This article appeared on page 45 of the 'Community Care' magazine, under the title 'Going off campus':
By 2010 the several thousand people with learning difficulties in NHS campuses should have moved into the community. Amy Taylor reports on the obstacles en route
Picture this. Over 20 years ago, you were forced to move away from your local area and had no choice about who you moved in with.
Now, you are legally classified as an NHS in-patient although you are not sick. As a result, you have no right to benefits and all your needs, aside from food and a roof over your head, must be funded from hospital pocket money of less than £20 a week.
It?s Saturday, and you would like to go into town but your accommodation is too far away and you are unable to move closer.
This is the situation faced by some 2,700 people with learning difficulties living in National Health Service residential campuses … today. As well as having few rights, research has shown that people living in campuses also experience less choice than people living in homes in the community, have fewer things to do during the day and have fewer chances to make new friends.
Until 18 months ago, the government?s main focus was on closing long-stay hospitals, where people with learning difficulties also lived, but since most hospitals have closed it has asked professionals to focus their attention on moving all residents out of campuses and has set a deadline of 2010.
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David Congdon, head of campaigns and policy at learning difficulties charity Mencap, says that a … barrier is campus staff?s fears about where they will be redeployed as they are protected from losing their jobs by Tupe outsourcing regulations. He also argues that it is not always proper for them to follow former residents as community-based housing requires staff with “a different set of values” based on promoting independence rather than control.
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Concerns from families about the suitability of community housing for their relatives can be another barrier. Carmichael says that this is understandable given the length of time some people have been living in campuses ? in some cases between 20-30 years ? and says work needs to be done with families to reassure them that the move will be a positive one.
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Janjua says that the 2010 target must be met and that doing so should be made a “national priority” with the closures of campuses already overdue. “People with a learning difficulty are not ill. No one should be placed in a hospital unless they have health care needs.
A hospital is not a home,” she concludes.
(Community Care, 2008)Putting children with special needs in mainstream schools can lead to unhappiness, writes Robin Jackson.
Jenny Morris? argument that residential special schooling is educationally, socially and ethically undesirable (Community Care, April 11) ignores the fact that there are families with children with special needs which are forced into self-imposed isolation. This is through fear that their children will be bullied and tormented by other children or that they will be verbally abused by neighbours.
Parents recognise this kind of isolation for what it is ? enforced imprisonment both for their child and themselves. By using the term “imprisonment” parents are selecting a word which precisely mirrors reality, for prejudice, rejection and hostility can combine to create a barrier as real and enduring as a prison wall.
A family has to be extraordinarily resilient and resourceful to withstand the pressures generated by this kind of exclusion. While there are some families who find that the presence of a child with special needs can act as a positive and integrative force, there are others who do not. The result of this is that all too frequently one finds marital disharmony and conflict, psychological breakdown of a parent (usually the mother) and acute difficulties in the management of other children.
Such families are asked to cope with degrees of stress about which most people can have little knowledge, experience or understanding. The insistence by some local authorities that parents of children with special needs should keep their children at home whatever the human cost smacks of blind subservience to principle. What kind of “normality” is it where children have to be confined within the four walls of their home, rarely integrating into their community for any kind of social or recreational activity, and living in a highly emotionally charged and psychologically corrosive family atmosphere?
The value of the residential special school does not rest simply on the advantages it confers on the child. It serves two purposes of equal importance and value: it seeks to meet the individual needs of the child and the collective needs of the family. It provides time for parents and siblings to re-establish links with the world outside the home and to return to a more “normal” family regime. What needs to be recognised is that the unquestioning pursuit of the principle of inclusion leads to significant casualties, not just children but whole families.
Robin Jackson is development and training co-ordinator for Camphill Scotland, which provide services for children, adults and older people with special care needs.
(Community Care, 2008)Rescare sent the following petition to the Prime Minister:
We the undersigned petition the Prime Minister to ensure the implementation of ‘Valuing People? and its vision of choice in full for people with learning disabilities and their families.
Details of petition
This includes (a) a full choice in Housing from ‘Valuing People?s? specified options which are ‘small scale ordinary housing, supported living and village and intentional communities as well as residential care. None of these should be ruled out?. (b) and the provision of a comprehensive appropriate and sustainable choice of Day Centres, Respite Care and Support Services within the community for those with learning disabilities and their families. This Petition expresses deep concern that many local authorities are denying such choice by refusing referals, funding or entry into all types of residential care; the closure of Day Centres, modifying eligibility criteria, and placing other obstacles contrary to ‘Valuing People?s? statement ‘The role of public services is to facilitate choice, not frustrate it?. The Petitioners therefore call upon the Government to reaffirm the principle of Choice, to impose a moratorium on Day Centre closures and further radical change, and to take effective steps to have its White Paper 'Valuing People' implemented in full.
