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Learning Disability England

This six month Knowledge Transfer Voucher (KTV) project with Learning Disability England (LDE) and The Open University’s (OU’s) School of Health, Wellbeing and Social Care, successfully investigated how self-advocacy groups for people with learning disabilities are funded, and the impact this funding has.

Academic researchers from the OU worked alongside senior members of LDE, in collaboration with an expert Advisory Group.

The project identified that there is potential to extend the benefits of self-advocacy if more equitable funding is made available across England. It highlighted that while some commissioners are highly committed to funding self-advocacy, others need to better understand what self-advocacy is, and how it can support national and local policy objectives. The research also confirmed that the non-statutory status of self-advocacy in England makes it vulnerable to funding cuts.

The project laid the foundation for us to jointly pursue further bids for funding in this under-researched area.

This project has already made a positive impact in strengthening self advocacy through the process of bringing together people with different roles, their expertise and networks. This, added to the new information and insights from the research itself, will contribute to strengthening self-advocacy and supporting people’s voices and rights.

Sam Clark
CEO Learning Disability England

Learning Disability England’s needs

Learning Disability England brings its members - people with learning disabilities, families, friends and people that work in services - together on an equal basis. LDE was aware that despite playing a vital role in supporting the health and wellbeing of people with learning disabilities, self-advocacy groups face a postcode lottery in relation to funding. This has led to significant inequity in self-advocacy provision across England.

LDE and its members worked with Open University specialists in learning disability, with expertise in self-advocacy, to identify the factors that lead some groups to secure stable and sustained funding, while others faced funding arrangements that are much more precarious.

The Knowledge Transfer Voucher Project

Dr Liz Tilley worked alongside OU Visiting Professor Jan Walmsley, OU Visiting Researcher Dr Lorna Rouse, and self-advocate Sean Picken from My Life My Choice. The team collaborated with Sam Clark, CEO of LDE, and Gary Bourlet, LDE Membership & Engagement Lead.

An expert Advisory Group was established by LDE comprising senior leaders of five successful self-advocacy organisations and a local authority commissioner to steer the project, advise on the sample and interview questions, and support access to interviewees.

The team:

  • examined publicly available information on the funding of self-advocacy groups in England to learn about funding structures
  • interviewed staff and members from eight self-advocacy groups, five commissioners and a director of adult social care, comprising different organisational ‘models’ and a mix of funding arrangements
  • discussed analysed data with the Advisory Group and fed it into an accessible, sector report

The Advisory Group remains in existence to advise on dissemination and future funding bids.

Self-advocacy groups play a vital role in supporting the health and wellbeing of people with learning disabilities. But their sustainability depends on fair and reliable funding. Our project has shown the factors that support this, while providing the foundations for future research.

The Open University’s Liz Tilley
Senior Lecturer, Health and Social Care

Project benefits

The project generated valuable data on the impact of self-advocacy funding and commissioning arrangements, including examples of good practice and advice on securing funding, enabling LDE to campaign for more equitable funding for self-advocacy at both the national and local level.

The project benefitted from a partnership that brought together the research expertise of the OU with the policy-influencing capability of LDE.

The expert Advisory Group has agreed to form a nascent Consortium to support the development of future self-advocacy research funding bids.

The Advisory Group also extended the research team’s networks, enabling them to develop important contacts in the learning disability and social care sector, including the Association of Directors of Adult Social Services, which will be integral in sharing good commissioning practices more widely.

A lot of self-advocacy groups have been struggling in recent years – some have even closed, meaning in some areas there is no user-led organisation. This work will help self-advocacy groups or new self-advocates understand more about good ways of getting funding or earning income so they keep going. The pros and cons of different models will help everyone understand more.

Gary Bourlet
Learning Disability England

Learning Disability England

Learning Disability England brings people and organisations together to create a movement for change where people with learning disabilities, families, friends and paid supporters come together on an equal basis. As a membership organisation, members work together to build a world where people with learning disabilities have good lives with equal choices and opportunities as others.