Autism and Homelessness – Increasing autism awareness and improving access and engagement in homelessness services

By Dr Beth Stone

Autism is disproportionately over-represented in homeless populations. However, little is known about how autistic people experience homelessness and how best to support them. (more…)

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New Research: Exploring the role of adult social workers in supporting parents with learning disabilities

By Beth Tarleton and Gillian MacIntyre

The lives of parents with learning disabilities have been given increasing attention by policy makers and practitioners in recent years and there has been a growing awareness of their particular support needs and the barriers they face in parenting their children. (more…)

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‘Substituted parenting’ – a term with no apparent consensus, clarity, consistency of meaning, or transparency as to its application by the family courts.

Project team: Nadine Tilbury (Policy officer for the Working Together with Parents Network (WTPN)) and Beth Tarleton (WTPN Co-ordinator and project PI)


“Substituted parenting” What does this mean in the family court?

We aim to be in a position to answer this question by the end of our 18-month project (April 2023) and are extremely grateful to the Nuffield Foundation for providing the funding and support that will enable us to do so. (more…)

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Can research help to address inequalities faced by people with learning disabilities?

Ensuring that that our research considers and promotes equality, diversity and inclusion is central to the work we do at the School for Policy Studies. Working in partnership with communities and stake holders to identify research questions that matter and ensuring that studies are co-produced wherever possible helps achieve these aims. This series of blog posts looks at some of the ways what we research and how we go about it incorporates EDI principles.

In this post, Kate Bowen-Viner (Social Policy PhD student) explains how research in the Norah Fry Centre for Disability Studies is helping to tackle inequalities faced by people with learning disabilities. (more…)

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Another Blog on the C-Word.

Professor David Abbott, from the Norah Fry Centre for Disability Studies, looks at collaboration and power sharing in coproduced research.

It’s #CoProWeek if you’ll excuse the twitter short-hand. And with a whiff of, ‘This is what I did in my holiday’ news, I am not long back from a summer school about co-production at the rather glorious and gloriously named, University of the Highlands and Islands.

One of the things I liked about the course was that we were comprised of researchers, activists, heads of charities, community agitators and leaders, and policy and engagement types. We shared a commitment to making things change and making things better in our respective communities. I think some of us went searching for the perfect way to do coproduction and of course in that respect we were usefully disappointed. Two main learning points for me, about which more below, were: 1. Coproduction behoves us to rethink who is ‘we’ and who is ‘them’ and ‘they’? 2. In the overall endeavour of research, who has a say, who always has a say and who rarely or never has a say?

It seems to me that lots of folks are in search of ‘true’ co-production, some holy grail of perfect collaboration and power sharing. We are awash with toolkits, guidance, good practice, courses and webinars about coproduction. It’s an industry in and of itself. I wonder if there is more of this than actual coproduction.

In my field at the intersection of social policy and disability studies, there is a long history of problematising the role and historical dominance of non-disabled people doing research on disabled people. The movement towards more inclusive research with disabled children, youth, and adults, including those with learning disabilities, is now however fairly well established.

In my first research job with a disability focus, our young disabled people’s reference group held a fairly long, no-holds barred discussion about whether or not I should be in the room as a non-disabled person. It was very uncomfortable for me but they were rightly asserting their power and asking a legitimate question. So, coproduction for me sometimes has a feeling of ‘emperor’s new clothes’ but also something co-opted for better and sometimes worse to actually mask power differentials. I can still really only whisper in lower case about being part of a so-called coproduction team evaluating a so-called coproduced government policy programme “with” (lol) disabled people. The volume on coproduction was high but the reality was draconian and grim.

What I can say, from my own experience of being part of a project team made up of user-led organisations, disabled people’s organisations and university researchers, are three things:

  1. It felt like coproduction because it was hard and mostly uncensored. We had similar goals but I think the wider team sometimes felt I was a bit slavish to the research proposal and agreement with the funder. Others sometimes wanted to ‘get on with it’ or change things. I often did too but felt a bit uptight with the burden and privilege (?) of being the budget holder (see below).
  2. It worked well as coproduction because we played to our agreed strengths and interests.
  3. When we asked participants why they had decided to take part in research interviews, several said it was because of the team. Some said they would have put the paperwork in the bin straight away if it had just come from “the University”. The nature of the team reassured people about the underlying values of the research and that there was some presumption of trust and safety.

Money matters and I mentioned above that I had been the budget holder in our work together even though in fact the collaboration was well established and the need for research established before I was ever invited in as a researcher. (I liked this. To me it turned on its head the usual idea that coproduced research is about the researcher inviting the non-academics, the non-researchers into the tent. Plus, note the ‘non’ rather than what people actually are – experts in all kinds of domains.) But the reality is that many funders require the budget holder or principal investigator to be based in a University or the NHS or some other statutory service. This doesn’t rule out coproduced collaborations but the power is already and instantly a bit unequal.

