‘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.

Published family court judgments show that the expression ‘substituted parenting’ is often used during care proceedings in cases involving parents with learning disabilities and tends to result in the children being permanently removed from their families.

The term appears to be being used by local authorities when the support they have identified as necessary for the parents is extensive. They say the high level of support required equates to substituted parenting which is detrimental as it confuses children as to who is the parent. Since most parents with learning disabilities are likely to need long-term support, this approach risks becoming a discriminatory blanket policy.

Where has this term come from? What is the research evidence base for the concept and its conclusion that ‘substituted parenting’ or parenting by others is necessarily detrimental to a child’s welfare? What level of support is regarded as substituted parenting? Is it / should it be a matter of how much support is provided or, instead, should the question be how that support is provided?

Experienced family court lawyers are unclear how the use of this term has developed, ”… appears to be becoming an ‘orthodoxy’” or the ‘default position’ (Senior barristers – email).

“… the family would need … support throughout the children’s waking hours. That would be substituted parenting, not support.”  A Local Authority v G (Parent with Learning Disability) (Rev 1) [2017].

Whether the situation I have described could or indeed should be described as “substituted parenting” is a matter for others to decide… In the absence of a clear description of the dynamic that defines what substituted parenting is …” HHJ Greensmith in PQR (Supported Parenting For Learning Disabled Parents) (Rev 1) [2018].

It is this absence of a clear definition – and the dire consequences that follow a finding of substituted parenting i.e. removal of the child – that prompted our bid for funding to clarify what social workers, lawyers and judges mean by the term ‘substituted parenting’ and how it is applied in care proceedings involving parents with learning disabilities.

Our project aims to establish clarity, consistency and transparency in the understanding and application of the term by the family courts and to highlight good practice, where it exists.

Background to the project

All parents are entitled to support from the state to carry out their parenting responsibilities. So say the UN Convention on the Rights of a Child and the United Nations Convention on the Rights of Persons with Disabilities. The Care Act 2014 specifically includes parenting responsibilities as one of the eligibility factors for support and the central ethos of the Children Act 1989 is that children are best raised by their families, where possible, with local authority functions designed to provide support to the children and families.

The first edition of the Good Practice Guidance on working with parents with a learning disability (2007), published by the Department of Health and the Department for Skills and Education, emphasised the right to support, drawing heavily on the work by Beth Tarleton and colleagues in 2006, Finding the Right Support.

The 2016 and 2021 updates of the Good Practice Guidance by the Working Together with Parents Network did likewise.

And yet, despite this clear, rights-based foundation, cases were continually being reported where parents with learning disabilities were having their children permanently removed as they were unable to parent them safely without the right (or, in many cases, any) support.

In 2016, we started sending emails to the office of the President of the Family Division, highlighting published family court judgments showing local authorities’ routine failure to apply the principles of the Good Practice Guidance, when working with these families.

In April 2018, the then President, Sir James Munby issued guidance:

‘My primary purpose in issuing this Guidance is to bring to the attention of practitioners and judges, and to commend for careful consideration and application by everyone, the very important “Good practice guidance on working with parents with a learning disability” issued by the Working Together with Parents Network and the Norah Fry Centre in September 2016.’ Family Proceedings: Parents with a Learning Disability | Courts and Tribunals Judiciary

Almost overnight, the right to support began to be acknowledged by local authorities and their proposals scrutinised by the family courts.

‘ …Following the court’s request for additional evidence from the local authority including evidence of how the guidelines in respect of parents with a learning disability had been followed and direct evidence from the independent reviewing officer (in the form of a statement confirming her position in the light of the new evidence), the local authority reviewed its position’.

‘…The court is confident that this package of support …meets the obligations of the local authority to follow the Good practice guidance on working with parents with a learning disability (2007) revised September 2016 (The Guidelines) (Recognising the Role of the Independent Reviewing Officer (IRO)) [2018] EWFC B71 (08 November 2018)

Unintended consequence

It was all going so well… And then, we started receiving reports of cases in which local authorities confirmed that the necessary support had been identified and could be provided, but went on to assert that, such support would amount to substituted parenting, which was detrimental to the child’s welfare and so the child needed to be permanently removed.

