Introducing a new learning resource for creating inclusive care home environments for older LGBT+ residents.

Dr Wenjing Zhang and Dr Paul Willis from the Centre for Research in Health and Social Care, School for Policy Studies, write on the importance of equality and inclusion within care environments and the launch of the Care under the Rainbow digital resource.

17th May 2019 marks IDAHOT Day – International Day Against Homophobia, Biphobia and Transphobia. This is a significant day for a number of reasons. For LGBT+ groups and organisations it’s about recognising and speaking out against the violence and discrimination experienced by lesbian, gay, bisexual, transgender and intersex people and all other people who belong to sexual and gender minority groups around the world. 17th May also marks the date when the World Health Organisation decided to declassify homosexuality as a mental disorder in 1990 (subsequently removed in 1992) – this was another successful challenge to institutional homophobia. The UK Government’s recent survey of over 108,000 LGBT+ respondents shows us that we still need IDAHOT day and other local and international campaigns against sexuality and gender-based violence and discrimination. The survey reports that 68% of respondents with a minority sexual orientation said they had avoided holding hands in public with a same-sex partner for fear of a negative response. 40% of respondents had experienced a hostile or violent incident in the 12 months before the survey because they were LGBT+.

In the UK, LGBT+ people who are over 60 years of age have lived through decades of criminalisation (until partial decriminalisation of sex between men in 1967), pathologisation (treatment of homosexual as a mental disorder and ‘unhealthy lifestyle’), and social and moral condemnation of same-sex relationships and desires across communities. For older lesbians, their existence has only been recently recognised in law with the implementation of equal rights law over the last 18 years. For trans individuals, the Gender Recognition Act in 2004 finally enabled people with a medical diagnosis of gender dysphoria to change their legal gender and marked a shift in the State starting to protect the civil rights of trans individuals.

Living in a hostile and oppressive climate across one’s lifetime can lead to deep mistrust and low confidence in legal bodies, institutions and helping professionals, such as mental health professionals, GPs, social care workers and housing officers. We know from Stonewall research conducted in 2011 that older LGB adults (55+) report lower confidence in health and social care professionals compared to heterosexual older adults – in turn this may prevent older LGBT+ individuals from seeking health and care support from service providers when they need it later life. In care and nursing homes older LGBT+ people are often invisible, and their personal lives, histories and relationships can be hidden behind a double-layered curtain of ageist and heterosexist/ cisgenderist assumptions. Organisations such as Age UK and Opening Doors London are working hard to challenge these assumptions and to create safer, more equal environments for older LGBT+ people across services, including care and nursing homes.  We’ve sought to make our own contribution to creating inclusive care environments for older LGBT+ people with the creation and launch of our new online learning resource titled ‘Care Under the Rainbow’.

On Friday 17th May 2019 the University of Bristol and The Diversity Trust jointly hosted the ‘Care Under the Rainbow Launch Event’. This launch showcased a new online resource for care home staff and managers for making care homes more inclusive for older people who identify as LGBT+. The aim of this new resource is to provide managers and staff teams with tools for leading discussions and educational sessions about the importance of promoting equality between residents in care homes and of valuing diversity amongst staff and residents.

This new resource includes four short films on the inclusion of LGBT+ residents (Care home staff talking, Lesbian, Gay and Bisexual inclusion, Creating Trans inclusion and Werner and Alan’s Story), case studies for use in staff training and development, top tips and things you can do for making care homes more inclusive, and legal timeline highlighting key changes in equality law and policy in England and Wales. The learning materials and films are free and hosted on the Diversity Trust website: Care under the Rainbow. This resource has been co-produced by LGBT+ individuals with the involvement and advice of older LGBT+ individuals and the work has been supported by a wide range of organisations, including Skills for Care and Stonewall Cymru.

