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

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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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Crisis in care homes: how can we improve standards in the context of austerity?

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Liz Lloyd, Professor of Social Gerontology in the Centre for Health and Social Care discusses the factors behind deteriorating standards in care homes.

There is a crisis in British care homes, arising not merely from bad behaviour by staff members but from the economic and political context of the social care market.

There are currently close to half a million individual places (‘beds’) used by around 4% of the population aged 65+ and 17% of people aged 85+. Statistics vary somewhat, according to what is being measured, but we can be certain that although the number of older people in the population have risen, a smaller proportion of them live in a care home, that they are older on average when they first enter the home and have more complex, long-term illness that require more skilled assistance.

Older people are also increasingly likely to pay at least a part of their care home fees. According to Laing and Buisson’s 2012-2013 Care of Elderly People UK Market Survey, some 43.4% of older residents in the independent sector paid the full costs and a further 14% received partial council support and topped up their fees. The majority therefore still rely wholly or partially on public resources but this proportion is falling.

Running parallel to these changes is the rise in private ownership of care homes and payment of fees. Over three decades, the proportion of places in local authority run care homes in the UK has dropped while the proportion in the private, for-profit, sector has risen so it now has a 75% share of all places. The voluntary, not-for-profit, sector share has been more stable but is falling slightly. The current crisis involves increasing levels of provider failure and exit from the care home market. Several big providers are deeply in debt, raising fears of a major collapse like that of Southern Cross in 2008. Owners point to rising costs as a consequence of the introduction of the national living wage and falling profits because fees paid by local councils have not risen in line with increased costs. The consequences for providers is an unsustainable business model.

The consequences for older people who need residential care are evident in delayed discharges and hospital waiting lists, a point illustrated perfectly in the case of Mrs Iris Sibley, who remained in the Bristol Royal Infirmary for six months while her family sought a care home place. For residents and their families the insecurity associated with provider failure means added anxiety and stress. Add to this the associated problem of worsening standards, which the Care Quality Commission fears will grow in the absence of major reform. Mrs Sibley’s son described how one place she was offered was so bad that he ‘wouldn’t put a sick dog in there’.

Not all older residents experience the same thing, of course. According to Norman Lamb MP, former Health Minister, the market has come to benefit older people with enough money to pay for their own care while disadvantaging those who rely on state support. Care homes where all or most residents pay their own fees are more secure than those that rely mostly on the local authority payments and are more able to absorb the additional cost of the national living wage. We might question why anyone would argue against a decent level of pay for the people who care for us when we are sick and disabled, but the dominant theme in social care for older people is that it should be as cheap as possible – hence, high numbers of migrant workers in the care home sector.
In fact, debates about care homes focus overwhelmingly on keeping costs down and agreeing who should pay. Should it be individuals (during their lifetime or after their deaths), their families or the public in general? Health and social care are frequently portrayed as unaffordable in the context of the ageing of the baby boomer generation.

I declare an interest here, being a baby boomer, but take issue with such a simplistic argument. Demographic trends have an impact on demand for care, for sure, but there is evidently a wider set of factors at play. Indeed it is arguable that demographic trends provide a useful rationale for cuts to public spending that would be made anyway. Policy-makers have placed themselves in a bind as cuts to public spending have impacted on private sector profits, proposals to recoup the cost of care from older people’s estates after death are met with outrage in the press, as are stories like that of Mrs Sibley.

Evidence on what makes a care home a good place to live and work is abundant. Higher standards of care are usually reflected in higher levels of staffing, more skilled workers and a culture of person-centred care that attends to the whole range of an individual’s needs, not merely to their basic physical requirements. A culture of ‘person-centred care’ promotes a sense of belonging and security and enables residents to maximise their capacities, enjoy new experiences and take risks. Care homes are likely to remain a part of the care system, despite their reputation, so we need to focus on standards. A sizeable number of us who will live in a care home at some stage of our lives, or have a close relative who does. But more importantly, care homes are inextricably linked with other parts of the care system so it is in our interests to think about standards in care homes as a policy issue that affects us all.

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Letting the Future In

Tricia Jessiman, Research Associate in the School for Policy Studies, reports on a study of therapeutic support for children affected by sexual abuse.