We began to look into this concept of ‘substituted parenting’. We tried to find out where it came from, what level of support was considered to tip the balance from acceptable to unacceptable, whether costs and timescales were factors. We checked the literature, and we asked the academics and practitioners. We couldn’t find the information. ‘Good question’, they said.

We scrutinised published judgments, looking for mention of any analysis of the risk that the proposed support would amount to substituted parenting, and any options considered to address/reduce/eliminate that risk. We couldn’t find that either.

Timing

This project started 1st November 2021 and runs until April 2023. The timing couldn’t be better for us as the President of the Family Division, Sir Andrew McFarlane, has just released his report on the need for greater transparency in the Family Court: Confidence and Confidentiality: Transparency in the Family Courts and has confirmed that transparency will be a key priority for him over the next three years:

‘… it is legitimate for the public to know of these judgments [family court cases], to provide a basis for trust in the soundness of the court’s approach and its decisions, or to establish a ground for concern in that regard.’

’It is the case that the Family Court is currently not sufficiently transparent even to those, in particular the judges and the social work professionals, who are working within it. Educational opportunities are thereby being missed.’

Since the family courts are not open to the public, we depend on published judgments for finding out how care proceedings involving parents with learning disabilities are in fact being dealt with. Any move towards greater transparency, in terms of the number of judgments published and the level of information contained within them, can only lead to better and more consistent practices and thereby improved confidence in the fairness of the family justice system.

Next steps

We very much look forward to speaking with the social workers, lawyers and judges involved in working with parents with learning disabilities in the care proceedings context. We look forward to being able to highlight good practices found in the course of the study and to establishing consensus, clarity, and consistency as to the meaning of the term ‘substituted parenting’, and transparency as to its application by the family courts.

We particularly look forward to working with our Advisory Group of parents with learning disabilities. They will help to ensure that the findings of our study can be made widely available to parents with learning disabilities and in such a way that parents will be able to understand what is meant by the risk of support being considered to be ‘substituted parenting’, the significance of such a risk and, most importantly, how to avert that risk, where possible.

Because, in the much-quoted words of Baroness Hale in a landmark adoption case, “nothing else will do”.


This project has been funded by the Nuffield Foundation, but the views expressed are those of the authors and not necessarily the Foundation. Visit www.nuffieldfoundation.org.


 

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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 blogs looks at some of the ways what we research and how we go about it incorporates EDI principles.


In this blog, 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.

Research can and should contribute to improved outcomes for people with learning disabilities. Academics in the Norah Fry Centre for Disability Studies have revealed the stark inequalities that people with learning disabilities face. Research from the Centre found that the difference in median age of death between people with a learning disability (aged 4 and over) and the general population is 23 years for men and 27 years for women. Projects led by academics in the Centre have also drawn attention to inequalities parents with learning disabilities face, including being more likely to have their children removed from their care compared to other parents whilst not receiving adequate support with parenting. In collaboration with disabled people, research from the Centre is also highlighting how services for people with learning disabilities can improve.

In this blog, I describe three projects carried out by academics in the Norah Fry Centre for Disability Studies, explain how this research is contributing to improved outcomes for people with learning disabilities and summarise what we can learn from Norah Fry researchers about tackling inequalities through research.

Addressing premature mortality

Research from academics at Norah Fry is helping to reduce premature mortality and health inequalities for people with learning disabilities. Led by the University of Bristol and Professor Pauline Heslop between 2015-2021, the national Learning Disabilities Mortality Review (LeDeR) supported local areas to review the deaths of people with learning disabilities and to take learning from those deaths to improve services. This programme is the first of its kind. It was established after the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), led by Professor Heslop, provided evidence that people with learning difficulties are significantly more likely to die at a younger age compared to the general population and do not receive the same quality of care as people without a learning disability.

The University of Bristol’s involvement in the LeDeR programme came to a planned end in May 2021, but the work undertaken by Professor Heslop and other researchers from the University will have a lasting impact. For instance, with support from the University of Bristol, the LeDeR programme established a central point where all deaths of people with learning disabilities are notified. This central point will continue to be used. During the contracted period with the University of Bristol, the project also analysed core data from local reviewers and produced national annual reports which highlighted key trends. Alongside other achievements of the LeDeR programme, key learning from this research supports improvements in the quality of health and social care services for people with learning disabilities.

