Helping people with learning disabilities take control of their lives

A project to help learning disabled people take charge of their support is helping Cornwall shed its legacy of abuse, reports Maria Ahmed

Project details

● Project name: Get A Plan in Cornwall, delivered by the Foundation for People with Learning Disabilities.

● Aims and objectives: Develop self-directed support and person-centered planning skills among people with learning disabilities and their families and transfer knowledge and skills to local people to direct their own support.

● Funding: £60,000 in 2010-11 from Cornwall Learning Disability Partnership Board. Service planning to become a self-funding social enterprise.

● Staff: Full-time coordinator and part-time facilitator/mentor; overseen by head of learning disability programmes. The foundation also pays people with learning disabilities, families and practitioners to do facilitation/training.

● Number of service users: Currently, 32 people are being supported and referrals average at five or six a week.

● Outcomes: Local employers are hiring people with learning disabilities; people with learning disabilities are able to use their personal budgets more effectively.

In 2006, an investigation revealed abuse of people with learning disabilities in Cornwall at the Budock Hospital and other NHS services.

As part of its response, Cornwall Council commissioned the Foundation for People with Learning Disabilities to help develop self-directed support and person-centred planning for people with learning disabilities.

Now in its fifth year, the Get A Plan in Cornwall project has helped people to live more independently and provided training for carers in helping them do so.

Molly Mattingly, head of learning disability programmes at the foundation, says it has led to a “culture change” by giving people more control over their support.

“At the time of the Budock incidents the culture was insular and information was hidden from parents and carers. [Inspectors] found that service users didn’t have person-centered plans, which are a really important piece of support that enables people to have a say in their future,” she says.

One of the key successes has been the transfer of knowledge and skills in person-centred planning to local people, which Mattingly hopes will allow the project to become ultimately self-sustaining as a social enterprise. “We want to find local people in Cornwall to carry on the work, rather than needing us to come in,” she says.

This has involved providing training for practitioners, carers and service users both in developing person-centred plans and facilitating person-centred planning meetings. Training has also been provided in developing circles of support around people with learning disabilities.

Advice hubs

People with learning disabilities and carers trained as facilitators are now running information and advice hubs for fellow users and carers in community centres around the county, with support from social workers and project co-ordinator Jenna Tregonning.

A key area of advice provided by the hubs is in support planning for personal budget holders.

The project aims to promote a creative approach to support planning, with positive results. In one case, a man with learning disabilities used his personal budget to get an allotment and is now considering marketing his produce. “He’s gone from being a person sitting in a day centre to someone who is part of the community,” Mattingly says.

Tregonning says people are now getting more support with employment and leading a “more ordinary life” by getting out more and taking part in activities such as swimming.

Balancing financial realities and aspirations can be a challenge, particularly when it comes to finding appropriate housing to help people live more independently, Tregonning says. “We still have contact with a number of people who are in residential care. Housing is a massive issue for everyone in Cornwall but we aim to get people as close to their aspirations as possible.”

Long journey

The project’s achievements come at the end of a “long journey” for many people struggling to trust services, Tregonning says.

Families were left “frightened” by the Budock case and more recently by the alleged abuse of people with learning disabilities in the Winterbourne View hospital in South Gloucestershire, revealed by Panorama in May.

“Post-Winterbourne, people were scared all over again. Until they see others doing well they find it hard to believe. We have to start with small steps so everyone can be confident, particularly those who have had their hopes dashed before,” Tregonning says. “Building trust can be achieved through the smallest actions such as sending an email or giving a call.”

According to Scott Hall, commissioning officer in adult social care at Cornwall Council, the project is helping to bring about change in the role of statutory services, as well as the way they are viewed.

“People are realising they don’t need to be so dependent on statutory services, which don’t get things right all the time. The project has been very successful in delivering alternative approaches and allowing people to take control over their lives,” he says. Hall hopes plans for the project to become a social enterprise from next year will further shift the focus away from traditional statutory social care towards the wider community. “This would be an excellent way to go,” he says.

Independence at last

When Vanessa Harmer first heard about the Get A Plan project, she thought it was a “wisecrack idea” and couldn’t believe it was real.

At the time, her daughter Meghann was about to turn 18 and wished to live independently, but the options seemed limited. Meghann was initially offered a bed in a residential campus housing 60 people, over 72 miles away from her home and community. Vanessa and her husband Andrew felt reluctant to accept it.

“I hated the idea of Meghann having a bad seizure and me having to travel to reach her,” Vanessa says.

With the help of Get a Plan, Meghann and her parents were able to identify other providers and find a better alternative – a flat just four minutes from her family home.

Meghann’s care plan was put together with the help of her family, friends and local community members, who made up one of the “circles of support” the project aims to put in place for service users.

The project team set up and attended meetings with numerous support providers to discuss Meghann’s requirements. With support from her family and circle, she was also able to interview and recruit her own support staff along with the provider – something which would not have been possible if she had moved to a residential care setting.

Meghann, now almost 22, loves her new life and has “blossomed” since the move, her mother explains. “It has made so much of a difference to our relationship. Before that I was looking after her full-time and respite was not available. I felt I was wishing for the unobtainable, but the project made it a reality.”

Meghann continues to be supported by the project, receiving regular visits from co-ordinator Jenna Tregonning to continue her personal care planning. “It has totally transformed our lives by giving Meghann the chance to live independently from us,” Vanessa says. “Mum no longer has to do everything, and she can do things for herself and the team can support her.”

She hopes the project can continue its success as it seeks to establish new sources of funding as a social enterprise. “I pray for other people’s sake it can continue to develop. Somebody needs to look seriously at what this project is doing for people like my daughter – so many more people could benefit. As a full-time carer you need someone to encourage you to see what’s possible,” Vanessa concludes.

Picture caption: Andrew, Vanessa and Meghann Harmer

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