Learning disabled leaders speak out on what they want from social work

The chairs of the National Forum of People with Learning Disabilities discuss how social workers can improve, their priorities for the people they represent and their fears about cuts.


The National Forum of People with Learning Disabilities

Karen Flood and Gavin Harding are co-chairs of the National Forum of People with Learning Disabilities, which works to represent the views of people with learning disabilities to government. 

Regional forums for each of the nine English regions each elect two people to sit on the national forum and represent people with learning disabilities from their region as well as support the national forum’s work.

The forum has membership of the National Learning Disability Programme Board, which co-ordinates government action on learning disabilities and is chaired by care services minister Norman Lamb. This is designed to help ministers and the board understand the issues and challenges that people with learning disabilities and their families and carers face.


What is the National Forum of People with Learning Disabilities’ top priorities and how optimistic are you that these will be achieved?

Karen Flood: Our members on the forum have all come a long way. We have all experienced prejudice, discrimination and social stigma throughout our lives. Our priorities, for ourselves and the people we represent, are: to live the life we choose; better health care; to make our own decisions; to have our own place to live; to have a job; and better support to be able to achieve all of this. I am very optimistic that with the right support and people in our lives all these things can be achieved.

Gavin Harding: I think it has to be opposing the changes to the benefit system because of the effect the changes are having on people being able to live their lives. Some people with learning disabilities need overnight support so they need to have a bedroom for their supporter. The changes to benefits mean that someone who needs support at night can’t claim housing benefit for the room the supporter needs. This could mean someone who has managed to organise their support in order to live independently might have to go and live in an institution just to get the support they need to live. Hopefully we can change things if the self-advocacy groups get behind and campaign for it.
What do social workers need to do to provide better support for people with learning disabilities?

Karen: They need to listen and be supportive at all times. Some social workers can be very helpful and go the extra mile. Some social workers are set in their ways and feel people with learning disabilities should stay where they are and not move on.

Gavin: Take people seriously when they report abuse and look into it instead of taking the word of providers.
What has been your best experience of social care or social work?
Karen: Not a lot sorry

Gavin: How they changed day services in Hartlepool. When individual budgets came in they asked what people who use the services wanted. They inspected the day centres and they made changes based on what they found out. Now people go to art studios, drama studios all sorts.
How well do you feel people with learning disabilities are listened to by professionals?

Karen: Truthfully, people with learning disabilities are not listened to by professionals in the way they should be. Sadly, professionals will say one thing one minute, then change their minds and say something else the next.   

Gavin: Local Authorities are different from area to area. A lot depends on how well staff are trained.
How far do you think people with learning disabilities are able to make decision about their lives?

Karen: Some people with learning disabilities have great support and are able to make decisions about their lives and what they want to do. Sadly, some people with learning disabilities have bad support and don’t get to make any decisions on what they would like to do.

Gavin: I think it’s gone backwards. Since Valuing People has gone the momentum seems to have been lost. Some providers aren’t changing the way they work; for instance in supported living, some staff act like it’s their house not the residents’. With day services being outsourced, some providers are just seeing people with learning disabilities as a way to make money.
What are you most proud of in your own life?

Karen: Me. I have great support. I make my own decisions go where I want, when I want. I am not scared to question people or to speak up to people.

Gavin: Being the first person with a learning disability to be elected a councillor.

  Karen Flood is an accomplished trainer and has trained other people with learning disabilities to go into care services to inspect and make sure people with learning disabilities are looked-after properly. She is co-head of First Step, an organisation which was set up in 2000 to assist learning disabled adults, particularly young adults.

 Gavin Harding was chair of York People First for many years until leaving to become more involved in Voices for People, a self-advocacy group in his home town of Selby. In 2001, he was involved in the drawing up of the government’s white paper Valuing People, which looked at equal rights for people with learning disabilities. In 2011 Gavin became the first person with a learning disability to become a councillor when he was elected to Selby Town Council.

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