Category Archives: Learning disabilities

Liberty, social care detention and the law of institutions

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Stephen Martineau, Research Fellow at the NIHR Policy Research Unit in Health and Social Care Workforce at King’s College London, reviews Deprivation of Liberty in the Shadows of the Institution by Lucy Series (University of Bristol). Page numbers in brackets refer to the book, which was published in March 2022 (and is available for free). (2,642 words)

Introduction

One of the more familiar stories from recent UK history about the lives of people with longstanding serious mental illness or intellectual or cognitive disabilities is their move from large-scale institutional accommodation to living arrangements beyond the walls of such places. The extent of this ostensible deinstitutionalization is illustrated by the decline in hospital beds for ‘mental illness’, ‘geriatric’ patients and people with intellectual/learning disabilities—from over 200,000 in 1955 to under 20,000 in 2020 (Series, 2022: p.53). Much of this shift was to do with the closing of survivals of the Victorian era (which started out being called asylums, subsequently renamed mental hospitals) that took place through the second half of the twentieth century.

As Lucy Series describes in her book, Deprivation of Liberty in the Shadows of the Institution, these newer smaller-scale living arrangements may take the form of ‘quasi-institutions’ (residential care and nursing homes) or ‘quasi-domestic’ arrangements (‘supported living’, ‘independent living’, sheltered housing), or indeed ordinary homes.

Series describes this development as a passage from a ‘carceral’ to a ‘post-carceral’ era (after Unsworth, 1991). But in making the physical move away from institutions, to what degree have some less tangible aspects of the old institutional life been carried over to those new living arrangements, as far as these individuals are concerned? To what extent, Series asks, are they still living in ‘the shadows of the institution’?

This question was brought sharply into focus in the UK Supreme Court case of Cheshire West, the litigation that forms the dramatic fulcrum of this book. The court’s approach meant that its definition of deprivation of liberty applied to a much wider array of living arrangements than had hitherto been the case, extending to private homes, where family members were the carers (or custodians?) of the person concerned. It is the socio-legal ramifications of this move (which Series views as transgressive) that are the main concern of the book. To put it briefly and in human-rights terms, in its approach to concerns about liberty in the area of social care detention—under article 5 of the European Convention on Human Rights—the court seemed to set up a clash with a set of questions belonging more under article 8 (respect for private and family life), to do with the distinction between institutions and homes.

This review is split into five short sections: 1. Social care detention. 2. The acid test. 3. Liberty. 4. Home. 5. Out of the shadows? Continue reading →

Supporting parents with learning disabilities – passing on practice experiences

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Dr Martin StevensDr Martin Stevens is Senior Research Fellow at the Social Care Workforce Research Unit. (1,037 words)

There is increasing interest in supporting parents with learning disabilities, as evidenced by the good turnout at the Social Care Workforce Research Unit’s most recent practice seminar on 24 June. Our seminar series focusing on learning disabilities covers a wide range of topics, but this one on parents with learning disabilities reflected the relevance of the subject to practitioners working in both adult and children’s services. Sandra Baum, the seminar presenter, estimated that most (two-thirds) child and family social workers have a parent with learning disabilities on their case loads. Dr  Baum is head of learning disabilities psychological services and associate clinical director (LD) at Oxleas NHS Foundation Trust.

Dr Sandra BaumIn addition to co-authoring many articles and key guidance books, Sandra (pictured right) has substantial practice experience. Her work involves assessments, which include IQ tests alongside functional assessment of Daily Living Skills. She acknowledged that there is a serious question about the usefulness of IQ tests in assessing parents’ suitability. If the IQ score is over 55 (as it often would be), Continue reading →

Understanding the meaning and context of good social care support for people with learning disabilities from minority ethnic groups

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Last week Dr Gemma Unwin spoke at the Learning Disability Workshop Series run by the Social Care Workforce Research Unit and Making Research Count here at King’s. Dr Unwin and her University of Birmingham colleagues have recently completed a project that involved talking to adults with learning disabilities from minority ethnic groups in order to investigate their experiences of using social care support services. Here she introduces the study and discusses the findings. (778 words)

What we did

Thirty-two adults with mild to moderate learning disabilities from different minority ethnic groups in the West Midlands were interviewed about their understanding of ‘support’, their level of involvement with and experiences of services, their views of the support they needed, and the support they received, and the ways in which this met their goals and priorities. Interviews were sensitive to the cultural context of people’s relationship with services, using a ‘Culturegram’ or talking tool developed to help participants talk about the cultural aspects of their identities in their everyday lives. Continue reading →

Towards a new national learning disability employment strategy

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Stephen MartineauStephen Martineau is a researcher at the Social Care Workforce Research Unit in the Policy Institute at King’s. (782 words)