It has at times felt difficult to keep up with overlapping high profile Child Sexual Abuse (CSA) scandals dominating the UK headlines in recent years. Jimmy Saville, Operation Yewtree, Rotherham, the ‘Westminster Paedophile Ring’ – the headlines have kept coming in. There has been rather less media coverage on the impact of sexual abuse on those children who experience it. The academic literature tells us that CSA is associated with a range of psychological and behavioural symptoms in both childhood and adulthood including post-traumatic stress (PTSD), depression, alcohol and drug misuse, suicide, and self-harming behaviour. Children who have been sexually abused need help – but it may not be readily available. The NSPCC’s current campaign, It’s Time, seeks to highlight the scarcity of therapeutic support in the UK for children who have experienced abuse.

Even were it more widely available, it is unclear ‘what works’. Research on the effectiveness of therapeutic support for CSA is limited. Colleagues in the School for Policy Studies have published two Cochrane systematic reviews of the effectiveness of therapeutic interventions. Geraldine McDonald led a review of cognitive-behavioural interventions (CBT), and concluded that “…CBT may have a positive impact on the sequelae of child sexual abuse, although most results were not statistically significant.” Most of the 10 studies in the review were American, and the most recent was published in 2004. William Turner’s review of psychoanalytic/psychodynamic psychotherapy for CSA failed to find a single study that met the inclusion criteria.

Hence we are delighted to see the publication today of our evaluation of ‘Letting the Future In’ (LTFI), a therapeutic service for children affected by sexual abuse. Led by Professor John Carpenter, the study was conducted with colleagues at Durham University and is the first impact evaluation of a therapeutic service for CSA published in over a decade. It’s also a rare example of the use of a randomised control trial in social work research with children and families in the UK (and we certainly learned just how much time, effort and goodwill is required to conduct one).

LTFI was developed by the NSPCC and at the time of the study delivered across 20 service centres in England, Wales and Northern Ireland. It is available to children aged between four and 17 without a diagnosed learning difficulty who have been affected by sexual abuse. Children are offered up to four therapeutic assessment sessions followed by up to 20 intervention sessions (extended up to 30 if necessary) with a children’s services practitioner (CSP). CSPs delivering the intervention vary in their background, training and experience but most commonly are qualified social workers with additional training in therapeutic work with children. At the same time, the child’s safe carer (typically the non-abusing parent, but sometimes a grandparent or foster carer) is offered up to eight sessions to help them process the impact of discovering that their child was sexually abused, and to support the child in their recovery.

We conducted a randomised control trial (RCT) with waiting-list control of LTFI, as well as a process evaluation of its implementation by NSPCC teams, and qualitative case studies with 15 children and young people who received the intervention. A total of 242 children took part in the RCT, making it the largest trial of a CSA intervention ever conducted. Three quarters of them were girls and most had experienced contact sexual abuse – inappropriate touching or penetration. Unlike the high profile headlines would have us believe, the children in our study were not abused by strangers or celebrities. They were almost twice as likely to have been abused by someone in their family as by someone outside it and in four out of ten cases where the perpetrator was known, they were also a child under 18 years of age.

The study confirms that children who have experienced CSA need support. When they were referred to LTFI, over half of the children and young people over eight years old in our study reported ‘clinical’ level scores on a standardized measure of psychological and behavioural symptoms, rising to 70% when one or more ‘significant difficulties’ were included. Parents/carers reported ‘clinical’ or ‘significant difficulty’ level scores for nine out of ten younger children under eight. Many of the children in our sample had also experienced three or more other types of victimization, such as physical and verbal abuse at home and bullying by other children, in addition to sexual abuse.

Did receiving LTFI help? We won’t give too much away, because the findings of the study are published today and we want you to read them. In short, the impact evaluation revealed that LTFI had a significant effect on older children and young people (broadly speaking, those aged eight years and older) after six months. The report provides a detailed account of the service delivered, the evaluation design and results, as well as details of how much it costs to deliver LTFI. It also has a strong service-user element; our qualitative research with children and their families who had received the intervention revealed that they valued it hugely, in particular the bond or ‘alliance’ that developed between NSPCC practitioners and the children. One of the young people we spoke who had this to say about LTFI:
“If you’re in a really bad place like I was, they will definitely bring you out of it and you’ll see there’s so much more to life. It’s probably one of the best decisions I made to do LTFI. Before I met them I was really quiet, withdrawn, wouldn’t really talk to anybody. Now since finishing with them, I’m such a more positive, outgoing person and I have a lot of confidence. They did their job.”