NHS England will continue with LeDeR. After reflecting on the programme when their contract with the University of Bristol came to a planned end, they published a revised LeDeR policy which incorporates a review process that will include reviewing the deaths of people with autism.

Supporting parents with learning difficulties

Research in the Centre is also helping to support parents with learning difficulties/disabilities. Parents with learning disabilities are overrepresented in the child protection system largely because of concerns regarding neglect. Reports suggest that professionals do not have adequate time, skills and support to work with parents with learning disabilities and provide them with the help that they need.

In collaboration with groups of parents, Beth Tarleton led research to investigate what good support for parents with learning difficulties looked like in three local authorities. The project used the term ‘learning difficulties’ rather than ‘disabilities’ to refer to parents with learning disabilities and those who do not meet the threshold to receive support, but struggle with everyday life and protecting the welfare of their children. The project explored local authority sites that had been identified as ‘successful practice’ by Working Together with Parents Network which supports professionals who work with parents with learning disabilities.

Based on their research, the project team made key recommendations regarding support for parents with learning disabilities, including:

  • The need for professional support to be both consistent and flexible

Parents learning difficulties are life-long. Therefore, their support needs and circumstances may change over time.

  • Practitioners should build and maintain mutually trusting relationships with parents

This would help to avoid repeated crisis-driven interventions and make sure that ongoing light-touch support can be provided.

This project took a collaborative approach. Input from two advisory groups (one professional advisory group and one parent advisory group) was invaluable for making the research relevant and accessible to parents with learning disabilities. Both groups guided the approach to working with parents. The parent advisory group collaborated with researchers to produce a video to make findings accessible to others with learning difficulties.

Access to housing

Work from researchers in the Norah Fry Centre for Disability Studies is helping to improve people with learning disabilities’ access to housing. In collaboration with Deborah Quilgars from the University of York and The NIHR School for Social Care Research, academics from Norah Fry are working to understand the ways that people with learning disabilities can be better supported to access their own tenancies, when this is their choice.

The project involves a review of housing for people with mild to moderate learning disabilities, including what tenancy options are available to people with learning disabilities who are on the edge of social care. Detailed interviews will also take place with people with learning disabilities who are living in social housing and private rented tenancies, as well as their families and other people who support them.

This project is being co-produced with a steering group made up of people with learning disabilities. As with other projects in the Centre, guidance from people with lived experience has been invaluable to developing an inclusive approach to research. For instance, the steering group highlighted that advertising for research participants should explicitly request participants from black and minority ethnic backgrounds to avoid studies only listening to the voices of white people with learning disabilities. Prompts like this from people with lived experience are important for maximising inclusivity and taking an intersectional approach that acknowledges how different social justice issues (e.g. disability discrimination and racism) cross over with one another.

Research tackling inequalities

Projects in the Norah Fry Centre for Disability Studies highlights how research can contribute to addressing inequalities faced by people with learning disabilities and also draws attention to the need for:

  1. Co-production

Working with people with learning disabilities to research the inequalities they face helps to make research inclusive and relevant.

  1. An intersectional approach

Acknowledging how different aspects of a person’s identity (e.g. disability, gender, ethnicity) combine to create different forms of discrimination or privilege is important for addressing the inequalities different people with learning disabilities experience.

As demonstrated by projects in Norah Fry, research using these approaches can play an integral role in highlighting, and developing ways to tackle, the stark inequalities faced by people with learning disabilities.

 

 

 

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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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Disability needs to be central in creating a more just and equal society

Professor Val Williams, from the Norah Fry Centre for Disability Studies, discusses tackling disabled practices and how we all have a part to play in getting things changed.

When times get tough, disabled people always seem to go to the bottom of the pile. It’s as if the problem of ‘disability’ is always one step too far, or something which cannot be contemplated until everything else is sorted out. For instance, the debates about BREXIT have centred on trade agreements and free movement of citizens. How often do we talk about the rights of disabled people, and how they may be protected under existing EU legislation?