There is a flurry of policy activity in the field of learning disabilities and employment at the moment. Last Wednesday’s Summit on the topic, hosted by the British Institute of Learning Disabilities (BILD) in Birmingham, followed close on the heels of a run of associated consultation events. Led by a Department for Work and Pensions (DWP) civil servant, with the Department of Health (DH) also in the room, the focus of the meeting was a new national learning disability employment strategy. This is to be in final draft form by November, with a set of four learning and sharing events to follow, and sign-off by Mark Harper, Minister for Disabled People, expected in January 2015. Other indications that the topic of learning disabilities is ‘hot’ in Whitehall and Westminster, as DWP’s Simon Francis asserted on the day, include: the recent appointment of a Special Educational Needs Tsar (Lee Scott MP); the revamp of the GOV.UK website for potential employers of people with learning disabilities; and, a commitment to put much more of the information in this domain into easy read format.

It is too early to say much about the new employment strategy for people with learning disabilities in detail. The talk is of opening up a new funding stream, but quite what shape this will take (and whether, for example, it will entail new pilots)—this isn’t being discussed openly yet. Continue reading →

A giant in the field of autism: Reflections in honour of the life of Dr. Lorna Wing

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Valerie D'Astous

Valerie D’Astous

It has been said that a better tomorrow is built based on the efforts, determination and resilience of leaders of the past. English psychiatrist and physician, Dr. Lorna Wing was such a leader. She was instrumental in carving a path and showing us the way to move forward in the research of autism and improving the quality of life for individuals with autism. The world wide autism research community has lost its matriarch with Dr. Wing’s death last Friday, 6 June at the age of 85.

Dr. Wing focused her career on autism after receiving the diagnosis for her only child in the late 1950s. She was instrumental in defining autism as a spectrum, identifying the triad of impairments in autism, coining the term Asperger’s syndrome and helping to establish the National Autistic Society. She has been witness to and an agent for change in the research of autism and the autism community since its early beginnings.

Autism was first described in 1943 by American psychiatrist Leo Kanner and in 1944 by Austrian paediatrician and medical professor, Hans Asperger. Autistic Spectrum Disorder is a complex neurological developmental disorder that affects the way a person communicates and relates to people and the environment. The term ‘autistic spectrum’ is often used because the condition varies from person to person and can range in form from mild to very severe. Very little knowledge and few services were available when Dr. Wing’s daughter was diagnosed. For over 50 years, Dr. Wing was instrumental in autism research and advocacy, expanding our knowledge and promoting services and support for people with autism and their families.

In honour of the devotion and accomplishments Dr. Wing achieved in the recognition and understanding of autism spectrum disorder and for all people living on the autism spectrum we must continue her momentum, persisting in making steps in autism research, supportive services and collectively working towards what we have yet to achieve.

Dr Lorna Wing OBE 1928-2014 remembered at The National Autistic Society

Valerie D’Astous is a PhD Candidate at the Institute of Gerontology, King’s College London. Her research study focuses on the health care and supportive needs of adults with an Autism Spectrum Disorder. Of particular concern for her is investigating how people with ASD are able to maintain their wellbeing following parental caregiving.

On World Autism Awareness Day

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Valerie D'Astous

Valerie D’Astous

Ten years ago, I was not aware of autism. Ten years ago, the adults with whom I now meet to discuss their social and health care services and needs, were struggling day to day with the challenges of autism. Most are still struggling today, only now I am aware of them. Conscious of their struggle, I cannot sit idly by. Today, 2 April is the seventh Annual World Autism Awareness Day. One day each year to raise awareness of what for a lifetime a person with autism confronts. Autism is a lifelong condition. This means that a child with social and/or behavioural challenges of autism becomes an adult with these same autism challenges. The adults with autism whom I have had the pleasure to meet are generally honest, helpful, polite and kind. Many are also vulnerable, fearful and nervous. They persevere against the odds and are often frustrated. Meeting these adults with autism and their family members has taught me more about autism than I could ever learn from a textbook or academic article. Their hopes and fears, strengths and weakness are imprinted in my thoughts and direct my actions for change. The greatest lessons learned and awareness acquired are through personal experiences. On this Autism Awareness Day, I urge you to take the opportunity to talk with and listen to someone with autism and/or their family member. What you will learn may change your life. Hopefully together with this knowledge and awareness we can become instruments for change, to create a safer, more secure and accepting environment for us all.

Valerie D’Astous is a PhD Candidate at the Institute of Gerontology, King’s College London. Her research study focuses on the health care and supportive needs of adults with an Autism Spectrum Disorder. Of particular concern for her is investigating how people with ASD are able to maintain their wellbeing following parental caregiving.