This blog post is based on Carpenter, J., Jessiman, T., Patsios, D., Hackett, S. & Phillips, J. (2016) Letting the Future In: a therapeutic intervention for children affected by sexual abuse and their carers: An evaluation of impact and implementation. NSPCC
https://www.nspcc.org.uk/services-and-resources/research-and-resources/2016/letting-the-future-in-evaluation

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We need to help children in care treasure the objects that tell their life story

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Debbie Watson, Senior Lecturer in Childhood Studies at the School for Policy Studies has recently published a piece in the Guardian.

It is about the importance of mementoes, objects, and other articles which help to anchor adopted children emotionally and provide a connection to their past.

 

 

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Patricia Lucas explains why the School for Policy Studies is researching dental decay

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Data released by Public Health England on 30 September 2014 has shown what many interested in health in the early years know already.  Over 80,000 3-year-old children in England – about 12% – suffer from a completely preventable disease.  Dental decay is painful, the treatments are unpleasant, and decayed, missing and filled teeth affect appearance.  Oral disease can have very serious consequences: in Bristol alone 721 children aged 0-19 years (of whom 155 were under 5) were admitted hospital for extraction of decayed teeth in a one year period (2012/13).

Tooth decay is of importance for us in the School for Policy Studies because while rates have reduced dramatically since the 1970s, there remain important and significant inequalities.  Closer examination of

data suggests geographical and social disparities in oral health.  Children from more disadvantaged backgrounds are significantly more likely to have early tooth decay and to need teeth extracted under general anaesthetic.  In Bristol, while the rate of child dental decay was on a par with the UK average in 2008, the DMFT (decayed, missing, filled, in teeth) index for children in South Bristol, an area of high deprivation, is currently twice the city average.  Ashley and Lawrence Hill wards experience nearly three times as many dental fillings in under 5 years old, compared to neighbouring Bishopston and Redland wards.

The Public Health England (PHE) report points out that the most important cause of dental decay is sugar in diet, and the most important preventive action is fluoride (in toothpaste or water).  The response from PHE focuses on the former, but it is important not to ignore the latter, and to understand the policy context for this.  Despite clear evidence that very small amounts of fluoride in water supplies reduces dental decay, few water supplies are fluoridated in the UK.  Water supplies are a shared resource, and public and legislative barriers mean addition of fluoride seldom happens.  In the absence of this, use of fluoridated toothpaste and fluoride varnishes by dentists are the next line of defence.

One difficulty for local policy makers is that we don’t have good enough data on oral health in childhood.  The new PHE Survey is important, but sampled just 211 3 year olds in Bristol.  We need better local data to really understand what is happening to have a reliable estimate of the local rate, including how this varies between areas.

Our study, which is part of the BoNEE project, will improve our understanding of oral health inequalities among children in Bristol.  We will do this by looking at dental hospital records of who is attending for dental extractions, by understanding better what happens when children do visit the dentist, and by gathering parents views and experiences of oral health services in Bristol.

This project is in collaboration with colleagues at University Hospitals Bristol NHS Foundation Trust, the University of Bristol’s School of Oral and Dental Sciences, and Bristol City Council.

Patricia is Head of the Centre for Research in Health and Social Care in the School for Policy Studies at the University of Bristol.

 

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Supreme Court ruling defines deprivation of liberty

Leona McCalla, Teaching Fellow in SPS and mental health practitioner, discusses the implications of recent judgements on the deprivation of liberty.

On 19 March 2014 the Supreme Court finally gave its judgement in the cases of P v Cheshire West and Chester Council, P & Q v Surrey County Council (2014). These cases concern the criteria for judging when care and treatment for ‘mentally incapacitated people’ amounts to a deprivation of liberty.  P is an adult with Down’s syndrome and cerebral palsy, living in a registered care home setting; he has 24 hour care and support and requires physical intervention when he experiences agitation. P & Q (MIG and MEG) are sisters who became subject the care proceedings. MIG was placed in foster care and appeared settled there. She never attempted to leave, but would have been prevented from doing so if she tried. MEG was placed in a residential home for adolescents with learning disabilities and complex needs; she required occasional physical restraint and medication for the purpose of sedation.