The UK itself has laws to protect disabled people’s rights, with the 2010 Equality Act. But constant vigilance is needed to remind public services that they have a duty to provide reasonable adjustments for disabled people. UK financial cuts are impacting most heavily on disabled people, and a recent report by the charity SCOPE highlights that, on average, for every £100 earned by a disabled person, only £67 is left after disability-related costs.

Disabled people certainly incur additional costs by virtue of their additional needs, but is disability too much of a ‘cost’ for society? We would argue that the reverse is true: economic, political or social crises create moments when disabled people must be at the forefront. This is what we have been documenting in our project ‘Getting Things Changed’ (Tackling Disabling Practices: Co-production and Change).

Disabled people have always faced problems which are created because society is structured without disability in mind.  For instance, the rail transport system assumes that all passengers can step over a gap between a train and the platform, that they can walk to their seat, and indeed that sitting in a ‘standardised’ seat is an option. At a more subtle level, we have also found countless practices in our study which exclude or marginalise disabled people. The way things routinely get done in everyday life can be problematic, and that can include the material infrastructure of a building as well as the ways in which people interact. For instance, people with dementia might rely on familiar, clear signage to find their way in and out of a building, or the facilities in it, but they also need people who will give them time to communicate, or understand how to wait for a response in a respectful way. In parts of our project, we are looking at the barriers disabled patients face in English hospitals. With regular news items about the crisis in the hospital system,  we know that change must happen.

We argue that this is the time to include disabled people, not just as recipients of care, but as change makers. Our project is co-produced with Disability Rights UK and with other groups of disabled people who are actively involved in the research. Given that disability is part of humanity, we should all be working WITH people with disabilities, to create a more just society where all are included.

Understanding a disabling society

So how can we start to understand why things get stuck? Since the 1980s and the introduction of the social model of disability, Disability Studies theory has focused considerable attention on the dichotomy between the social and medical model of disability. There have been continual debates since that time, with UK theorists arguing since the 1980s for a new understanding of disability and impairment. Oliver (2013) sums up neatly what the real issues are now:

“While all this chatter did not matter too much when the economy was booming, now it no longer booms it is proving disastrous for many disabled people whose benefits and services are being severely cut back or removed altogether”

Have disabled people’s lives become more restricted  since the 1980s, or have the concerns of disabled people themselves been overtaken by theoretical debate?  And how can we as activists and academics change that tide? In our recent article from ‘Getting Things Changed’ we argue that we need as a society to go further than debates about ‘what is disability’. The social model directed our attention towards the external barriers facing disabled people, and now we need to find better ways of analysing and understanding those barriers.  Many people use the word ‘culture’ here, to bemoan the difficulties caused by unhelpful attitudes and approaches which can be evident in congregate services such as care homes or hospital. In our study, we have turned towards the ideas of social practice theorists such as Elizabeth Shove, which have helped us to understand  how things get done, how practices get shaped – and therefore how we can get a handle on change.

An example from our wide-ranging project comes from the insights of people with dementia. Since 2009, we have had an English Government policy called ‘Living Well with Dementia’ . What matters for people with dementia is the quality of life they are leading right now, and our work with the ‘Forget-me-Not’ group from Swindon has helped us to unpick what this might mean.

Here are some words from the researchers with dementia from the Forget-me-Not group:

“Everyone will tell you the same thing. You’re diagnosed, and then it’s ‘You’ve got dementia. Go home and we’ll see you next month’. What we need is for someone, like a counsellor or someone else with dementia, to tell us at that point ‘Life isn’t over’.  You can go on for ten or fifteen years. And you’re not told, you’re just left. And I thought, tomorrow my day had come. The fear and the anxiety sets in, and then the depression sets in, doesn’t it? I think when you’re diagnosed, you should be given a book. And on the front of the book, in big letters, it should say: ‘Don’t panic’.”

In terms of social practice theory, these are people who do not want to be seen through a medical lens as individual tragedies, but are turning around the whole meaning of dementia into something where they are in control, can support each other and where they have a voice.  However, social practice theory also reminds us about the importance of material resources. For instance, in order to meet each other and to have a collective sense of peer support, people need to have spaces which are not institutionalised, which they feel they can ‘own’.  All too often, we have seen very well-intentioned group activities taking place in old, large halls, or where people are routinely sitting in configurations which make communication difficult. But we have also seen the Forget-me-Not group, in an ordinary, homely environment, where staff members interact on a basis of equality with the members who have dementia.

