Paul Williams describes how the UK's social care system often seems to obstruct the development of friendships for disabled people.
Author: Paul Williams
This article was first published by Community Living and is reproduced here with their kind permission.
In 1997 Hexagon, the then publishers of Community Living, produced a book called What Price Friendship?: Encouraging the Relationships of People with Learning Difficulties, by Michael Bayley. In it he describes the great need of people with learning difficulties for friendship, and how that can be achieved through community contacts with benefits for everyone involved.
Many others have written about the need for and benefits of friendship, for example Richardson and Ritchie (1989), Firth and Rapley (1990) and Mirfin-Veitch (2003). A major theme in Valuing People (Department of Health, 2001) was encouraging and supporting community participation and relationships.
The emphasis in these sources is on friendships with people outside services, but some writers have discussed the value of friendships between staff of services and those they support. Pockney (2006) describes how many people with learning difficulties look on their support staff as their friends and call them their friends, and this is reciprocated. Atkinson (1989), in a study of social work support to people leaving institutions, describes how a relationship of friendship developed between many of the people and their social workers, with great benefit to the support process.
Historically, many pioneer services were established through friendship and life-sharing relationships. For example Jean Itard in the story of ‘the wild boy of Aveyron’ in 1800, and Langdon Down in the founding of Normansfield in 1858, took people with learning difficulties into their own homes to teach and care for them.
The care organisations L’Arche and Camphill are renowned for the relationships of friendship, equality and life-sharing that they foster between people and their support workers. L’Arche was founded when two people with learning difficulties asked Jean Vanier “Will you be our friend?”, leading him to develop his philosophy that the negative experiences (which he calls ‘wounds’) of people with learning difficulties can be healed through friendship. Camphill is based on the philosophy of the 19th century educationalist Rudolph Steiner which also emphasises community membership through friendship and equality.
However, despite the clear need for and benefits of friendship for people with learning difficulties, an NHS survey in the 2000s found that 75% did not have any friends who did not have learning difficulties, 31% had no contact with friends at all, and 5% had no contact with either family or friends (NHS, 2005).
In view of this it is tragic that the fragile friendships of people vulnerable to isolation, friendlessness and loneliness should be damaged rather than supported by careless legislation or ill-considered policies. Here are some examples that I have recently come across:
A person in care of a local authority had been befriended by a member of the public who had visited her regularly and acted as her advocate for over twenty years. A social worker raised some concerns about the relationship and visits between the two people were stopped. Investigation of the concerns was heavily delayed and compounded by a decision that the person’s ability to consent to the friendship should be examined under the Mental Capacity Act. The concerns proved totally unfounded but it was over a year before visits between the two people were allowed to continue. Absolutely no priority was given to the need to preserve the friendship.
Another person had been befriended over a period of fifty years, with exchange of greetings cards and occasional visits. When a Christmas card was returned to the person’s friend as undeliverable he discovered the person’s place of residence had been closed. On enquiring to the local authority about the person’s new address he was told that the Data Protection Act prevented the authority even divulging whether they knew the person, let alone their new address. It also transpired that it was not the policy of the authority to keep records of people’s friends, nor to inform their friends of changes of address, the latter again being judged contrary to the Data Protection Act. The two friends of fifty years have still not succeeded in locating each other.
Both L’Arche and Camphill have been under pressure from social workers to adopt ‘professional standards’ that would prevent the sort of close friendship relationships between people and their support workers that their philosophies encourage. Both are resisting these demands, putting their services at risk of imposed closure (L’Arche Preston, 2013; Bateson, 2013).
I have come across these statements of ‘professional boundaries’ being imposed on service staff by local authorities:
Some services have been threatened with being reported to ‘safeguarding’ procedures, or even withdrawal of funding, if these things occur, even when well supervised and of long standing.
‘Safeguarding’ is nearly always interpreted as safeguarding from physical, financial or emotional abuse. The need is rarely acknowledged, or given any priority, to safeguard against isolation, loneliness and abandonment. Prevention of incidents like those at Winterbourne View is being approached with ever more stringent rules and inspections, instead of fostering relationships of friendship which would have had a natural preventive function.
Current trends are even more tragic in view of the natural understanding of friendship that many people with learning difficulties have. They have a desire to welcome people into their lives, show affection and share their lives with others. To respond with rejection in the name of ‘safeguarding’, data protection, assessing capacity to consent, or ‘boundaries’ is not only unnecessary but is cruel and, in my view, a form of abuse.
In this age of regulations and inflexible interpretations of legislation, what will it take to get back to prioritising an agenda of friendship, equal relationships and life-sharing? Community Living invites you to send in your stories of preserving friendships and resisting the forces that destroy friendships.
References
Atkinson, D. (1989) Someone to Turn To: The Social Worker’s Role. British Institute of Learning Disabilities.
Bateson, P. (2013) Choosing a life worth living. www.camphillfoundation.net/news-and-media/blogs
Bayley, M. (1997) What Price Friendship?: Encouraging the Relationships of People with Learning Difficulties. Hexagon Publishers.
Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. Stationery Office.
Firth, H. and Rapley, M. (1990) From Acquaintance to Friendship: Issues for People with Learning Disabilities. British Institute of Learning Disabilities.
L’Arche Preston (2013) Mutual relationships and friendships continue to be at the heart of L’Arche. www.larchepreston.org.uk/choose_friend.php
Mirfin-Veitch, B. (2003) Relationships and adults with an intellectual disability: review of the literature. donaldbeasley.org.nz/publications/NHC_Relations.pdf
NHS (2005) Adults with Learning Difficulties in England. Health and Social Care Information Centre.
Pockney, R. (2006) Friendship or Facilitation: People with Learning Disabilities and Their Paid Carers. www.socresonline.org.uk/11/3/pockney.html
Richardson, A. and Ritchie, J. (1989) Developing Friendships: Enabling People with Learning Difficulties to Make and Keep Friends. Policy Studies Institute.
The publisher is the Centre for Welfare Reform.
What Price Friendship? © Paul Williams 2014.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
community, intellectual disabilities, social care, Article
