3. These themes are explored in more detail below. We also received a number of submissions from people with learning disabilities who told us that although they are happy with their lives, there are other people with more complex needs or more profound learning disabilities who may not be.

A parent of an adult with learning disabilities discusses her daughter's experiences.

[Our local Mencap] was preparing to purchase a 5-bedroom house in a local estate for four people to live in with overnight sleep-in cover. The local community learnt about this and a large group requested a meeting with our Chairman. He said it was the nastiest group he had ever been confronted by. They expressed their strong objections to the purchase.

A parent of an adult with learning disabilities and Trustee of local Mencap group.

A person with learning disabilities describes her previous experiences.

I answered a phone call from [the police force local to my son's school], who told me they suspected [my son] and two other pupils at [his school], had been sexually assaulted, and that they were passing the case onto [our local police] - which they did. Although [our local police] were sympathetic they categorically refused to interview [my son]. This was because he had mental health issues and extreme challenging behaviour.

Mother of an adult with learning disabilities.

Some people take the mick out of me and I used to get bullied, but I know people know about my learning disabilities … my girlfriend does not have a learning disability. She gets treated fairly more than me because I have a learning disability. People laugh at her when she is with m, but she just says he is the same as any one else.

A person with learning disabilities describes his previous experiences.

Making this work is down to attitudes, and, as many of the group members are over 50, they were brought up in a time when people thought very differently about what is possible if you have a learning disability. Parents were given very different advice and information and maybe people's hopes were pitched a bit lower.

Summary from a submission from a small self advocacy group.

As a carer I have found that judgmental attitudes are a barrier to good planning. As a family carer I would have to 'field' not only my son's distress but the attitudes of those who are supposed to help. People are too quick to judge 'a behaviour' without the knowledge of the disability.

A parent of an adult with learning disabilities describes his concerns.

I'm the one

Are you listening?

I'm the one that school described as hopeless

I'm the one that you described as friendless

I'm the one that kids described as useless

I'm watching

You're the one who writes my care plan

She's the one that limits my pocket money

You're the one that manages my lifestyle

He's the one who controls what I watch on TV

You're the one who tells me I have a choice

They're the ones that write my menu

You're the one that insists I explore my inappropriate behaviour

He's the one that swears at me

Is there anyone there?

Because I'm the one whose life you're supporting

I've the one you are paid to care for

I'm the one who is a challenge

Because I'm the one who is asking you to listen

Poem written by Champions

A Group of Trainers on Abuse, who are also People with Learning Disabilities.

Poor assessment leads to poor care plans leading to incorrect funding. Assessments seem less to do with person centred plans and the individual than with cost cutting. … Assessed and written in many cases by 'professionals' with little knowledge and training.

A family carer expresses her concerns.

• overcomplicated systems for accessing benefits;
• difficulties associated with access to direct payments, or other support. For example;

It annoys me when I hear the Government saying that people are not claiming all the money that they are entitled to because time after time we have had to fight, sometimes reapplying three times before we have got the allowances we were entitled to.

A family carer expresses her concerns.

When group members can't do something they want to or that is important to them, it is usually not because people don't respect their rights but is usually down to lack of staff or other support or having no transport.

Summary from a submission from a small self advocacy group.

• eligibility criteria and exclusion from service provision;

We are concerned the drift away from local community support is showing signs of a return to an institutional mind set and that a person with learning disabilities is losing the basic human right of respect and access to services.

Chair of a local action group expresses her concerns.

• closure of existing services;

Surely it is an infringement of their human rights to take their facilities away from them without consultations and without any alternatives in place, it has been said that the private sector will provide day centres and facilities, but at present, there are not private sector facilities available at all.

Person involved in a local campaign against day centre closures.

• inability to access care and support in health and social care, including in hospitals. For example;

I have been advised by carers [that] nursing staff on wards do not provide adequate care to ensure that adults with learning disabilities are able to go to the toilet, have access to food and water and in very rare circumstances pass [on] important information [… ]

A submission on standards in healthcare.

In the past when we've used our GP we found we were not listened to or even believed. We had to persist and the community nurses helped get us referred to the hospital.

A family of people with learning disabilities.

When I go to the doctors or to hospital they always talk to my mum about what is wrong and not me. The dentist is better he talks to me as well as my mum. I think they would all tell me what is happening.

A learner from Linkage Community Trust expresses their views.

I am not happy because the government are not doing their jobs properly because the doctors are not talking to me as a person because I have special needs.

A person with learning disabilities expresses her view.

Each time he has been in hospital I or my husband has had to stay with him as the care he requires is not provided in local hospitals. Also there are no facilities (slings/hoists/changing bed) to help with his personal care, he is doubly incontinent. In hospital he has to spend all day in bed as there is no way of transferring him to a chair/wheelchair.