This is just one of many examples where we are finding that people CAN do things differently, and where the ‘culture’ can change towards inclusion and empowerment. We hope our research will provide the impetus to take some of this further.

Change will never be completed – but we will be presenting the latest research from our project and discussing some of these ideas at our launch event on 25 May. Book your place now to find out more about the many strands of the project how we can all be change-makers.

This post was written by Prof Val Williams with assistance from Prof Pauline Heslop, Beth Tarleton, Wendy Merchant, Bernd Sass and Joe Webb at the Norah Fry Centre for Centre for Disability Studies.

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More people with learning disabilities should be on TV!

My name is Beth Richards, I have a learning disability and I am an actress. I want to educate the world about people with learning disabilities through my acting, and think that mainstream TV in the UK should be doing more to represent people like me.

I am doing some research to find out why so few people with learning disabilities are on TV and what can be done to change this. At the moment data suggests that only 1.2% of people on TV have a disability (Mental Health Foundation, 2014) and we still don’t know how many of these have a learning disability.

My research is part of a much bigger ESRC funded project called “Getting Things Changed” at the Norah Fry Centre for Disability Studies, University of Bristol. This project is looking at how the barriers people with disabilities in the UK face can be overcome by changing the way people do things.

Very little research has been done to explore why so few people with learning disabilities are on mainstream TV, or in the media in general, but organisations like Mencap and The Mental Health Foundation have campaigned for things to improve. Some actors with learning disabilities have also spoken out about the issue. For example, Sarah Gordy, an actress with Down’s syndrome who has been on shows like Downton Abbey on ITV and The Silkworm on BBC 1, said:

“It’s important that people with a learning disability are seen on our screens and on stage – simply because we exist.”
(The Huffington Post, 2017).

These campaigns are starting to make a difference as both the BBC and Channel 4 have made commitments to improve the representation of disabled people on their channels. For example, the BBC has committed to quadrupling the number of disabled people in its shows by the end of this year, whilst Channel 4 launched its 360 Diversity Charter in 2015 and made 2016 it’s Year of Disability. I think these commitments are great, but it is hard to find out what impact they have had as the channels aren’t reporting their success widely. From a viewer’s perspective, it doesn’t seem like there are more disabled people, especially people with learning disabilities on TV, than there were a few years ago.

One reason why the numbers of disabled people on TV might not have increased despite the BBC and Channel 4’s commitments, might be down to the way TV is made. Shows are written, commissioned, casted and produced by different groups of people. This means there are lots of different layers where disability can be excluded or discriminated against. Many of them out of the control of the television channels themselves.

This seems to suggest that the way TV is ‘done’ affects the number of people with learning disabilities who end up on our screens. I hope to explore this issue in my research by talking to writers, commissioners, casting agents, producers and actors both with and without learning disabilities about the industry. I am going to look at what these people say using Social Practice Theory to help understand how the way TV is ‘done’ can be changed to help get more people with learning disabilities on TV.

I know people with learning disabilities can be actors and have lots of talents. We are role models for others because we know what it’s like to grow up with a learning disability.

Hopefully my research can help change the media for the better.

If you want to be involved or have anything else you could help me with my research, please contact me at beth.richards@bristol.ac.uk or my PA Victoria Mason-Angelow victoria.mason@bristol.ac.uk. You can also find out more about my research and the wider ‘Getting Things Changed’ project on our website http://www.bristol.ac.uk/sps/gettingthingschanged/

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The Values of Assessment: It’s easier when you work in partnership

Professor Val Williams, from the Norah Fry Centre for Disability Studies at the School for Policy Studies discusses a recent project to understand people’s personal experiences of the social care assessment process.

Every day we hear about a different crisis in the NHS, some of which, at the least, can be attributed to problems in the funding of social care.

So, what happens to people who need to ‘apply’ for social care? It’s not like phoning up the doctor’s surgery and seeing your GP. To get into the social care system, you first need to have an assessment. And that assessment process will go on to determine how you will be funded, and what support may or may not be considered essential to enable you to live your life. Sounds simple? Not necessarily so. As the findings from our recent research ‘The Values of Assessment: Disabled adults and social care’ show.

