1.  USING HEALTH SERVICES, EDUCATION AND WELFARE BENEFITS

Health

  There is a mixed bag of experiences re access to and experience of primary and secondary healthcare. Good practice tends to lie with the individual healthcare professional and is largely down to whether they have received training and/or have had experience of learning disabilities. Some healthcare professionals find it difficult to communicate with people with a learning disability and do not use plain language, or other helpful aids (books without words, pictures, models, symbols/signs, etc) to help ensure information is as clearly presented as it could be.

  A large number of people with a learning disability are reliant on others (carers, staff, parents) to provide them with information about healthy eating/living. Inevitably, as a result people with a learning disability don't always get information they need, or are given choices about what they want to eat and how they wish to look after their bodies. In Swansea we have a Health Framework which sets out what organisations including statutory services have to do to promote health and well-being to people with a learning disability. Many providers of services have signed up to this, but it is more difficult to engage with smaller organisations and carers who care for just one or two individuals.

  Generally, there is more awareness of health in Swansea due to a successful and engaging Peer Health Advocacy Project which aims to increase people's understanding of health through role play, learning and discussions. This is a group lead by people with a learning disability and as well as learning about health they have also made excellent links with a broad section of healthcare professionals and provided much needed training to them on learning disabilities.

Education

  It is only during this past year that people with a learning disability are being asked about college provision and what they want provided. There is only limited funding. When people move and change services they might not have the same opportunity to carry on with their courses and have to stop going.

  Sometimes there is some segregation from other students, though this is getting better. Learning in an environment where there is diversity is best.

  Bullying exists.

  More could be done to make students more aware of learning disabilities.

Welfare Benefits

  People are very angry about benefit information and how it is presented in a confusing and difficult to understand manner with its jargon and difficult to understand words. People have to ask for help to understand benefit communications from their Care Managers (social workers and nurses), and it is this current system of providing complicated and confusing information which is very disabling and disempowering. People want more easy read information, less jargon, more/better access to Benefit Departments to help sort matters out, as well as for their staff to receive training about learning disabilities.

  People also told us it is also very difficult for them to have their own money. Their benefits often go into the family pot of money and they can't save for their future and for the things they want in life as their benefits are helping to keep the family out of poverty.

  People with a learning disability who are more able and want to work for a certain number of hours each week are also unhappy as their benefits do not allow them to earn more than "therapeutic earnings". It is also very difficult having to complete new forms when a new job doesn't work out and they have to start again. This makes people feel anxious about whether they will get the same benefits they were entitled to before. Some people give up trying to change things as they think it might not work out and they'll be worse off.

2.  PERSONAL RELATIONSHIPS

  Some people get better support than others to make new relationships and to continue with their current ones. Very often whether the person is supported well will rest with their individual Care Manager. Some will go the extra mile and do their best to support the person with a learning disability live the sort of life they want to live, but others, many of whom have massive case loads are not able to give those they care manage the sort of support they need.

  Very often parents are involved in care management discussions about the person with a learning disabilities future and very often they will have a different view to their son or daughter. Some of these parents are very protective, some for good reason, but not all. Parents also need some support to enable them to start letting go and to help them empower and support their loved one to go on and develop the sorts of relationships they want and need. As one person put it: "I want to move on—but my family are coming in the middle".

  It is very difficult for people with a learning disability to see others whom they know very well and who have similar needs to their own being better encouraged and supported by staff in day services to maintain or start new relationships.

  Only a minority of people have access to personal relationships courses. There are a few more staff being trained to deliver this now, but there is a shortage of trainers (Care Managers) as they also have their own case loads and time is very precious. Up until only a few days ago there was no information available to people with a learning disability telling them this course was available. They were wholly reliant on a care manager or day service staff mentioning it: and if they didn't know it was there they couldn't ask for it.

  Forming gay relationships are even more difficult for some people with a learning disability. Additional health risks are also being taken because people do not have access to/or necessarily know they can take control of their own protection.

  Several people in our group also talked about their own plans for the future and how they want to form a deeper relationship with their loved one, marry them, move into their own home and maybe have children together. The difficulty is having enough independent money to save up for an engagement ring and a marriage when you only have a few pounds a week as your benefits are supporting an entire family. Some people have a very bleak outlook on their future as there are not that many people with a learning disability married and acting as role models for them.

3.  TAKING PART IN THE COMMUNITY

  Links with the local community are often made through day service staff, for example, a local gardening project that helps elderly people. There is also a good link with the "Discovery" project which builds links between learning disabled people and students in Swansea University. Families, carers and staff support service users with learning difficulties to access local shops, cafés and pubs; there are specific clubs for people with learning disabilities but there is not much integrated socialising. People are saying they would like to mix with a wider range of people and have volunteers to support them access the local community.

25 May 2007