Here are some ways in which care home managers and staff might use the learning materials:

  • Staff team meeting – watch 1-2 of the films together and/or discuss 1-2 of the case studies to raise discussion about the importance of respect of equality and diversity among residents.
  • Recruitment exercise – use one of the case studies in interviews with new staff members as a way of assessing applicants’ attitudes and values.
  • Induction – request new staff to view the films and read the documents online and then discuss 1-2 of the case studies together to gauge how new staff members would respond to residents from similar backgrounds.
  • Continuous professional development – organise a half-day training session for all staff. Start with watching the films together, test participants knowledge of the law with the legal timeline (e.g. quick quiz) and finish with discussion of the case studies in pairs or small groups of 3-4 participants.

In addition to the showcase of these learning materials, the launch event included the following talks: Paul Willis (Senior Lecturer, University of Bristol) presented messages from recent research on health and social care, ageing and LGBT+ people in later life; Berkeley Wilde (Director and Founder, The Diversity Trust) talked through the project story and showed the audience how to access this learning material; and Alice Wallace (Director, Opening Doors London) introduced the ‘Pride in Care’ project being led by Opening Doors London.

A panel discussion was also held on making care homes more inclusive. The panel included Paul Willis, Berkeley Wider, Alice Wallace, Ian Boulton (South Gloucestershire Councillor for Staple Hill Ward), Stuart Wright (Dementia Care Lead, Brunelcare) and Jenny-Anne Bishop OBE (Chairperson & Outreach and Training coordinator for The Unique Transgender Network North Wales and TransForum Manchester).

We were delighted that a very diverse audience came along to participate in the launch event including care home staff and managers and members of the LGBT+ community. Following the launch, we will be disseminating the learning resource to a wider audience, including care and nursing homes across South West England and South Wales, and would like to explore future research and practice-focused collaborations.

If you would like to find out more information about the launch event and project story, please search our twitter hashtag #careunderrainbow or visit the project website, hosted by the Diversity Trust.

We’d love to hear your feedback on the learning resource, email: paul.willis@bristol.ac.uk

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What Is To Be Done About Sexual and Domestic Abuse at UK Universities?

Dr Geetanjali Gangoli, Senior Leturer and researcher in the Centre for Gender Violence Research recommends further action to eliminate gender violence within UK Universities.

The elimination of gender-based violence (GBV) is a human rights priority both internationally and domestically. The new prominence of movements such as #MeToo, #TimesUp, and #MeTooPhD brought to the forefront of public consciousness the prevalence of GBV and the scale of the impact on women’s everyday lives in education, the home, and the workplace. The World Health Organisation found those experiencing GBV were more than two times as likely to experience mental health issues and thus declared it “a global health problem of epidemic proportions”.

The limited existing evidence on sexual and domestic abuse at UK universities

No study has investigated domestic abuse specifically at UK universities, but there are indicators that it occurs amongst students and staff. For instance, the Office of National Statistics indicate that young adults aged 18 to 24 tend to be at higher risk for domestic abuse. Indicators for university staff can be drawn from wider studies (e.g. Hester et al., 2017; Walby and Allen, 2004), showing that approximately 20% of women and 4% of men experience domestic abuse during their lifetime.

Several studies of varying quality have assessed students’ experiences of sexual violence. Findings from these studies suggested that: for female students, 70% experienced sexual violence, and 5% rape; and for male students, 12% experienced sexual assault. The most recent study by Brook (2019) found that 56% of both male and female students surveyed experienced unwanted advances and assault.

One study on sexual violence and university staff queried students about staffs’ use of sexual violence towards them, with 41% of female and male students reporting they experienced staff sexual misconductOnly 6-8% of students who experienced sexual violence reported to the police or university, compared to an estimated 17% of victims of sexual violence in the general population.

multi-site study of the sexual violence impacts experienced by students at English campus universities found that 100% of those who had experienced sexual violence reported a negative psychological, emotional or physical health based impact. Out of these, 27% contemplated suicide or self-harm15% developed an eating disorder15% abused alcohol or drugs and 12% reported becoming more prone to, and frequent absence from university due to, illness. Additionally, 50% of those who reported being sexually assaulted indicated having experienced a negative impact on their academic performance, and 11% indicated that the progress of their studies was delayedThe Revolt Sexual Assault and Student Room (2018) study found 25% of victim-survivors changed, dropped modules, missed lectures and/or tutorials, and 16% suspended or dropped out of their degree programme.