The research team, led by Val Williams and Sue Porter at the Norah Fry Centre for Disability Studies, worked in partnership with members of a peer support network at the West of England Centre for Inclusive Living (WECIL), a local disabled people’s organisation, to understand their personal experience of assessments. These stories revealed the sometimes deeply felt emotions and negativity which can be created by an assessment. It can, for example, be very difficult to portray yourself as ‘needy’, to tell someone else about all the things you cannot do, rather than share the positive things you can do.

The 2014 Care Act was being implemented at the time this research was carried out, requiring social care practitioners to focus on disabled people’s own chosen outcomes in their lives, and to carry out assessments in a personalised way, so that disabled people achieve ‘wellbeing’. Everyone is different and real personalisation means recognising that fact.

All this sounds great, but the disabled people who worked with us knew that things can feel very different in practice.

The core part of this project, led by Jon Symonds, included interviews with 30 practitioners, and the messages which came from them were actually very similar to those from disabled people. In fact, the disabled researchers in the WECIL group helped to find meaning in the practitioner interviews, by listening to extracts and discussing them with the team. The theories of social care assessments might sound good, but they are often hard to achieve in practice.

‘Social workers have so many pressures on them that it is sometimes difficult for them to put the principles into practice’ said Symonds. ‘Resource Allocation Systems restricted the amount of funding available to meet a person’s needs and although many would advocate for disabled people with their managers, some would also negotiate with a person which demands were reasonable and more likely to be funded’.

The disabled people interviewed in this project said that what was most needed was ‘trust’. Practitioners also spoke about establishing a personal relationship, listening and taking time for trust to build. However, practitioners described meeting with some potential clients they felt could not be trusted:

‘Sometimes they need help but don’t want it, and sometimes they want help and don’t need it’. (Practitioner interviewed in the ‘Values of Assessment’ research).

So, there is still a need for social workers to exert ‘professional judgment’ to help some people decide what will best enable them to experience wellbeing. These are the more difficult things to discuss, and to reconcile with the views of disabled people themselves, who want control over their own lives. For truly independent living, people need support and may even need help in reaching a decision about that support. However, they also want to be part of the conversation, to speak up for themselves, and to be full partners in that assessment process. Achieving that joint interaction is much more than just ticking a box on an assessment form.

On January 19th 2017 we launched a set of videos, which were created by members of the team led by Jon Symonds, and feature the experiences of the WECIL group. These videos were designed to start the conversation between social work practitioners and disabled people who use social care. The most important thing to learn from the disabled people in these videos is that they could understand, empathise and work with the practitioners who were assessing them.

The videos from this project are now freely available, and the project team would like to hear back from anyone who has used or watched them – for training, for discussion, or just for fun. We would like to know how they’re being used, and how they could make a difference.

The ‘Values of Assessment’ videos are dedicated to Dr Sue Porter, who died suddenly on 11 January 2017, whose inspiration and leadership made this project possible. Her untimely death was a tragic loss to the disability movement, and to disability research.

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European citizens who are disabled: what about them?

Val Williams, from the Norah Fry Centre for Disability Studies comments on the implications for disabled people of Brexit 

Val Williams
Val Williams

The shock of the BREXIT decision is not just an issue for disabled people who now have to live in a smaller, diminished country. It also has implications for disabled people across Europe, and particularly perhaps those with intellectual (learning) disabilities.

But what about our partnership with disabled people across Europe?  In 1973, when we joined the EU, disabled people in this country did not commonly have a ‘voice’, nor were they taken seriously as a political force. At that time, I had just started working with young people with learning disabilities, within a largely segregated system, which had only just started to recognise their right to an education. Since then, disabled people have themselves taken a lead, and are rightly proud of their achievements within the disabled people’s movement – for instance, over institutional closure, and the ideas of the social model and inclusion. During the 1990s and 2000s I took part in various EU Social Fund projects, where our experiences as UK partners was not just to speak English, but to offer progressive and supportive ideas, while learning alongside other member states. The European Disability Forum has posted the following since the BREXIT decision, which reminds us of some fundamental values:

We strongly believe that a common EU human rights agenda is better achieved together. The tone of the UK campaign, which was characterised by a divisive public debate on migration, reminds us of what is at stake and what we need to fight for, within a strong EU: common values of non-discrimination, human rights and freedom of movement.