This is why the Disability Research on Independent Living & Learning (DRILL) programme was so neat as the world’s first major research programme led by disabled people. Not to my credit, but I can recall feeling irked that such a big funding opportunity excluded me from applying missing, initially, the point that this was entirely right and massively exciting and important. My initial annoyance presumably mirrored by groups routinely excluded from or hampered by the set-up of research funding streams.

If I can end by directing you to elsewhere it’d be to this brilliant podcast which discusses what to my mind is a wonderful, authentic piece of coproduced research with young disabled women living shorter lives but exerting the value, joy and expertise that their lives engender. “Coproduction is not about having all the answers, but about learning together,” say the researchteam. Amen sisters.

David Abbott is a Professor of Social Policy in the School for Policy Studies at the University of Bristol and an Associate Director of NIHR School for Social Care Research. He tweets things about research, cake and the countryside at @davidabbottbris 

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How transformed is care?

Dr Sandra Dowling, a lecturer in Disability Studies at the Norah Fry Centre for Disability Studies discusses deinstitutionalisation in the context of the Transforming Care Policy programme.

People with learning disabilities are still, in some circumstances, leading institutionalised lives – the Transforming Care programme has a long way to go, and we must not forget those people with learning disabilities with the highest levels of ‘need’ who are experiencing the highest level of separation from an ordinary life. Recent decades have seen significant changes in the lives of people with learning disabilities in the UK. Once routinely institutionalised, distanced from home communities or their Right to a life like any other, people with learning disabilities were relegated to the shadows of the everyday and had limited opportunity to effect change. This article suggests these issues might still be affecting too many people with learning disabilities in 2018.

Advocacy and activism amongst people with learning disabilities and their allies has been a powerful force in altering the opportunities available to some people. To be respected, to be heard, to have choice and to really have the chance of a life like any other have been common demands. For many people these demands, these requests, have to some extent been realised. In the UK today some people with learning disabilities live in a home they have chosen, some have a job, some have regular contact with family and friends and some feel part of their community. Too many do not.

The challenge to realise the fundamental human rights of this section of the population is ongoing. The urgency of the challenge is very much determined by personal position. If you are a person with learning disabilities or indeed an ally, these challenges are of course urgent. Although recent policy does commit to a transformation in social care for people with learning disabilities, urgency to transform this to practice is not consistently apparent.
Major policy initiatives and legislation in recent years have produced a convincing rhetoric to support ideas of individual autonomy, inclusion and a role in decision making about important life matters. The Care Act 2014, for instance, details guidance for adult social care which, importantly, includes the principle of individual wellbeing. In practice wellbeing involves people having control of their day to day life, living in suitable accommodation and being able to contribute to society. It is a requirement of The Act that local authorities take people’s views, wishes and beliefs into consideration, and that their efforts support what people themselves want to achieve in their own lives.

The Transforming Care Policy Programme produced a raft of reports, guidance and policy following the shocking abuse of people with learning disabilities residing in Winterbourne View Assessment and Treatment Unit. The overall aim of Transforming Care has been about improving health and social care services to enable people to live in the community, to have good support and to be close to home. It aimed to address the high numbers of people with learning disabilities living for too long in Assessment and Treatment Units (ATU), often at a long distance from their families and without adequate discharge planning. However, since the scandal broke in 2011, and following a robust policy response, little has changed. The numbers of people in ATU settings has remained stubbornly high, provision of sufficient support in the community has not met need and discharge remains an elongated process for many.

Narratives of Home, a study funded by the NIHR School for Social Care Research, conducted within the Norah Fry Centre for Disability Studies (NFCDS), has interviewed 18 people with learning disabilities and three parents of people discharged from Assessment and Treatment Units (ATU) during the lifetime of Transforming Care. This narrative study has collected people’s stories of resettlement in the community following their hospital stay. Of those interviewed, 12 were male and 6 were female. Time spent in ATU settings ranged from 4 – 20 years. The legacy of institutional living clearly impacted on their resettlement experiences.

The factors which are identified as important to individuals are just what you would expect. Security, choice, a valued social role, friendships, fun and the opportunity to take pleasure in things which are important to you. But what is different is that the people that we interviewed, even though living in the community, still often live within parameters defined by others. Some described their attempts to ‘get out’ of the ATU by ‘doing what the doctors said’ or ‘just do what you are told, keep your head down, get through all the programmes and hope for the best’. These experiences travelled beyond the walls of the ATU into their now ’independent’ lives in the community. In interview people checked with present support workers whether they were saying the ‘right thing’, or whether it was ‘ok to say this’. Some were so heavily medicated that they could not remain awake throughout the interview.

Choice and autonomy was found in things such as choosing how to decorate your home, or what to have for a meal. A deeper sense of independence of thought and action though, remained elusive for some. Institutionalisation, just as a hundred, or fifty or twenty years ago produces the same results. It dis-empowers individuals, depleting independence of thought and sense of self. A good life happens at a deeper level than what can be seen on the surface of community living. The need to address issues of identity and equality remain pertinent. Deinstitutionalisation remains a goal.

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