MONDAY 25 JUNE 2007

DAME JO WILLIAMS AND MR ANDREW LEE

  Q20  Earl of Onslow: To me, that means quality of service rather than quality of life.

  Dame Jo Williams: The point I am trying to make—and perhaps I am illustrating it badly—is that actually, for many people quality of life is about making choices for themselves and freedom to act. Andrew's point about risk aversion in some providers of services is one that I would absolutely support. So we need changes to the way in which the system is working. We are looking now, as I have suggested, at different ways of individuals receiving money to take control of their own lives. I would also want to say that we have concentrated on social care and health but actually, in terms of working, for instance, people with a learning disability are significantly disadvantaged and opportunities, working with employers, giving people information and support to get into employment—actually, the people I know that are working in my own organisation and elsewhere, I know that that changes their lives significantly. We need increased flexibility so that people may need support for a longer period of time as they move into the working environment, and the current regulations I do not think extend perhaps as long as some people with a learning disability may require to make the adjustment into work.

  Q21  Nia Griffith: If we could turn to the issues about independent living, what really are the main barriers to people with complex learning disabilities actually leading an independent life?

  Dame Jo Williams: I know people who do have complex needs who can be supported to live independently but it requires significant flexibility and a great deal of imagination for the right kind of support to be put together and it is very difficult for people themselves without good support to access quality housing services, make sure that the right kind of personal assistants are appointed for them, but there are some very good examples of this. My organisation works closely with a sister charity called Golden Lane Housing where people are themselves tenants of properties, that actually with support, even with complex needs, people can have a very significantly enhanced quality of life.

  Q22  Nia Griffith: What do you think actually makes a difference between people being able to do that and not? Is it to do with attitude and imagination of perhaps the powers that be?

  Dame Jo Williams: It is partly that and it is also about aspirations too. This is one of the issues that is perhaps outside the remit of your Committee but I do think that one of the things we need to see changing with time is through young people's education. Andrew made the point that concentrating on the difficulty or the disability actually denies people those hopes and aspirations. Concentrating on ability and people's gifts opens doors for them and I think that is one of the cultural shifts that we need to see within education, and that is a long journey.

  Q23  Nia Griffith: Andrew, I understand that sometimes it is the families who do not want a person with learning disabilities to live independently. What can we do in a situation like that, where perhaps a person wants something different from their family?

  Mr Lee: Parents and families can be worried about us living independently because there is not the support around that we need. I think that advocacy is key for protecting the interests of an individual when those clash with what a carer wants, and there needs to be more recognition and funding for advocacy.

  Q24  Nia Griffith: Sometimes we understand from some people that it is actually families or carers that stop people from having girlfriends or boyfriends. Why does that happen, do you think?

  Mr Lee: People are stopped from having boyfriends and girlfriends for a number of reasons, all to do with us being regarded as not as good or as capable as other people. Some people want us to stop breeding in line with eugenics. Some people do not see us as adults and therefore as not capable of relationships. Some people think we will not be able to look after children. My ex-wife was told by her parents that sex was wrong because she had a learning difficulty and they had her sterilised. One of the factors in the breakdown of our marriage was the fact that we could not have children, which we desperately wanted. Society needs to realise that we are adults, with the rights of adults.

  Q25  Nia Griffith: Why do you think it is that sometimes people with learning disabilities are stopped from having children?

  Mr Lee: The way things work at the moment, people with learning difficulties are assumed to be bad parents unless they can prove otherwise. It is a case of guilty until proven otherwise. There are many bad parents without learning difficulties, yet it is we who are under suspicion. I think there should be parenting support for people with learning difficulties and it should start before a baby is born—this, incidentally, would benefit many people, not just people with learning difficulties, for example, teenage parents. Whenever professionals come into contact with parents with learning difficulties, they need to respect the fact that we have learning difficulties and explain things in a way we can understand. For example, if a doctor prescribes medicine for a child of a parent with a learning difficulty, they need to make sure they explain what the medication is and the dosage in a way that is accessible to the person with a learning difficulty. If a person with a learning difficulty has not understood what the doctor has told them and gives the wrong medicine, they would be viewed as bad parents and the child taken away, whereas if a person whose first language is not English were in a similar situation, it would be understood as an access need rather than a parental issue. Some guidelines have just come out around support for people with learning difficulties and these should be put in place.

  Q26  Chairman: Thank you. I think we are going to have to finish our session with you now because, unfortunately, we lost time at the beginning because of the vote. There may be other things we want to follow up with you in writing; if there are other things that come up, we may want to write to you to follow things up. Thank you for coming. I think you have been very helpful to us today and it has been a very good start to our session. Thank you.

  Mr Lee: We wish you the best of luck with your work.