(Rescare, 2008)Mencap opposes the development on hospital sites of self-contained village communities for people with a learning disability. We believe that the creation of such communities creates the risk of continuing the institutional routines and attitudes that existed in long-stay hospitals.
We believe that people with a learning disability should have the right to a home of their own, and be allowed to choose where they live and who they live with. They should have the opportunity to live in ordinary houses in ordinary streets.
(Mencap, 2008)Geoff Adams-Spink
BBC News website age and disability correspondent
The EU must take active steps so that disabled people no longer have to live in institutional care, a European conference has been told.
The conference to mark the International Day of Disabled People has been told that those who live in institutions are systematically denied their human rights.
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The president of the European Disability Forum (EDF), Yannis Vardakastanis, told the conference thousands of people were “living in the dark”.
“It's time they came out into the light and were able to participate as active European citizens,” he said.
Although reliable statistics on the levels of institutionalisation are hard to find, one delegate told the conference that 10% of French disabled people lived in institutional settings.
Mr Vardakastanis said there was no place in the European Union of tomorrow for such institutions.
The EDF says that many disabled people are too often denied the fundamental right to exercise choices over their own lives. The prevalence of institutions for the long-term care of disabled people is, according to Mr Vardakastanis, the result of society's failure to provide dignified alternatives. “What disabled persons ask for is something simple ? to live included in society,” he said.
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“Whenever a disabled person lives in a situation where their right to choice is being violated, and where decisions are taken over their head, they are institutionalised.” He called for action at every level ? the EU, national governments, local authorities and disabled people themselves ? to make sure that the situation changes. “The circle of segregation in which disabled people have been placed must be broken.”
And it is not just large, residential institutions that Mr Vardakastanis has in mind ? any situation where a disabled person is unable to exercise choice, families included, qualifies for the term.
At the route of the problem, he thinks, has been the tendency to segregate people in education, employment and housing.
(BBC News, 2008)CAMPHILL COMMUNITIES in England and Wales offer opportunities for people with learning disabilities, mental health problems and other special needs to live, learn and work with others of all abilities in an atmosphere of mutual care and respect.
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All are caring, life-sharing communities, where the contribution made to community life by each person is valued. Everyone is appreciated for who they are, for their unique personality and the special qualities they bring to community life.
The Camphill philosophy is that no matter what anyone?s outward disability may appear to be, the spirit ? the essential core that makes us all human ? always remains whole. So everyone is deserving of equal respect and opportunities in life so that all may be able to fulfill their potential.
Artistic and cultural themes run through the daily lives of all our communities where life is based on Christian values and inspired by the philosophy of Rudolf Steiner.
(Camphill, 2008)Adams-Spink, G. (2005) ‘EU “must end” institutional care?, BBC News [online], http://news.bbc.co.uk/1/hi/uk/4485076.stm (Accessed 9 April 2008).
Camphill (undated) ‘About Camphill in England and Wales? [online], www.camphill.org.uk/about/about-camphill-in-england-and-wales/ (Accessed 9 April 2008).
Enable Scotland, http://www.enable.org.uk/ (Accessed 22 May 2008).
Key Housing, Our Principles [online], http://www.keyhousing.org/html/principles.asp (Accessed 22 May 2008).
Key Housing, What Matters Most [online], http://www.keyhousing.org/html/principles/what.asp (Accessed 22 May 2008).
Jackson, R. (2002) ‘What is special about inclusion?? [online], Community Care, www.communitycare.co.uk/Articles/2002/06/20/36889/what-is-special-about-inclusion.html?key=YOUTH%20OR%20SERVICES (Accessed 9 April 2008).
Mencap (undated) ‘Village communities? [online], www.mencap.org.uk/html/press_office/ethical_statements.asp#20 (Accessed 9 April 2008).
Rescare (undated) ‘To deny none ? to support all!?, E-petition to the Prime Minister [online], http://www.rescare.org.uk/index_files/Page533.htm (Accessed 22 May 2008).
Taylor, A. (2006) ‘Going off campus?, Community Care, no. 1642, pp. 45?6; also available online at www.communitycare.co.uk/Articles/2006/09/21/55801/closing-campuses-for-people-with-learning-difficulties.html (Accessed 9 April 2008).
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