There are no direct indicators of university staffs’ experiences and impacts of sexual violence, but inferences can be drawn from wider studies. Conducted with general samples in the UK, some studies suggest the prevalence for women may range from 20% experiencing assault or rape in their lifetime to 52% experiencing sexual harassment in the workplace since the age of 16. There is also limited information on men’s experiences. What evidence is available suggests that prevalence for men may range from 4% experiencing assault or rape in their lifetime to 9% experiencing sexual harassment in the workplace since the age of 16.

UK university responses: Ad hoc

Universities function within national and international legal frameworks. However, there are no specific legislative duties on UK universities in terms of data collection, prevention, and response akin to those under USA law, such as; Title IX 1972; the Clery Act 1990/1998; VAWA Act 1994/2013; and Campus SaVE Act 2013.

Universities have potential obligations under the Equality Act 2010 and Human Rights Act 1998, but only to respond appropriately when victim-survivors disclose, not to prevent the violence in the first place. Guidance has been issued by UUK for investigating “student misconduct which may also constitute a criminal offence” but this fails to recognise the complex reality of sexual violence cases and is not mandatoryUUK (2016) issued eighteen recommendations, followed by a further twelve recommendations in 2018; but again none are mandatory.

After the UUK Taskforce: Changing the Culture recommendations in October 2016 there was a flurry of ad hoc university activity stimulated by HEFCE’s (now Office for Students) Catalyst funding pilot projects, including bystander training, reporting systems, and awareness campaigns. UUK (2018) has since reported to Ministers that there were variations in developments across the sector, and there is a need for senior leadership to commit to long term planning and resourcing of interventions, as well as data collection. University responses remain patchy with the Women and Equalities Select Committee concluding that the current voluntary approach is not working. The final evaluations of the Catalyst projects are due this spring, including the findings of a survey to establish what progress has been made against the Changing the Culture recommendations.

Moving towards more consistent university responses in the UK

In March 2019, the Government Strategy Refresh ‘Ending Violence against Women and Girls’ was published and included a recommendation to generate regular data on the nature and prevalence of sexual harassment. We currently await the government response.

Speaking at a conference in March 2019, Jessica Trahar, Head of Student Welfare and Safeguarding at the Office for Students, talked of linking safeguarding around sexual violence and mental health into university Access and Participation Plans, and making funding dependent on adequate provision for victim-survivors in universities.

The Women and Equalities Committee report on sexual harassment of women and girls in public places (2018) took this further, stating “The government should put in place legal obligations that mirror provisions in the US to link state funding with a requirement to prohibit sex discrimination and sexual harassment, and to collect and publish data on the effectiveness of institutional policies”.

While the above mentioned studies begin to shed light on the problem of gender-based violence in universities, and we support these most recent proposals, there remains overarching, fundamental gaps:

  1. Existing studies should be supplemented with a national study that: a) uses the most robust methodology, including random sampling, b) includes both staff and student victimisation, and c) incorporates domestic as well as sexual abuse.
  2. University prevention and response ‘plans’ remain ad hoc and piecemeal, primarily because universities remain relatively unaffected if they do not respond. This must be addressed at a structural level either as a statutory or mandatory
  3. At an institutional level, Universities must be guided to develop strategic responses to GBV based on evidence.
  4. An evidence based framework should be constructed for the specific context of UK universities, enabling such a comprehensive and cohesive strategic responses

Addressing the above will help to prevent the proliferation of studies that are of insufficient quality, and the development of responses with no strategic vision or little evidence base.

The Office of Students and the Home Office need to work together with Universities UK, universities, students’ unions, victim-survivors’ services, victim-survivors themselves, the criminal justice system, and academics with expertise in the field, to develop robust evidence-based responses to gender-based violence at university.