Will UK ideas on disability now be discredited?  What of the gains in thinking on independent living?  Institutional closure across parts of Eastern Europe?  Turning specifically to the position of people with intellectual (learning) disabilities, during the latter part of the 1990s, People First groups in the UK set out to link with their European counterparts, and to set up a ‘Europe People First’, genuinely led by people with intellectual disabilities themselves. The movement in Europe has always been within the framework of families’ organisations, but the umbrella organisation ‘Inclusion Europe’ now has a self-advocacy section. This is a European Platform of Self-Advocates, which is composed of member organisations across Europe.  Nothing is perfect, but compared with the 1990s, there has been progress towards an understanding that Europeans with intellectual disabilities have a right to live like others, to self-organise and to get support to have a voice.  And importantly, UK self-advocates have always been strong in demanding these things, and in making a common cause across Europe.

In the UK we are still aware of the many steps that need to be taken towards including people with intellectual disabilities in the wider disabled people’s movement. There is also already a European network, not just through the Disability Forum and an EU umbrella organisation for disabled people’s organisations (DPOs) across Europe.  In the light of the BREXIT decision, they have themselves reached out to disabled people in the UK, as mentioned above in their moving statement on the need to continue the struggle for human rights together across Europe.

Not least, accessible information is key to a meaningful conversation with all disabled people, including those with intellectual disabilities – see the progress made for instance by public and Government organisations in communicating with all. One out of many examples would be Public Health England’s easy English guide to avoiding Flu. UK efforts to work for equality in information, in voice and within public debates and research are now widely recognised across Europe, with a recent publication in Austria on Inclusive Research for instance, written both in English and in German.

As with all disabled people, the position of people with intellectual disabilities has moved on. In the 1990s I was able to visit both Germany and France, on some visits accompanying people with intellectual disabilities. Both countries had strong segregated (albeit meaningful) policies on employment – people lived within a ‘network’ of services, particularly in Germany, and in both countries, they were to some extent treated (and addressed) as children, unlikely to have anything useful to say or to contribute to the debates.  Compare that with the debates in those countries today. On June 26th, the Frankfurter Allgemeine newspaper in Germany led its Society section with a discussion of sexual rights of disabled people with autism. The headline is that people with intellectual disabilities would have aspired merely to be ‘satt und sauber’ (fully fed and clean) until now; the argument is that they can also aspire to enjoy life!   That would not have happened before the progress made by bringing disabled people together, through the European Union. The UK voice is important, and the connection between disabled people across Europe needs to continue, so that disability rights remains a common cause.

Val Williams is Reader in Disability Policy and Practice, Head of the Norah Fry Centre for Disability Studies, and Executive Editor of Disability and Society.

 

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Nothing about us without us

medium-313746Agnes Bezzina, Teaching Fellow in social work in the School for Policy Studies, discusses her research on service user involvement of people with a disability.

Parliamentary discussions last month featured an interesting debate on the setting up of a Sign Language Council to advise government on issues related to the development of Maltese sign language.

There was a level of excitement that Maltese sign language, the language of the deaf community in Malta, may receive deserved recognition.

Yet, there was also a sense of disillusion as questions arose concerning this council’s five-member composition, with a requirement for only one of these to be a deaf person.

How can this token representation be considered acceptable in Malta, one of the first countries to sign the UN Convention on the Rights of Persons with Disabilities? Should there not be a legal requirement for the council to be made up of a majority of deaf persons as experts of their language?

The Nothing About Us Without Us collective slogan advocated by people with disability worldwide and radically promoted in Malta at the turn of the millennium contributed to the interest in studying service user involvement (SUI) in social work.

Through my research, I tried to identify the major prerequisites for nurturing service user participation in social work education, policy and practice by using a mixed methods approach in my doctoral study entitled ‘Service user involvement in social work: emergent dynamics in the Maltese context’.

Initially, an online survey was undertaken with social workers in Malta, examining their attitudes towards SUI and their experiences of it. In the second phase, semi-structured interviews were conducted with social work senior managers, educators and policymakers, reviewing their understanding of SUI and its implementation at an organisational level.