A parent of an adult with learning disabilities describes her experiences.

Support Worker, Mencap.

While the situation for many people with learning disabilities has improved dramatically over the last twenty years, there is still a long way to go before they will be in a situation which parallels that of most other members of the community. The White Paper Valuing People was full of excellent recommendations, many of which have either been paid lip service, or have been ignored completely. There is a feeling amongst professionals that it was a lot of rhetoric without legislative teach to ensure that its recommendations would be put into practice. There is still a huge gap between what was recommended and what actually happens.

An NHS Clinical Psychologist in Learning Disability Services.

Valuing People was a document that amongst other things states "nothing about us without us". Unfortunately despite the guidance given in this white paper, in my view, implementation has been patchy and there seems to be a lack of commitment within services to change the way they work

A parent of an adult with learning disabilities expresses his views.

The White Paper Valuing People talks about the importance of community presence and participation, but £1.75 per week to spend is not enough to enable anyone to do that.

A parent of an adult with learning disabilities expresses her views.

A learner from Linkage Community Trust expresses their views.

As an elderly carer now, I would also like to promote the concept of individual advocates for those in residential care, at the moment we ensure that the provision is good, but when we are no longer around, someone who is actively independently concerned with my daughter's quality of life is of paramount importance, so could this also be part of your considerations.

A parent of an adult with learning disabilities expresses her views.

What would help people with learning disability get their human rights? More self advocacy workers to help people speak up for themselves; more representational advocates to take up specific cases and act on peoples behalf; more investment in getting the right sort of information out there in a form that people understand

Submission on behalf of two people with Learning Disabilities

Being a contributing member of one's local community doesn't just mean going to the local, mainstream leisure centre or buying one's own groceries; it should mean the opportunity to do meaningful, paid, work, for those who want to and are able.

Mother of an adult with learning disabilities expresses her views.

• inability to access day activities or appropriate residential care, or respite care for carers;
• supporting people with learning disabilities to form relationships with family, friends boyfriends and girlfriends and their children;

[Her] father and I now supplement [her] income, in order to enable her to participate in community life, and maintain her friendships. Without our help, [she] would have a life of poverty, and social isolation.

Mother of an adult with learning disabilities on her daughter's experiences.

I think it is harder for the learning disability person who is gay.

A learner from Linkage Community Trust expresses their views.

We are unable to go far as there are no disabled toilets in which to attend to his needs. So as a family we are all restricted in the participation in the local community. He is unable to meet with friends or socialise and without us taking him for a local walk or a short drive in his van we would be completely isolated.

Mother of an adult with learning disabilities on her family's experiences.

Services are not supporting relationships. Families are regularly disrespected even in public arenas such as conferences. Family connections are not supported, families have to make all the running. For people with a learning disability, having ordinary relationships that involve sex (like everyone else) is not supported in fact often subverted or prevented.

Mother of an adult with learning disabilities expresses her views.

Advocacy West Lancs.

Training around rights would help people with a learning disability get their human rights. Twelve of the Forum Members sit on the Cornwall Learning Disability Partnership Board. They are called The Get Real Team. Have had training around rights and feel that it is easier to speak up

Cornwall People First
Bodmin Forum.

I have recently left employment at a residential home for adults with learning disabilities. During my two years there and since leaving, I believe that these adults do not get to exercise their human rights in several aspects. They are not informed of their rights in a manner which they can understand, therefore are not aware that they have such rights.

Former support worker expresses her views.

I care for an adult with a learning disability and feel it is very important that his human rights are met and that he should be treated no differently in this respect to any other person.

A carer expresses their views.

People who have learning difficulties should have the same rights as any other person and the Government have rules in place to make this happen.

A person with a learning disability expresses their views.

Protecting the Human Rights of People with Learning Disabilities: This will not be achieved by rhetoric and fine words. Unless there is a way of giving the legislation some teeth, then changes will not occur.

Consultant Clinical Psychologist

11. We asked people for their views on the recent UN Convention on the Rights of Persons with Disabilities. A number of submissions commented on the ability of the UN Convention to make a difference to the way that people with learning disabilities are treated.

I don't know much about the convention on the human rights of people with disabilities but do feel very strongly that everyone with a disability should have equal rights to those whom don't have disabilities.

A person with learning disabilities expresses his views.

The Convention on the Rights of Disabilities can help them (and should help them) to have their rights - BUT, they must realise their special needs, which are different to other disabilities.

A family with learning disabilities express their views.

Most of the principles in the Convention are already stated in other places but it does pull everything together and really highlights that people with a learning disability have the same rights as everyone else.

A small self advocacy group in Bedfordshire.