This blog was first published on the University of Bath IPR blog on 2nd May 2019 and was written with Dr Tina Skinner, Senior Lecturer in the Department of Social and Policy Sciences at the University of Bath. Dr Cassandra Jones,Postdoctorate Research Fellow in Law at the University of Exeter. Dr Rachel Fenton, Senior Lecturer in the Law School at the University of Exeter. Dr Olivia Smith, Senior Lecturer in Criminology at Anglia Ruskin University and Janet Keliher, a PhD Candidate at the University of Exeter. 

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How should we measure living standards in the UK?

Dr Demi Patsios, Senior Lecturer in the Centre for Research in Health and Social Care, discusses findings from a recent Nuffield Foundation project that examines the importance of using multidimensional indicators to improve the measurement of living standards.

Living standards in the United Kingdom are typically measured using household income or expenditure. Past research focuses on how they have changed over time, the extent to which there are in inequalities within different groups, and the impact of the recession on living standards Subjective indicators such as the personal evaluation of life circumstances, have however often been neglected or dismissed in social policy research as unreliable.

There has been little research that combines monetary and non-monetary indicators to inform living standards in the UK, both objectively and subjectively measured, for different household compositions and family types. Combining information on material and social living standards with how people feel about different aspects of their lives provide both a fuller picture on how different family types are faring in society and a broader picture of well-being, which can be used by policymakers to improve welfare and redress inequalities.

Our project The distribution and dynamics of economic and social well-being in the UK used data from three UK national surveys

  • Poverty and Social Exclusion Survey (PSE) 2012
  • Family Resources Survey (FRS) 2006/7 – 2016/16
  • UK Household Longitudinal Study – “Understanding Society” (USoc) 2009-11 – 14-16

In our research, living standards are defined as the total of individual/family welfare using both objective and subjective indicators of individual/family welfare, which fall under three broad domains: ‘What We Have, ‘What We Do’ and ‘Where We Live’. This conceptual framework was originally applied to the 2012 Poverty and Social Exclusion survey (PSE2012) data

What We Have

  1. Economic resources
  2. Material good
  3. Financial situation
  4. Personal and social resources
  5. Physical and mental health

What We Do

  1. Paid and unpaid work
  2. Social and political participation
  3. Social relations and integration

Where We Live

  1. Housing and accommodation
  2. Local area/neighbourhood
  3. Local services

Key project findings

  • The research confirms previous research that certain family life-course types, e.g. single adults of working age and single parents, had been affected most (monetarily and non-monetarily) by the economic downturn and subsequent recovery.
  • The same family life-course type differences and trends across the recessionary period are found in both objective and subjective indicators of resources (e.g. income, financial situation and mental health).
  • The analysis showed the importance of the nature of the measures and indicators used when trying to establish changes in trends in both objective and subjective indicators and the relationship between them over time.
  • The associations between objective and subjective indicators of economic resources are most closely aligned when individual measures or indicators of living standards are highly congruent in both measurement and operationalisation.
  • The findings also confirmed the importance of income as a key resource in living standards and the scientific validity of material deprivation items used in PSE, FRS and USoc surveys.
  • Satisfaction with income, satisfaction with financial situation, and satisfaction with life can be used as valid and reliable subjective indicators of living standards and how they change over time.

So why use subjective indicators of living standards?

Our research shows that a small set of subjective indicators (satisfaction with income, satisfaction with financial situation, and satisfaction with life) can be used to monitor changes in living standards over time and between different household and family types.

Subjective indicators can corroborate objective indicators such as income and material deprivation, which are not collected consistently across surveys or over time. These could be useful for smaller charitable and voluntary organisations working with individuals and families who do not have the capacity to collect in-depth survey data on income/resources.

Subjective indicators can help track changes in living standards across time and across family life-course types because their variation is explained mostly by what people have rather than who they are, where they live and what they do. By going beyond objective indicators of resources, we can capture a fuller and more nuanced picture of living standards in the in order to identify groups (specifically, single adults of working age and single parents) that require further policy attention (monetary and non-monetary), particularly during periods of economic downturn.

