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Annex 5: Summary of questionnaire responses
A questionnaire asking about people's experiences of advocacy was completed by 58 people with learning disabilities, 4 people from local autism groups and 20 parents and carers.
Responses from people with learning disabilities in local areas
50 of those people with learning disabilities who responded to our survey said there had been times when they wanted to have someone help them ask for what they wanted.
The kinds of people they used to help them get what they wanted included support workers, parents and other family members, advocates and self-advocacy groups.
Issues where people with learning disabilities and families said they wanted some extra help to say what they wanted included:
- employment
- housing
- transport
- education
- moving from school and children's services to adult life and services
- health services
- social work services
- assistance with social integration and using ordinary community services
- access to services to support people with learning disabilities in their role as parents
- financial services
- police and community safety services.
Over half of those looking for independent advocacy were able to get it when they needed it. However, 17 people said they were unable to access advocacy services for a number of reasons including:
- there are not many workers
- long waiting lists
- sometimes people do not know advocacy is available
- transport can be a barrier
- there are less advocates in rural areas
Only half the people responding to the survey thought that staff in services understand about advocacy. Some people found that when they made a suggestion or asked for something the organisation or individual staff saw it as a compliant or criticism.
'It is not easy saying what you want to. Sometimes I am a bit worried about upsetting workers so it is really good to have someone else to help you.'
Many people found that staff who work in a wide range of services - including specialist learning disability services - had low expectations of what people can do and didn't expect that people with learning disabilities would have views.
Some staff seem to make their decision about what people needed on the basis of their experience or what other people said, and did not listen to people's views. Some people felt they had few opportunities to speak up for themselves, and therefore could not get information about plans for services.
'If I didn't come to the People First group I wouldn't know what was happening about the hospital closing. No one tells us [residents] anything.'
Responses from parents and carers
More than half of the parents and carers surveyed said there have been times when they wanted to have someone help them ask for what they wanted. The same number said there had been times when their relative needed access to advocacy.
As with the surveys answered by people with learning disabilities, only half of the parents and carers or their family member have been able to get independent advocacy. This was for similar reasons, ie. lack of advocacy provision and lack of knowledge about what is available.
Of those people who used an advocacy service, almost all thought the support they received had been good:
- 'I no longer felt alone.'
- 'She got to know him, took time with him, found ways to communicate, when everyone else tried to decide his future without knowing him or what he wanted.'
- 'They have provided tremendous support by giving advice, attending interviews, travel to and from work and attending his work placements.'
Some parents expressed concern that advocacy service is often not available for people under 18.
Responses from people in local autism groups
The responses from people in local autism groups gave a different picture to those from people with learning disabilities and their families.
All of the people from local autism groups who were surveyed said there were times when they wanted help asking for what they wanted, yet all had been unable to get independent advocacy.
None of those surveyed felt that advocacy projects understand the needs of people with autism. One person commented that advocacy would make a big difference to their life - they just need a suitable service.
Some people found that because their disability is not visible other people were not aware of it - this is a problem for many people who have an autism spectrum disorder.
What difference has advocacy made to people's lives?
- 'I can speak about everything in safety. I have more confidence and a sense I am not alone.'
- 'It helped me get what I wanted.'
- 'It gives you a greater voice to make a real difference and make better choices.'
- 'I didn't feel so angry and it was easier to speak to the workers.'
- 'Our son and daughter are getting more help and are treated better.'
- 'We have more time to have quality time as a family without having to worry about dealing with numerous forms, red tape and official departments.'
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