We are a User Forum called ChAD (choice for all in Doncaster).

  Our committee consists of 20 adults with learning disabilities, who meet monthly to find out what is happening around them which may have an impact on their lives, and to voice any concerns of theirs or the 700 people they represent.

  At our recent meeting we discussed your questions on Human rights and collectively as a group the following feelings and opinions were obtained. (The other enclosed sheets are what various groups and individuals have forwarded to us).[2]

  1.  Experiences of using services like health services, education, and housing and welfare benefits.

BAD EXPERIENCES WITH DOCTORS WERE:

  1.  That many did not speak to the individual but to their carer/support.

  2.  That they felt patronised by the way they spoke to them i.e., like children.

  3.  Big words were used that they did not understand.

  4.  They had not arrived when they had been told they would visit on a home appointment (resulting in one elderly lady having to ring an ambulance for her husband).

  5.  Waiting long time for hospital appointment, having sleepless nights worrying about their condition as they knew something serious was happening but no one explained things.

  6.  Dentists were also a problem for some people with them not being able to access a service. One lady was alarmed when the tools were unclean.

GOOD EXPERIENCES WERE:

  1.  Support has been given to people to fill in forms or they did not have to complete them.

  2.  Reassurance given by nurses when having injections.

  3.  Health day services offered a good interesting variety of activities.

  4.  For the individuals who had "health action plans", they felt it helped them.

  The group stated that they would like the following:

  (a)  treated as adults

  (b)  given information

  (c)  explain and speak clearly

HOUSING

  1.  Many people felt that they had to wait far too long to be re-housed (whether it be through ill health or incompatibility of the fellow residents.

  2.  What was particularly frustrating for most was the lack of Support workers; many had turned to Advocacy to help them after the situation had become critical.

  3.  Not able to live where they want and don't have a choice who with.

BENEFITS

  1.  Hardly anyone had any knowledge what benefits they received as it was controlled by their family or staff.

RELATIONSHIPS

  1.  Approximately a third of the group stated that they had a partner, however only one of these (who lived independently) saw her partner outside of the day centre environment.

  2.  Some people were not allowed a partner (parental/carer control).

  3.  Several of the group stated that they would love to live in the community with a partner with support.

  4.  One person stated that they did have a partner who they saw occasionally when staffing levels permitted.

  The general feeling was that there was a lot more support required to enable anyone to have a "proper" relationship.

TAKING PART IN THE COMMUNITY

  Some people did have support workers, however could not go out spontaneously, as support had to be booked for week in advance.

  2.  A big issue is for people who live in a residential setting who go out for the evening to pub, etc and have to be returning back at about 9 pm so the staff member can finish their shift at 10 pm.

  3.  Again very much controlled by availability of carers/staff.

  4.  Some people in independent living (with minimal support) are told what time they have to return from the pub and that they can only drink alcohol at weekends.

  5.  One male member stated that he thought it was particularly difficult for black and ethnic minorities (people with learning disabilities) when out in the community as they don't just get stared at but also get racist abuse.

HOW EASY IS IT TO HAVE A SAY IN MAKING DECISIONS WHAT AFFECT YOU

  1.  People stated that they felt they were able to make decisions at ChAD. Advocacy, and the Social education centres.

HOW EASY IS IT FOR PEOPLE TO COMPLAIN ABOUT A SERVICE

  1.  Some people did not have any knowledge of how to complain but they knew who to. (We are holding a forum shortly with someone from C.S.C.I in attendance to explain).

  2.  Some were afraid to complain.

  3.  Others complained to staff but felt that they were thought badly of particularly if it was regarding a member of staff.

  4.  Some people said they complained but it took ages for anyone to listen.

  5.  Several suggestions of who to complain to were, Advocacy, Key workers and the Citizens Advice Bureau.

EXAMPLES OF HUMAN RIGHTS WORKING WELL

  1.  Many people said that Advocacy had helped them to achieve what they wanted and ChAD had given them choices and information.

  2.  Person Centred Plans were good and helped to have their voices heard.

  3.  The general feeling was that an interpreter and/or Maketon would be helpful for some people.

  4.  Everyone agreed that declaration and convention on the rights of people with learning disabilities would be very helpful.