between 1 set of policies that seem to introduce and enforce draconian controls; and other policies that allow/encourage the neglect we know so many people, like Lee Irving[1], suffer. DoLs can regulate every aspect of your life – your home, if you are Steven Neary, is most definitely NOT your castle. But if you are trying to live independently and suffer harassment from neighbours or drug dealers move into your accommodation there is very little help available. If you are a caring family, doing your very best to support a disabled family member, and you ask for some help, as did Sara Ryan, all you get is an institutional place – and in this case with absolutely tragic consequences. One might also suggest that the situation in the 1930s actually offered more support – there are no quarterly visits now to people managing on their own, no little bits of financial help.

Ok, we historians are good at pointing out continuities. But we are not usually as good at suggesting answers. I’m going to have a go.

My first message is that there is no one size fits all policy solution.

Since 1913, there have been broadly 3 policy eras. The first was the institutional solution. This was a response both to eugenic fears – that the ‘feeble-minded’ were reproducing at a faster rate than more intelligent people and must be stopped – but also to stories of neglect and abuse, of people left in workhouses or mental asylums who would benefit from specialist institutions.

The second, starting in the 1970s after the extent of abuse and sheer misery in NHS run institutions was exposed (not note, through regulators but through investigative journalism), was ‘community care’. Although its meanings mutated over time, and according to who was speaking, broadly speaking community care meant building and running both residential homes and day centres to house and give occupation to adults with learning disabilities.

And the third, which really took off in the 21st century, was personalisation, giving people money to run their own lives. This was accompanied by the closure of segregated specialist facilities in favour of people using mainstream services. This is where we are now.

Each of these policy eras has repudiated the past as unenlightened, each has been accompanied by its own compelling ideological baggage, and each has failed. Not, necessarily, because it was wrong, but because it was under-resourced and poorly implemented. Institutions have a place, asylum for those who really struggle to manage, who are abused and taunted and need a place of safety. But not if they are understaffed, shut off, and either under-funded or a source of profit (or both). Personalisation is failing, not because it is wrong, but because it has been grafted onto a system ill adapted to managing it, because it has, conveniently in an era of austerity, taken ‘independence’ at face value to mean neglect, and because there just isn’t enough money.

So where does this leave us? In my view, it suggests that no one policy fits all circumstances. The ‘learning disabilities’ label is applied to a wide range of people, some of whom can flourish with a little support, but many of whom cannot. We will look in vain for the perfect policy answer, it does not exist.

My second point is workforce.

Never, in all the policy changes, has there been commensurate investment in a workforce fit for purpose. Have you ever wondered why it is psychiatrists who are the medics responsible for learning disabilities? It is not, after all, a mental disorder. The reason, according to Mathew Thomson who wrote a magisterial account of Mental Deficiency in the mid twentieth century, was because no one else wanted such a lowly specialty without a cure. Psychiatrists, the lowest of the low in terms of esteem, saw it as a way to carve out territory. This does not mean it is the best solution from the perspective of the people they ‘treat’, but to my knowledge it has not been seriously challenged.

It is not only psychiatrists. The only dedicated professional pathway is nursing. They may do a good job, but it is not ideal when we repudiate a medical model.

The same mistakes keep happening. When the institutions closed many staff just moved over to the new homes, bringing institutional attitudes and practices with them. When personalisation was introduced it was those same local authority personnel who had managed the old ‘we know what is best for you’ system suddenly expected to embrace individual empowerment. It just does not work.

In 1979, Dame Peggy Jay, in one of many reports on learning disability nursing (find it here,) made herself unpopular with the nurses by arguing for a dedicated workforce which combines the best of nursing and social work skills, to make a success of the ‘ordinary life’ her Report advocated. My sense is that we need to revisit this idea of a workforce fit for purpose. It’s not the same sort of workforce Jay advocated because she was visualising people living in groups, staff working in teams. The workforce to make a success of personalisation are people who work, largely unsupervised, in people’s homes, whose job is to support their citizenship. Far from an easy job, yet, there is no training for it.

Because other solutions have failed, are failing and will continue to fail, increasingly people look to the law and to regulation to correct the policy gaps and failings. Hence the DoLs, the ineffectual efforts to reform them, the use of the Human Rights Act to wrestle Steven Neary out of the control of Hillingdon Local Authority, the feeble CQC reporting but not acting when care is appalling. Both law and regulation are blunt instruments, incapable of making sense of and managing the many and diverse human dilemmas thrown up by the challenge of supporting people with learning disabilities to be fellow citizens. Maybe, just maybe, people trained specifically to that end, trained by people like Steven and Mark Neary, Sara Ryan, Gary Bourlet, Learning Disability England and my friends at My Life My Choice, might be a way to really make a difference.

[1] Murdered by his so-called ‘friends’

Why study the history of learning disabilities?

8 December 2016

Why study the history of learning disabilities?

'Forgetting the extermination is the final act of the extermination itself' (Raoul Hilberg)

Is spending time thinking about the past is an unnecessary luxury when making things better in the present needs all our attention?

I do not think it is.

And in July 2016 I had the luxury of being able to spend 2 days thinking about this at the Social History of Learning Disabilities Conference, in Milton Keynes. I came away more than ever convinced that it really matters to remember the past, and use it to reflect upon the present.

Why I support Learning Disability England - and you should too

29 November 2016

Learning Disability England launched in June. It is a broad coalition of people and organisations, led by self advocates, who believe people with learning disabilities and their families need a loud and effective voice. This is why I think academics need to be involved.

Back in 2015, I answered a call Simon Duffy put out challenging academics to rally round the Learning Disability Alliance. I offered to help. It has taken a lot longer than I thought possible, but now we are ready to launch a network of academics to support LDE.

Time not to stay silent

23 November 2016

Yesterday we launched these learning materials about the history of learning disability in this country. http://bit.ly/2gyzIFG. We heard from Deb Evans about her son, Eden, who has been institutionalised since he was 17. He is now 25. It was a reminder that institutions are not only a thing of the past.

Being at the launch set me thinking afresh about the scandal of the way people with learning disabilities have been treated, and continue to be treated in our 'civilised' nation. Legislation in 1913 authorised people with learning disabilities to be shut away. People spent years, decades, even a lifetime in those places. They were not criminals. Merely unfortunate enough to have failed ill thought through tests. What is the difference between a stone and an egg?