Find out more about the project.

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International Women’s Day 2019

Dr Emma Williamson discusses the current political and societal landscape regarding gender equality and how the Centre for Gender Violence Research continues to fight for justice for the victims of domestic violence.

The last year has been a mixed one for women’s rights.  The consequence of the Trump election has seen many of the hard-fought rights for women being reversed in the US, from challenges to women’s reproductive rights – access to contraception and abortion – to changes to the definitions of domestic and sexual violence.  These latter changes make it difficult for victims of psychological abuse and manipulative coercive control to get justice and support.

Globally, political and social shifts to the right through nationalist political parties also mean that women’s rights have been challenged from Hungary, where women’s studies centres have been closed, to the decriminalisation of domestic violence in Russia.

Alongside these challenges we have also seen the development of the #MeToo movement which has changed the social landscape of how we talk about abuse, and how we respond.  This movement is not a magic bullet however, we need to both prevent abuse happening as well as responding appropriately when people disclose it.  We still have a long way to go on both fronts.

Closer to home, many of the research projects from the Centre for Gender and Violence Research have come to fruition.  The Justice project ended officially in May last year and we continue to disseminate the findings through our partnerships.  Several academic papers are in press looking at faith-based responses to abuse, police responses, issues with protection orders, child sexual abuse, sex with third parties, as well as methods papers and one looking at the secondary trauma impact of this type of work on researchers.  We have a London based event in May to further disseminate this work, and we are working with Research in Practice to offer training to social care practitioners across England and Wales over coming months.  This training is based on the findings from the Justice and DRIVE projects.

This year saw the publication of the second annual report from DRIVE.  This project has been evaluating an innovative approach to disrupting the behaviour of high-risk domestic abuse perpetrators using multi-agency intervention.  The findings so far are positive and show that using this approach (enshrined in the Istanbul Convention) has had positive outcomes for the safety of victims/survivors, ensuring a robust response from the criminal justice system.

In December we held the final event for our Global Challenges Research fund project looking at gender and displacement in the UK and Iraqi Kurdistan.  We welcomed colleagues from Kurdistan, but the visa process was itself enlightening.  Twelve colleagues intended to travel to Bristol but five had their travel visas denied and as a result six decided not to apply (the process is extremely costly).  Most disturbing was the fact that unmarried women were deemed not to have strong enough social ties in their home country to mitigate their flight risk.  This was ironic given that our project was looking at the ways in which gender impacts on experiences of displacement!

Most recently Professor Marianne Hester with Professor Evan Stark (a previous Benjamin Meaker Fellow at the Centre) provided expert testimony to the successful Sally Challen appeal case.  This landmark appeal brings coercive control into focus as a potential mitigating factor in cases of murder/manslaughter where diminished responsibility is at stake.  That case will go to re-trial and we anticipate our work in this area featuring in that new trial.

Finally, the only non-Brexit item in the government legislative package this year has been the new Domestic Violence Bill.  We engaged with a wide range of activities relating to that consultation, including presenting to four Westminster events, and meeting directly with the Home Office to discuss the findings from the Justice Project – the most up to date data on protection orders and Criminal Justice System responses.  With the political uncertainty in Westminster at present we do not know when that Bill will be taken forward but whatever happens, the process of being able to share our findings with service providers and policy makers has been extremely rewarding, both to us and to those who took part in the research.

What all of this work shows us is that victims and survivors are still seeking justice for their experiences of gender based violence.  Having spent much of the last year immersed in survivors’ testimonies, we know how crucial victim’s rights (predominately women) are in protecting them and their families from abuse, but so too is the way that society and communities within society respond.  Victims and survivors want recognition, they want to be heard, and they want the perpetrator to be held to account.  These are simple messages which we can apply to our own individual, institutional, and social interactions when addressing issues of abuse.  They are also clear messages we can take forward, in the year which marks the centenary of some women’s suffrage, challenging both the individual and structural barriers which exist to prevent women from achieving their human rights.