The ruling found that P in the Cheshire case and P & Q were all deprived of their liberty. Lady Hale led the judgement and concluded that if a person is subject to continuous supervision and control, and they are not free to leave, then they are deprived of their liberty. This ruling has significant implications for Local Authorities who act as Supervisory Bodies in the Deprivation of Liberty Safeguards process, as it means that many people are likely to be unlawfully deprived of their liberty without safeguards in hospital settings, care homes and in supported living placements.

The Deprivation of Liberty Safeguards (DoLS) was implemented in 2009 as an amendment to the Mental Capacity Act 2005. The purpose of DoLS is to provide protection to people who lack capacity to make decisions about their care and treatment either in care home or hospital settings. The process involves independent professional assessments which are undertaken by a Mental Health Assessor, usually a Consultant Psychiatrist and a Best Interests Assessor (BIA) most likely to be a Social Worker or Mental Health Nurse. The BIA’s role is central to the process and involves assessing whether a person lacks capacity to decide on their care or treatment, deciding whether a person is deprived of their liberty, and deciding whether the DoL is in their best interests, necessary to prevent harm to them, and whether it is proportionate to the likelihood of that harm occurring. The Mental Health Assessor and BIA submit their assessments to a Local Authority Supervisory Body who ‘authorise’ the Deprivation of Liberty; in this way the DoL can be made compliant with Article 5 of the Human Rights Act 1998, the Right to Liberty.

Having worked as a Best Interests Assessor since the role’s inception, I have firsthand experience of the complexities of the work. One of the main challenges involved is deciding whether or not a person is actually being deprived of their liberty. The absence of a definition of what constitutes a deprivation of liberty in the Mental Capacity Act 2005 means that practice is guided by case law. Complexities have arisen because judges have not been entirely consistent in their interpretation of DoLS and therefore definitions of Deprivation of Liberty have evolved with each landmark judgement. Empirical studies such as that conducted in the School for Policy Studies (Carpenter, Langan, Patsios, & Jepson, 2013) have highlighted that BIAs have historically taken a range of factors (based on case law) into consideration when deciding if someone is deprived of their liberty. These include coercive staff behaviour, the resident’s level of objection to their care, the use of medication to reduce agitation, restriction of movement, and family unhappiness with the care.

The judgement handed down in the Supreme Court indicates that factors which have previously been the main considerations in deciding whether or not a person is deprived (objection, acquiescence and the purpose of the care and treatment) are not relevant. Lady Hale confirms that a simple definition should apply: If a person is subject to continuous supervision and control, and they are not free to leave, then they are deprived of their liberty.

This ruling provides clarity about what constitutes a DoL and, as a BIA, I welcome this. However, the judgement means that many more people will require a DoL authorisation.  Potentially anyone accommodated in a care home or hospital setting who is not free to leave and lacks capacity to make this decision will require assessment and authorisation. There are thousands of people living with a mental disorder, accommodated in secure care homes or on hospital wards, who previously would have not needed an assessment because they were compliant with their care and treatment, who will now need to be assessed.  Since the judgement on the 19th March I have consulted a number of BIA colleagues and we have all identified recent cases where our decision based on case law was that no deprivation was occurring, but under the ‘new definition’ a deprivation would have been judged to be occurring.

Similarly, the case of P&Q involved sisters living in foster care. The fact that P&Q were found to be deprived of their liberty sets a precedent. There could be an influx of cases for people residing in supported accommodation or from people receiving care in their own home (not covered under DoLS), if they are under continuous supervision and they are not free to leave. This has huge resource implications for public bodies and the Court of Protection and questions have been raised about how the system will cope.  

I wait with anticipation to see how Supervisory Bodies will respond. There are many questions to be answered: Will the new definition provide more safeguards for people living with mental disorder? Will reassessment of recent cases by required? How will training be provided to Managing Authorities to ensure that care staff are aware of the changes?  How will the system cope with the potential influx of referrals?

I look forward to lively debate over the coming weeks and months as we consider further how this judgment will impact on practice and whether it will provide better outcomes for the service users. If the Government act on the House of Lords Select Committees post legislative scrutiny of the Mental Capacity Act , which was published a week before the Supreme Court ruling, the Deprivation of Liberty Safeguards process will be replaced in due course . Until that time comes those of us involved in this field of practice will continue to practice in line with case law judgments, with the aim of safeguarding some of the most vulnerable people in our society. 

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