Improving social care models for disabled people and people with a learning disability in the UK
can be supported, and the resulting impact on outcomes. With each of these generations, reflections on the progression of models of care and the societal relationship with supporting those with disabilities are possible.
The last few hundred years have seen radical shifts in how social care services have supported disabled people and people with a learning disability. This shows the different ways in which the same type of conditions
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The Residential Care Model – 1980–2000 People called “mentally handicapped” or “people with a learning disability” xxvii . Increasing numbers of individuals supported in residential care homes in the community. Disability is seen through less of a medical lens, but often still institutional. These homes offered limited tailoring to an individual’s needs and tended to be separate from the main community xxviii . The King’s Fund launched their ‘An Ordinary Life’ campaign in 1980 – “Our goal is to see mentally handicapped people in the mainstream of life, living in ordinary streets, with the same range of choices as any citizen, and mixing as equals with the other, and mostly not handicapped members of their community.” xxix 1981 Education Act included that children should be educated in mainstream schools or classes wherever possible xxx . 1983 Mental Health Act revised, and issue of consent introduced xxxi . 1990 National Health Service and Community Care Act placed the principal responsibility for community-based care on local authorities. Care was to include a range of services and individual packages of care needed for people. Introduction of direct payments for disabled people to choose the services they wanted xxxii . In the late 1990s, the idea of community care for those with a learning disability or mental health illness provoked some anxiety among the public after a small number of incidents involving psychiatric patients were picked up by a largely unsympathetic press xxxiii . 4
The Asylum Model – 19th Century Disabled people called “lunatics” or “idiots”. Those with higher level needs were supported in asylums, prison-like institutions with high walls to prevent escapes, with little to no likelihood of leaving once admitted. 1886 Idiots Act – separated out the distinctions of “lunatics” (those largely with mental illness) and “idiots” (those with a learning disability) xiv . There were 120 new asylums in England and Wales by the end of the century housing more than 100,000 people xv . 1
The Medical and Hospital Model – 1950–1980 Disabled people called “Subnormal” or “Backward” or “Retard” xx . NHS took responsibility for hospital services in 1948, and the model of care became long-stay hospitals, which were often physically isolated institutions managing disability as an illness. There tended to be a poor quality of life for those being cared for, separate and isolated from communities xxi . By 1953, nearly half the National Health Service’s hospital beds were for ‘mental illness or mental defect’ xxii . 1958 Professor Jack Tizard’s ‘Brooklands Experiment’ showed that disabled children living in small houses in the community developed better than those who lived in hospitals xxiii . 1959 Mental Health Act cemented the move from Victorian asylums to conventional hospital wards xxiv . In 1976, the first UK ruling was made that involuntary sterilisation would ‘deprive [a woman] of a fundamental right to reproduce’ xxv . There were eight major hospital inquiries between 1969–79 in England into overcrowding, isolated and impoverished environments of care, poor staffing levels, and a lack of meaningful activity for patients xxvi . 3
The Community Model – 2000–now
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Introduction of Supported Living model (“At the centre of the model is the notion that people with a learning disability should be able to live in their own homes, as tenants or owners, with the support they receive tailored to their own circumstances and needs. Typically, somebody receiving a supported living service will live in their own house or flat, maybe sharing with one or two other people they have chosen to live with.”) xxxiv . 2001 ‘Valuing People’ was published. It was the first white paper about learning disabilities in 30 years. It was based on four key principles: rights, independence, choice, and inclusion xxxv . 2005 Mental Capacity Act: Vulnerable people have the right to make their own decisions if they have the capacity to do so xxxvi . 2010 Equality Act to provide law to tackle discrimination, including disability based xxxvii . 2011 Winterbourne View Hospital scandal: BBC Panorama programme in May revealed widespread abuse by staff xxxviii . 2014 Care Act: aims to give greater control and influence to those in need of support xxxix . Transforming Care Programme – Homes not Hospitals – to reduce the number of people with a learning disability and autistic people in a mental health inpatient setting and to develop community alternatives to inpatient care xl .
The Eugenics Movement and National Health Service – 1900–1950
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Disabled people called “Moral Defective”, “Moral Imbecile”, or “Feeble Minded” xvi . Eugenics movement prevalent, and in 1934, the Brock Report (a British parliamentary report) advocated for the involuntary sterilisation of disabled people. Eugenics largely discredited after World War II, but eugenicist agenda still evident in local and national policies xvii . Two million newly disabled British servicemen returned from the First World War which led to advancements in prosthetics, employment protection, accommodation, and recognition of some mental illness xviii . 1944 Education Act determined many disabled young people ‘ineducable’, and to remain under hospital stays. In parallel, there was a rise in special schools and some amalgamation into mainstream school provisions xix .
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