I am a parent carer and I am speaking on behalf of my daughter. Jessica is 19 years and has Downs. I am also a governor of a special school and a trustee of our local mencap association. I am familiar with most of the issues which occupy the lives of carers and their dependents. Jessica is presently going through transition. She is in the first year of a 2 year course at College following a LSC approved course in life skills.

The questionnaire:

  Jessica enjoys good health and has always been well attended by our family doctor at the local surgery. She has also perfect teeth which I suggest is the result of a largely sugar free diet and regular dental inspection carried out by our local dentist (the practice has recently left the NHS and is now private. We continue to use the service because Jessica is comfortable with the doctors who examine her. On principle we prefer NHS).

  Although Jessica is past school age and so is not part of the school health programme she continues to have health checks at the surgery on an annual basis (which includes thyroid function blood tests). She has access to the nurse at the surgery almost on demand for minor ear problems. She is well know to the surgery and given appropriate attention when we take her for examinations and treatment.

  Jessica is inclined to be overweight but we maintain a fairly strict diet. I am not sure that diet is elsewhere always taken as seriously as we do at home. Jessica goes to college but we exercise some control by giving her sandwiches and drinks to take with her. Jessica is aware of our concern about diet and she agrees that high fat and sugar foods are bad for her health. She also understands that exercise is good for health (although she prefers to use her tricycle rather than walk). I have had a by pass graft and she often reminds me to take care of my heart—she understands from her experience therefore the importance of healthy life styles. Opportunities for exercise can be difficult to arrange for her since even short journeys can take a long time without transport and time is often a factor in her life as it is with everyone else.

  Jessica is quite an attractive looking girl without any of the usual complications associated with her condition and most people respond very positively to her. Speech is a problem, however, and because of relatively non-specific speech/language training when she was at school communication with strangers can be hard for her with the consequent tendency for people we meet to talk over her head, to me or whomever the carer is with her at the time. It is the one thing I regret not making more fuss about when she was school. Provision at school follows Total Communication programmes which we feel do not adequately address the issue of speech outside familiar networks of friends and family—essential for LD people to be accepted in mainstream situations.

  Jessica lives at home and will continue to do so because we are able to support her in a family setting which is for the moment the best accommodation setting for her. Other arrangements will have to be made when I or her mother become too old to provide adequate support although that is many years into the future. With proper support from Adult Services it may never be an issue. Jessica enjoys being away from us on short respite breaks which she takes once a month for two nights. She pays for this from her allowances. Jessica has said she would like to live in her own place one day and this may happen if the appropriate support network and living accommodation can be offered. We are not aware of the options in this respect although we have not needed to make serious requests for information. My understanding is that appropriate accommodation is hard to find for people with LD.

  At present Jessica receives all the benefits she is entitled to. For a short period we had the advice of a Social Worker who took my wife through all the benefits she thought my daughter was entitled to. My wife looks after Jessica's finances and pays for whatever is required on Jessica's behalf.

  My role is to provide support for Jessica's outside activities including transport (except for college which the LA provides during term time although we have to negotiate with them every year for some reason—we feel transport should come with the course if the student has been accepted for the duration...) I take Jessica to her club (Mencap) and any holiday provision we can find—usually about five to 10 days in the summer non-residential. It is provided by The Charities, Rose Road Association or Mencap and costs about £10 a day which is manageable for Jessica and gives her access to friendship circles she would not otherwise have. Jessica is also a member of the church and attends regularly. She enjoys singing in church and she has a powerful if not very tuneful voice. Jessica also takes part in the annual xmas pantomime although she has not had a speaking part yet. Last year we were given parts individually for the first time which meant Jessica performed on her own. A major step I think although she was still in a crowd. We hope one day she will have a speaking part because she enjoys performing and is an expert free dancer.

  Jessica voted in the recent local government elections. And was proud to do so.

  In terms of personal relationship Jessica likes her friends but generally does not have the freedom to form close relationships with boys. It is difficult to know how to arrange this.

  It is quite hard for Jessica to contribute to decisions which affect her life although she has had a PCP and she got help to attend the college of her choice through the discussion of options with her teachers and Connexions.

  My experience is that it is virtually impossible for Jessica to make a complaint without support. She may not yet have had any reasons for being dissatisfied with the services she has received. She may be too young to have had any serious problems that I have not dealt with on her behalf. She is highly independent and always answers questions about difficulties she may be facing (in college with other students or with teachers) with a characteristic "I'm alright... don't worry about me." Which may be the case.

  In connection with human rights and service provision generally, my feeling developed form personal experience and other carers' anecdotes is that training for staff in major areas such as hospitals, mainstream colleges, shops and workplace settings needs to be embedded so that LD is seen as normal rather than exceptional and always elicits appropriate and empathetic responses from staff—including some highly qualified professionals—or contracted service providers.

  One final point I would wish to make concerns the safety of LD people. It seems LD can be viewed by some individuals as an object for derision or even opportunities for entertainment if not outright abuse. Complaints by some self-advocates on our local LDPB paint an unpleasant picture of vulnerable people afraid to go outside their homes or to visit certain places. It would seem some public education about HR is required.

24 May 2007