Making things happen Richard West

Hi I’m Richard West I’m Black, British, Deaf, a carer and I have a Learning Disability And I campaign for the rights of people with learning disabilities

Words I use When I say black or Asian or BME I mean all ethnic minority communities This includes people new to the country and travelling communities as well

NAGLDE I am chair of The National Advisory Group on Learning Disability and Ethnicity (or NAGLDE for short). I am also a director of Inspired Services and I do lots of other things for CQC and others.

My job today I want to talk about some things that have happened to me. I want to see if we can learn from this and do things better for people leaving school now. I am talking not just as chair of NAGLDE but also as a black person with support needs.

Things I try to change There are lots of unmet needs and unfairness for BME people with learning difficulties It’s difficult getting services: There is not enough information Organisations are not good at supporting black people There is not enough language support Unequal Health If it’s bad for people with learning disabilities – it’s worse if you’re black and have a learning disability! Large body of literature showing this in relation to socio-economic position, housing, education, health Barriers include stereotypes

Valuing People Now I was really pleased to see we got a big mention in Valuing People Now. And that NAGLDE is now seen as working with government as a forum. We now need to work hard to change things before the cuts come!

We can use stories like mine and others to change what happens But - I know from my work with CQC that few councils now pay for support unless you have very high needs. Health also does less to stop problems that are not urgent from getting worse.

So what about my services? I get very little support. When I had a fire I was told to stop using the cooker instead of being helped to cook safely. I used the microwave and didn’t eat healthily. I then got diabetes! More black people with learning disabilities get diabetes than others!

You can see how this should work We should be doing more to support and check on people who are more likely to get a disease. This will lead to healthier and happier lives. We get to live longer and it may also be cheaper!

A little support could go a long way! But getting the support you need is still very difficult. I am now a carer for my partner. She has higher support needs than me. I wanted to be her partner, I didn’t know I was going to be her carer.

Carers with a learning disability We are a hidden group. And there are more of us now. Including young people at home. Its difficult for social services as they don’t have a box for us. So it’s difficult getting recognised and support. Thanks to Valuing People we are slowly changing this with the campaign ‘Who Cares For Us?’ They have in Westminster.

Working with families Some families have the wrong idea about people with learning disabilities. Some cultures don’t have a word for learning disability. Or they can be ashamed to have a child with a learning disability and think they will never be able to do anything.

Transition One important part of transition will be to think about jobs for people. Apart from supporting the family, the young person may need extra support to understand. Both the language people speak and their culture are important to think about.

Valuing Employment Now Makes good promises to work with people from BME communities to help them get jobs. We need to make sure families know about and can see what people with learning disabilities can do when they grow up.

What I don’t want I don’t want to see people with learning disabilities:- made to feel bad because we don’t have a job have nothing to do during the day because there are no centres or jobs for us have benefits cut when jobs don’t work out have the wrong type of support that doesn’t get work.

So, how should we do things? Be Sensitive to the needs, rights and cultural practices of people from all minority ethnic communities Talk to and include people and groups that represent their views and wishes Check that services are right for everyone (these might need different sorts of services)

Its important to remember People need to think they can do this work. With more Accessible information. Things have changed already but we need to do more to be ready for 2012 when there is less money. This work is not just a ‘one-off’ project, it should be how we always work. The research I did showed that pwld and their carers from MECs experience poor communication both to and from service providers. Clear that enabling access and control over services for pwld and the communities in which they live needs specific attention. Won’t just happen through services working in the same way for all communities. For people to have greater involvement and control in all areas of service provision they need to have better information. Accessible information (large fonts, easy language, different formats, graphics) needs to be combined with the non-traditional ways of making information available - community networks and structures that are familiar to people. Support to access this info in the form of key workers, staff with knowledge of learning disability and links with community based organisations. These may need to be developed if bme voluntary sector does not yet have these kinds of organisations. Advocacy particularly important for this group of people eg people with challenging behaviour -placed out of community, disconnected from practical/emotional support – advocacy offers increased autonomy, self-determination, inclusion, voice in service provision and planning.. Also to help ensure concerns of carers taken seriously eg developmental delay/abuse Evidence that gaps in advocacy provision particularly affect disabled young people from bme groups, women, asylum seekers and victims of racial harassment. Potential for exclusion at a number of levels. We found acute shortage of ME advocates and that there is a need for education about the concept which is not always understood or accepted within some communities. Form of advocacy offered needs to take account of cultural factors such as family roles in decision-making. Links between SPs and community groups underdeveloped or non-existent Often no ready made groups with a focus on learning difficulties or disability. Where groups are consulted this can often be token involvement - eg involving ME groups that have no contact with disabled people or involving groups in a way that marginalises their views and does not include their concerns in policy and planning developments. Partnership is more than one-off consultation anyway. Regular and systematic information more helpful to service planning than getting a snapshot picture of needs at one point in time. This kind of arrangement becomes more two way as relationship will involve accountability for taking action to meet the needs identified. Lack of community based groups in some areas means that support needed to encourage community development in this area if service partnerhips are develop. If these issues not addressed inequalities in service provision will not only be sustained but are likely to increase consultating with services users, staff training, appointment of ME staff, and developing specific policies

Because When you work in these ways it gets fairer for us and fairer for everyone. It means we are working in the right way to get better services now that will help us carry on Valuing all People after the government policy ends.

Thank you for listening And keep up the good work... We need you!