Norah Fry Research – Page 2 – Comment and analysis

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

Posted on January 25, 2017 by policystudies

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.

European citizens who are disabled: what about them?

Posted on July 5, 2016July 19, 2016 by policystudies

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

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 26^th, 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.

Nothing about us without us

Posted on June 15, 2015June 12, 2015 by policystudies

Agnes 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.

Inaugural disability lecture at Staten Island College, New York today

Posted on May 5, 2015 by policystudies

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.

Co-production and change for disabled people

Posted on April 15, 2015 by policystudies

Val Williams discusses research around support for disabled people

Social practices can be enabling or disabling

Imagine you are the woman in this picture, a patient going to your doctor to talk about symptoms you’ve been having. The patient here is a disabled woman who is sitting directly in front of the doctor, with her personal assistant taking notes for her, out of the doctor’s direct line of sight. This might seem a trivial thing, but going to the doctor might not always work so well for some disabled people. The doctor might talk exclusively to their carer or to a family member, instead of engaging directly with them. Or of course, they may not have a third party to help them remember what has been said. All these things are important when you want to get good health care, and they may require just a few changes in the way things are routinely done. Kerrie Ford, in the picture above, set up this scene back in 2010 as part of a training pack arising from a research study about support practices, in which she was a researcher.

Although disabled people might traditionally be seen as part of the problem, they can find their own solutions. For instance, in our research about support practices, disabled people suggested and developed ways of getting their messages across, to shift practices and to enable them to challenge inequalities. Disabled people have their own movement, which is now a global one, and have banded together to re-define some of the problems that confront them, and to redress the power imbalances that they face when professionals, practitioners and medical authorities dictate what is best for them. The most pressing issues are to find better ways to understand how to change disabling practices, while we listen to and work with disabled people themselves. Our new study is aiming to do just that. ‘Tackling disabling practices: co-production and change’ has been funded by the Economic and Social Science Research Council (ESRC) which I lead at the Norah Fry Research Centre at Bristol. Disabled people’s organisations, represented by ‘Disability Rights UK’ (DRUK) are joining with us to explore the ways in which we can understand and theorise change, in a way that really makes a difference to disabled people’s lives, on their own terms.

Disabled people of all ages experience inequalities in society, in every part of their lives. There is strong evidence that disabled people are often amongst the poorest, as the recent poverty survey carried out at the University of Bristol has revealed and that they face abusive or inadequate support practices in everyday settings (Antaki et al., 2007). Further Pauline Heslop and her team found that people with intellectual disabilities were dying prematurely, with men dying 13 years earlier than non-disabled men, and women some 20 years earlier. Health care is simply not adapting to meet the needs of all. In the UK, most of these problems are the subject of intensive investigation, resulting in legal and policy reform. For instance, in 2011, a Panorama television documentary exposed the abusive treatment being perpetrated against people with intellectual disabilities in an ‘assessment and treatment unit’. Following this, that particular hospital was closed down and a Government Concordat was signed in 2012, which pledged a reduction in hospital placements for people with intellectual disabilities and ‘the closure of large-scale inpatient services’. Support was also provided for commissioners and practitioners in the form of workforce development, guidance and toolkits to ensure better practice. However, in 2014, a further report acknowledged that:

For decades people have argued for change and described what good care looks like, and how we can commission it….. but the problem remains. Why? (Bubb, 2014: 17)

The conclusion in the 2014 report is that we do know ‘what good looks like’, and indeed we also know how to get there, but that it is simply too easy to ‘do the wrong thing’. Yet again, a further series of recommendations ensued, which invoke the rights of disabled people and their families to better community services, along with a system for holding local authorities and other agencies to account.

Why then are some practices so difficult to shift? Our new project starts in April 2015, and aims to interrogate the turn towards ‘practice’ in social science, in order to see what it can offer to our understanding of what is going on in practice and how the goings-on could be malleable, could be shifted, and maybe made more productive. We do not want to demonize those who are there to provide health and social care support. Indeed, we know that all of us could be inadvertently discriminating against disabled people by the way things are set up – even in our own Higher Education institutions. One of the strands of research in our new project is being led by Sheila Trahar in the Graduate School of Education, to explore the experience of disabled students, from their own point of view, while Sue Porter will lead on research about the experience of disabled academics. Other strands will be led by Beth Tarleton, building on the ‘Working Together with Parents Network’ working with Nadine Tilbury, Danielle Turney and Professor Elaine Farmer, to analyse how to achieve better support for parents with intellectual disabilities; by Pauline Heslop, who examines reasonable adjustments in healthcare provision; and by Val Williams and David Abbott, who build on the approach to micro-analysis of interaction (Williams, 2011) collecting videos and recordings of what goes on between support workers and disabled people. All our research work in this project is about how we can make a difference, and how we can theorise those changes in a way that is useful for social science and for disabled people themselves. Therefore Bernd Sass at Disability Rights UK is central to everything, and in the research strand based at DRUK will be taking forward the notion of ‘user-driven commissioning’ to see how disabled people’s own actions can have an effect on changing local authority and health care structures.