Finally, semi-structured interviews were carried out with actively involved service users, exploring their conceptualisation of SUI and their involvement experience. One of the objectives of my study was to examine the nature and extent of SUI in the social sector.

The study exposed the lack of SUI in social work and services in Malta. Despite various conferences and seminars on the subject being organised by social work organisations, its implementation remains sparse.

While the majority of social workers (97.2 per cent) agreed that service user involvement is of value to the social work profession, 80.7 per cent believed that there was room for more contribution by service users in their particular agency or department.

An examination of the social and cultural factors that may impact on the development of SUI revealed three central factors: the smallness of Malta, the dominance of patronage and paternalism and the prevalence of charity and voluntarism.

An analysis of these features brought to light the importance of face-to-face personal relations within a small country. There were indications of the enduring nature of patronage systems highlighted by research in the 1960s, with evidence of patronage and paternalism also permeating service user relations. The charity model was still seen to prevail, although voluntarism was considered essentially desirable and deemed to differ from a patronising charity perspective.

This research also brought to light the difference in perspectives of service users and professionals in relation to SUI. Professionals generally adopt a consumerist perspective, one in which participation is outcome-oriented, has a functional purpose and in which there are no power considerations.

In contrast, service users advocate for a more democratic outlook to SUI, one that is motivated by principle, in which the participatory process itself is crucial and where the focus is on transforming power relations.

Interestingly, the disability sector emerged as an exemplar of SUI in the social sector. Advances in the 90s and the first decade of the new millennium saw individuals from a range of impairment groups, including physical and sensory impairments, as well as intellectual disabilities, being actively involved in various forums. This brings us back to the initial questions regarding the setting up of the Maltese Sign Language Council and the potential impact of not including – or, rather, excluding – people with disability in issues that relate to them.

My research revealed that it was generally the activism of individuals from select service user groups that generated the momentum for greater participation and influence. Participation gives rise to increased involvement and control.

Non-participation, however, results in powerlessness and an acceptance of the ‘observer’ status. This timely research challenges the authorities to reflect on the proposed minimal – arguably tokenistic – involvement of deaf persons on the Sign Language Council and to consider instead a genuine participation on this important body.

Only with such concrete measures will the Nothing About Us Without Us slogan translate into effective SUI that rebalances the power disparity between the social services bureaucracy and those whose well-being depends on it.

Agnes graduated from the University of Nottingham with a PhD in social work. Her degree was funded by the Strategic Educational Pathways Scholarship (Malta), which is part-financed by the EU Social Fund under Optional Programme II – Cohesion Policy 2007-2013, ‘Empowering people for more jobs and a better quality of life’. This was first posted on the Times of Malta.

 

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Inaugural disability lecture at Staten Island College, New York today

A special lecture is taking place this today (05/05/2015), called ‘Curtains Up! Inclusive Research for Social Justice’. It is the inaugural lecture which has been funded by a TV personality in the USA, Geraldo Rivera, and is being given by Dr. Val Williams from Norah Fry Research Centre, School for Policy Studies, with Beth Richards from the Misfits Theatre Group, and Vicky Mason who is a PhD student at Norah Fry. Our link with Staten Island is through former colleague Barbra Teater, who is now living and working in New York, running the social work programme at the College of Staten Island, part of the City University of New York.

The lecture commemorates a notorious institution called Willowbrook State School, which housed literally thousands of children and young people with learning disabilities from around 1948 until its closure in 1987. Known as the last great disgrace in US disability services, Willowbrook was the subject of a TV expose by a (then young) Rivera in 1972. With his camera crew, he broke into the wards, revealing the filthy and animal-like conditions in which children were being kept. It makes for horrific viewing.

Since then, of course, much has changed. Val, Beth and Vicky will talk today about the exciting and important things achieved by people with learning disabilities, including Beth herself. The focus is on drama but also on inclusive research, and how important it is for people with learning disabilities to have their voices heard – something that is explored in the programme MSc Disability Studies: Inclusive Theory and Research hosted at the School for Policy Studies.

We hope to forge continuing links between Staten Island and the School for Policy Studies.

 

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