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The Cox Report and Westminster: Better justice for ALL those bullied

Dr Lis Bates, Research Fellow within the Centre for Gender and Violence Research, responds to recommendations from the recent independent inquiry into harassment and bullying within Westminster.

In a blog post in April reflecting on the Newsnight exposure of a culture of bullying and harassment in the House of Commons, I asked:

“How can there be confidence in the system if those who are widely known to have transgressed are still allowed to get away scot-free? There needs to be proper investigation and justice for those who have already suffered. Recent criminal investigations have shown that, even in historic cases, perpetrators can and should be held to account for their actions. Should Parliament and the political parties not now do the same?”

The publication this week of Dame Laura Cox QC’s independent inquiry into Westminster culture has decisively answered: Yes, they should!

The recently-introduced Complaints and Grievance Scheme for parliament must be amended, she says, to allow complaints about ‘historical’ allegations. This would remove the arbitrary cut-off point of June 2017, before which allegations cannot currently be investigated because (the Commons leadership argued), to do so would be to judge Members under a different standards scheme to that in place at the time.

Not true, says Dame Laura: the standard was the same. That the complaints scheme governing that behaviour was deficient (as is widely agreed), does not mean that the minimum standard of behaviour was lower:

“There may not have been written policies in place expressly prohibiting such conduct, but it is obviously not the case that such conduct was acceptable among the Parliamentary Community in the past and will now be rendered unacceptable by the new Scheme.”

She goes further. Examining these older cases is vital to achieving culture change in Westminster and moving forward:

“some, at least, are extremely serious cases. Consigning them to oblivion is not at all consistent with restoring confidence, rebuilding trust and changing the culture. An important part of that culture change for the future should be examining, acknowledging and learning from the failures of the past.”

As well as this unequivocal recommendation that historic allegations be looked at, Cox calls for the establishment of a fully independent process to investigate and rule on claims of harassment and bullying.

Establishing independent oversight – and removing adjudication from the parliamentary Standards Committee, made up of MPs – is, she says, the only way to move beyond the perception and the reality that MPs are still ‘marking their own homework’.

She also is excoriating about the current parliamentary leadership, going so far as to say that she has doubts that change can happen while the current senior management are in post: “I find it difficult to envisage how the necessary changes can be successfully delivered, and the confidence of the staff restored, under the current senior House administration”.

In April’s post, I wrote that what victims of bullying, harassment and abuse want in terms of justice is: to be listened to, the perpetrator to be held accountable, and to be given voice and choice in what happens.

I know this to be true both from personal conversations in the last year with a number of friends and former colleagues in the House, but also from the research we do here in the Centre for Gender and Violence Research with victims/survivors of sexual and domestic abuse.

The Cox report underlines again how crucial these aspects are in achieving justice. The 200 individuals (70% of them serving employees) who spoke to the inquiry told her that the most important elements were “being listened to and taken seriously, having choice and a voice in the decision-making about their case”.

So often we hear of victims/survivors of abuse, harassment and bullying being blamed, discredited and undermined – Christine Blasey Ford just being the latest in a long line.

Dame Laura has changed this narrative. She has done more than just allow them to speak – she has explicitly weighed and vindicated their accounts. Bringing to bear her many years’ experience in forensic examination, she explicitly finds those who came forward to be credible, consistent and considered:

“Throughout this inquiry I have been struck by the professionalism, care and thoughtfulness of those who contributed. These were not people set on revenge or out to malign either individuals or the reputation of the House itself. Those present or former members of staff who came forward care very deeply that the place regarded as the heart of our democracy is failing to live up to the standards to be expected of any 21st century workplace.”

Through this inquiry, Cox has raised these voices up – listened with respect and taken them seriously. Those who spoke with her can feel that their accounts and their voices meaningfully have been heard. Let’s hope that parliament can now do the same.

Lis Bates is an ESRC Research Fellow in the School for Policy Studies, and a former clerk in the House of Commons.

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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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