This letter is in three parts. The first consists of quotes collected from Speaking Up groups around Somerset. The second is from the monthly meeting of the Management Committee of Somerset Advocacy for People with Learning Disabilities (consisting of representatives of adults with learning disabilities from around the County) at which they discussed the three questions asked by the Joint Committee on Human Rights. The third section is from the Trustees of Somerset Advocacy and describes what we consider to be a "test case" for the efficacy of advocacy.

1.  ISSUES/COMMENTS FROM SPEAKING UP GROUPS

  It's important: for us

—    to be able to say what we want to say;

—    to be listened to by staff, family, doctors, nurses, dentists;

—    to be spoken to as an adult;

—    be able to complain if something is wrong—food, someone calling me names;

—    to have relationships—boyfriend or girlfriend—it's up to us to be able to share things;

—    to kiss, hold hands, have sex, have babies;

—    to have privacy—our own bedroom—people must knock and be asked in;

—    to have a lock on the bathroom door; and

—    to have choices and to make choices to have a home.

"We're adults and grown-ups"

"Our carer says we can't kiss (me and my girlfriend). She says `we've got to draw the line somewhere'"

"I don't have much control of my money. My parents take control"

"My parents would say no to me having a boyfriend, I feel let down"

"I've been told boys mustn't kiss"

"People make fun of me in pubs"'

"I would like to take my boyfriend on holiday"

"It's up to us if we want a boyfriend or girlfriend"

"It's good to have a choice about where to live"

"My brother and sister in law don't like me going out on my own"

"Travelling on the bus is scary"

"Meeting friends can be difficult"

"Staff and parents do my money"

"There are lots of strangers on the bus"

"We should have privacy. People should knock and ask to come in (to bedroom)"

"We want to earn more money"

2.  MANAGEMENT COMMITTEE

  How easy is it for people with a learning disability to have a say in the decisions which affect them?

  It depends on the circumstances

  Difficult decisions are:

—    medical;

—    where someone puts him or her-self in danger;

—    where two decisions "clash";

—    where people have to give and take (compromise); and

—    where you live—because there may not be a lot of choice

  People need:

—    good information which they can understand;

—    good quality advocacy;

—    chances to try things out;

—    staff who are properly trained to support them; and

—    staff should be trained about human rights.

Howw easy is it for people with a learning disability to make a complaint about a service?

—    complaints information needs to be easily available and easy to understand;

—    it's hard to make a complaint about someone you know—they might take it out on you;

—    some people want to make a complaint to a man, some to a woman;

—    groups of people, like advocacy groups help give support;

—    sometimes people need support, but know who to complain to in the day centre or the outside world;

—    "I'd tell my dad first"; and

—    people in residential care find it harder to complain about people they know. They need more support.

What would help people with learning disabilities get their human right and any examples you have of when this has been done well.

  People with learning disabilities could be helped by:

  Good advocacy support

—  taking a friend for support;

—  having a telephone number to ring;

—  CAB;

—  well trained social workers/teachers/doctors;

—  Local Council.

  To support them in where they live, who they live with, meeting/ making friends, going to hospital/ doctor, work placements, college, day services and transport.

3.  TRUSTEES OF SOMERSET ADVOCACY

"The committee would particularly welcome views on the ability of people with learning disabilities to make their voices heard in decisions affecting them (including through advocacy services) and the efficacy of the relevant complaints mechanisms"

A is a woman of 28 years. For the last year she has been living in a respite facility run by the Social Services adult learning disabilities service while suitable accommodation has been sought. She was referred to the Advocacy service when her father did not approve of a place suggested by her social worker and tried to persuade her to go to live in one of a group of residential homes which he owns 250 miles away. An experienced independent advocacy worker met with A, who was adamant that she did not want to live in a home owned by her father—a view she has expressed consistently throughout. When she became very distressed by the situation, she stated that her father always got rid of people who were on her side and she would not give her permission for the advocate to discuss anything with him. As a result, her father became very aggressive towards the Advocacy service manager and subsequently towards the Trustees of the service. He clearly does not understand and will not accept his daughter's capacity and right to make her own decisions (consistently tested by the advocate against the criteria for capacity in the MCA). He also misunderstands, in spite of being informed, the role of advocacy in supporting his daughter and is threatening to take legal action. The trustees, who between them have decades of experience working with people who have learning disabilities, have stood firm, in the face of his vitriolic and abusive complaints. Social Services staff have found it very difficult to withstand his bullying behaviour—he is a wealthy man who believes he has the right to, control his daughter's life. He has tried, unsuccessfully, to take out an injunction to prevent the advocate from meeting with his daughter. The Consultant Psychiatrist has now decided that although A. has capacity to make this decision, she is being emotionally destabilised by the involvement of too many professionals and has asked all to withdraw, including her advocate, leaving her with the social worker, whom she does not want, and who has openly said that he can persuade her to go to the out of county provision which belongs to her father. A. has said that she wants her advocate to continue supporting her. The case continues—

  This case clearly demonstrates the difficulties which may be encountered by adults with learning disabilities who hold different views about what they want in their lives from heir parents. It also demonstrates the difficulties which advocacy services trying to give such people a voice may meet when challenged by parents who hold a different view about the capacity of their son or daughter to make their own decisions.

  In this case, advocacy itself has been rendered as powerless as the person it has tried to support.

  We consider that such difficulties are compounded by:

—    the lack of a recognised advocacy qualification- advocates not being respected as professionals (currently being remedied);

—    a general misunderstanding about the nature of advocacy- often thought to be a sort of arbitration, adjudication or mediation rather than a means of giving a person an independent voice; and

—    the fact that many advocacy services are funded wholly or in part by statutory service providers which may lead to a conflict of interests.

Funding of Advocacy Services

  The method for funding advocacy is an area that merits careful consideration by the Joint Committee. At present this Advocacy service is at the whim of the Local Authority which-funds it and, further, the funding is not ring-fenced. Uncertainty about the amount and continuity of funding is detrimental to the service's expansion as well as its existence and detracts from the overall purpose of the service; furthermore, it can result in less access to the service by people with learning disabilities who need to have their human rights supported and protected to the fullest extent.

  Advocacy services have a vital role in the lives of those who have learning disabilities. They need to be financially viable and sustainable with scope for expansion, but also, the user needs to have confidence that the service will survive and not be at risk because its future funding may be jeopardised by financial cutbacks in either Central or Local Government funding (but especially the latter).

Jane E Jones

Chair of Trustees

21 May 2007