We are particularly pleased that our ESRC project is based on several partnerships. Not only is the DRUK a key partner, but the project will also include Professors Charles Antaki from Loughborough University, Celia Kitzinger from the University of York, Chris Hatton from the University of Lancaster, Alan Roulstone from Leeds, Dr Stanley Blue from Manchester, and Sue Turner from the National Development Team for Inclusion (NDTI), as well as Professor Andrew Sturdy from our own Department of Management at Bristol. We are working with experts across the disciplines, who have different ways of conceiving of practice – from the high level policy and strategic decisions made by government, to the micro-detail of front-line support offered to disabled people. Instead of pointing fingers of blame at particular individuals or institutions, we want to find out more about how to understand social practices, so that we can enable them to change.

Val Williams is Reader in Disability, Policy and Practice in the Norah Fry Centre the School for Policy Studies

References

Antaki, C, Finlay, W.M.L., Jingree, T and Walton, C.(2007) “The staff are your friends”: conflicts between institutional discourse and practice. British Journal of Social Psychology, 46, 1-18.

Bubb, S. (2014) Winterbourne View – Time for Change. http://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commissioning-services.pdf

Heslop, P. et al. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): final report. http://www.bris.ac.uk/cipold/

Williams, V. (2011) Disability & Discourse: analysing inclusive conversations with people with intellectual disabilities. Wiley-Blackwell.

Multimorbidity guidelines falling short: National Institute for Health and Care Excellence (NICE)

Posted on November 4, 2014November 4, 2014 by policystudies

Pauline Heslop, Norah Fry Research Centre

The National Institute for Health and Care Excellence (NICE) has recently been consulting on the scope of proposed guidelines on multimorbidity. Multimorbidity is, in summary, the co-occurrence of two or more chronic medical conditions in one person. Yet the proposed scope of the guidelines will not, in their current form, offer guidance on multimorbidity in people with learning disabilities. So is this a problem that needs attention? Yes.

The recent Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) and other national and international studies suggest that people with learning disabilities have a greater number of health problems than others, and a greater variety of healthcare concerns than those of the same age and gender in the general population. This would suggest that particular attention must be paid to this population in any NICE Guidelines. Indeed, recommendation 3 of the CIPOLD report was that NICE Guidelines should take into account multimorbidity in relation to people with learning disabilities.

Despite this, the draft scope specifies that clinical issues that will not be covered include:‘Identification and management of specific morbidities associated with learning disabilities’. No justification for this exclusion is given, and this sentence alone raises four issues:

1) What does ‘associated with’ mean in practice, and what would be the threshold for a disorder to be ‘associated with’ learning disabilities?

2) Some people with the same condition (e.g. autism, cerebral palsy) may or may not have learning disabilities. As it stands, the NICE Guidelines would include people with autism and associated multimorbidity who do not have learning disabilities, but would exclude people with autism and associated multi-morbidity who do have learning disabilities. Clearly, this would be a nonsense.

3) No other groups with protected characteristics under the Equality Act 2010 are excluded.

4) No other groups of people with conditions that themselves have associated comorbidities are excluded.

In addition, people with learning disabilities (and people with dementia) are excluded from the guidelines in relation to ‘the management and organisation of care’ in relation to multimorbidity. Again, no rationale for this is given and no other potentially vulnerable groups have been excluded.

Although these exclusions are of serious concern, there is a second issue that suggests discrimination against disabled people, with the proposed use of Quality-Adjusted Life Years (QALYs) as the preferred unit of effectiveness. QALY is a measure of the value of health attributes in a single index number. The basic idea underlying the QALY is that a year of life lived in perfect health is worth 1 and that a year of life lived in a state of less than this perfect health is worth less than 1. QALYs are usually incorporated with medical costs to develop a cost-effectiveness analysis of any treatment or intervention. My concern is that on the QALY scale, the quality of life of those with illness or disability is ranked below that of someone without a disability or illness, suggesting that QALY gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled, and favours those with treatable conditions and those with greater potentials for health – in terms of functioning or longevity. Indeed the European Guidelines for Cost-Effectiveness Assessments of Health Technologies, which conducted the largest experimental survey ever undertaken in Europe to test the validation of QALY assumptions, concluded that the use of QALY indicators should be abandoned for healthcare decision-making.

In all, the draft scope for guidelines on multimorbidity by NICE has a long way to go in relation to equality for people with learning disabilities. To me it appears to be arbitrary, discriminatory and contrary to the requirements of the Equality Act 2010.

As supporters of people with learning disabilities we are raising our concerns about this. What will you do?

This is an edited version of a blog sent to the new Learning Disability Association England.

This blog was originally posted on the PolicyBristol blog.