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Listen
Chapter 1: Why having a voice matters
Introduction
Many people with learning disabilities and autism spectrum disorders find that some services do not treat them with respect, and do not listen to them. They are frequently not valued and not allowed to make the sort of choices that others take for granted. They end up being disadvantaged and discriminated against.
The reasons given during our consultation included:
- We often lack confidence to speak up and think we are not allowed to express an opinion
- We are not used to making choices
- Often we do not have the information to make choices
- We can easily be very intimidated in many of the situations where we would like to say what we want
- Some people do not give people with learning disabilities or autism spectrum disorders time to say what we want to
- People often have problems understanding us
- Some people with autism spectrum disorders have difficulties in communication, social interaction and understanding which makes it hard for us to say what we want
There are several things which can help people to have a voice.
- Other people need to listen and encourage someone to speak up for themselves. People need to have enough time to work out what they want to say and communicate in the way they find comfortable. They also need other people to treat what they say with respect. Sometimes training can help, but the people who contributed to this report were clear that people's attitudes and values are the starting points.
- Friends and family can stand with someone - encourage the person to speak up for themselves and offer moral and practical support if the person wants this. This is what many friends and relatives do for each other. We heard about many situations where someone's mum or friend had helped them speak up and get the opportunities or services they wanted.
- People need to have access to independent advocacy when they want to use this form of support. This might be because this person prefers not to involve a friend or relative, or because the person wants to keep this matter private, or because the matter is complicated and they want to have someone with particular experience standing beside them.
- Joining with other people who share your situation or experience can help. You can encourage and learn from each other. You can also join together to have a stronger collective voice.
All of these forms of support are important. In this report we are looking in detail at independent advocacy, including collective or group advocacy. This is because this support is particularly important for people who have the greatest difficulty speaking for themselves.
Advocacy is important for everyone. Another Sub Group has been looking at the needs of children who have learning disabilities or autism. Children and young people need to have access to advocacy that reflects their situation, and the suggestions we make in this report apply to them as much as to adults.
Sometimes family carers also need some help in having their say. This can be when they are trying to get the right services and opportunities for the person they care about. During the consultation for this report, carers told us about times when they were so upset or angry they found it difficult to explain what was needed. Carers also told us about how they sometimes needed help to get the support that they required for themselves. They said that what was needed was for other people to listen. They were also looking for advocacy for them as individuals, for the family as a whole, and for the person with the disability.
Why advocacy matters
In this chapter, the Vice Chairperson of People First Scotland describes why advocacy is important to people with learning disabilities.
Many people with learning disabilities experience times when they feel they are not being treated in the right way:
- People get bossed around
- They get told what to do
- They sometimes get abused
Things happen to them that they do not know about and would not agree to if they did know about them.
There are different kinds of advocacy which all try to make sure that people get treated right.
Who are People First?
People First is about self-advocacy. People First is run by its members and there are about 50 groups across Scotland. Most of them are based in local communities, some are in long-stay hospitals and a few are women-only groups.
The local members elect Directors to the Board of People First, which manages the organisation, staff and makes decisions about national policy.
People First has tried to get things changed in different ways, recognising always that real change needs to happen inside people themselves, as well as in the way that people are seen and treated by others. All of this means that sometimes policies and services need to change.
It has been our experience at People First that all of our members can grow and develop into different people.
- People who can do things.
- People who have rights.
- People who are worth spending time with and being loved.
We use the staff and volunteer advisers to support people in speaking up for themselves and for other people.
This has, over the years, led us to try to promote the voice of people with learning disabilities.
We campaign on things like hate crime and hospitals closing. All of which is achieved by meeting with Ministers in the Parliament; writing letters; producing petitions and speaking at meetings, universities and colleges; playing a part in health, social work and care inspections. Our work extends across Scotland but also on a European and world stage.
We would not want to say that People First is better than other kinds of advocacy. We also work with independent advocacy organisations who advocate for individuals.
Most of the time when one of our members has a big problem, we look for another advocacy organisation to work with them. Unfortunately all too often we are told that due to resources there is not one available in the area or, if there is, there is a long waiting list.
We would want to say that People First is important. It makes a big difference in the lives of our members. We think it helps people believe in themselves more. We think it helps other people look in a different way at people with learning disabilities.
One of the best things about People First is that it helps our members feel strong enough to speak about their life for the first time. It sometimes takes a long time before people understand that what's happening in their lives is not right. A lot of the time, that means the person could use an advocate to help them change things or stop some abuse happening. That makes advocacy, whether undertaken by us or by others, all the more important.
Why having a voice is important for people with autism spectrum disorders
People with autism spectrum disorders have impairments in social interaction, communication and imagination. As a communication disorder, some people will need help to express what they want whether it be what they want for dinner to accessing appropriate services.
Asperger's syndrome is part of the autism spectrum, but people with Asperger's syndrome tend to have average or above IQ levels and appear to have good language skills which can mask their difficulties they may have in understanding a situation and communicating what they really want. As a result, some advocacy services may feel they don't need support in expressing themselves because they appear too able and articulate.
Independent advocacy organisations need to be aware of the various aspects of autism spectrum disorders in order to help all those on the spectrum who require support.
As part of implementing the Public Health Institute for Scotland needs assessment report for autism spectrum disorders, local agencies are being asked to ensure frontline staff have training in working with people with autism spectrum disorders.
A report found that those that accessed independent advocacy services had positive experiences e.g. 'Yes I'm very happy with my advocate, I only wish I knew her all those years ago.'1
However, there were others in the report who found it difficult accessing an independent advocate. Only 11% of carers said that the adult they cared for had ever used an independent advocate with 54% saying they were not aware of an independent advocacy organisation in their area that the person they care for could use. 2
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