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Last week’s Independent Living Payment (ILP) Community Gathering was an incredible success, and we want to extend our heartfelt thanks to everyone who attended, contributed, and made the day so meaningful. The room was filled with WECIL community members, particularly those who use our ILP services to manage a Direct Payment, as well as colleagues from Bristol and South Gloucestershire local authorities whose social workers, social work practitioners, commissioners, and other professionals came together for engaging discussions and insightful conversations.
It was fantastic to see so many ILP customers sharing their experiences, learning from each other, and shaping the future of independent living. The energy in the room was inspiring, and the conversations were full of passion and purpose.
A Packed Agenda of Insightful Talks
We were privileged to have an amazing lineup of speakers who shared their knowledge, expertise, and lived experiences. Their contributions were powerful, informative, and empowering.
Direct Payment Users Share Their Stories
ILP customer Sarwat shared a deeply personal account of how Direct Payments have transformed her family’s life, giving them greater control, flexibility, and independence. Before accessing Direct Payments, she struggled with a rigid social care system that did not fully meet her son’s needs. Traditional services often lacked flexibility and cultural sensitivity, making it difficult to find the right support.
With a Direct Payment, she was able to employ a Personal Assistant who truly understands her son’s needs, ensuring consistency and personalised care. This shift allowed her family to shape a support system that worked for them, rather than being forced into an inflexible structure. Having control over decisions affecting her son’s daily life has been life-changing, offering security and stability that standard care services could not provide.
Sarwat also spoke about the challenges of managing a Direct Payment, particularly with employment responsibilities, financial management, and navigating social care bureaucracy. She described WECIL’s ILP Team as an invaluable source of support, guiding her through recruitment, legal obligations, and social care assessments. Their advice helped her feel confident in managing the Direct Payment effectively, ensuring her son received the right care without additional stress.
Her speech was a powerful reminder of how Direct Payments can provide Disabled people and their families with real choice and autonomy. She highlighted the importance of Disabled People’s Organisations (DPOs) like WECIL in helping families make the most of their payments, ensuring they are not left to navigate the system alone. Her words resonated with many in the audience, reinforcing why self-directed support is so vital.
WECIL’s Board and Governance
Ruth Pickersgill, Chair of WECIL’s Board of Trustees, spoke about WECIL’s governance and the importance of Disabled people leading the organisation. As a Disabled People’s Organisation, at least 75% of WECIL’s Board members are Disabled people, ensuring lived experience shapes decision-making.
A key announcement was the constitutional change agreed at last year’s WECIL AGM to co-opt up to five service user representatives onto WECIL’s Board, including one specifically for an ILP customer. This initiative gives people who use WECIL’s services a direct voice in shaping its future, making sure policies and priorities reflect real experiences.
Ruth encouraged Direct Payment users to apply, emphasising that no prior governance experience is needed—just a commitment to Disability Equality. Training and support will be provided, and Board materials will be made accessible to ensure full participation.
WECIL Steering Group & University of Birmingham Research
Graeme Dundas, Chair of the WECIL Direct Payment & Payroll Support Steering Group, spoke about the group’s work in improving WECIL’s services and ensuring they continue to reflect the needs of Direct Payment users. He encouraged attendees to get involved in shaping future developments, emphasising the importance of co-production in making services more responsive and effective. The Steering Group provides a space for Direct Payment users to share their experiences, highlight challenges, and influence how WECIL supports independent living.
This Steering Group will also work closely with the ILP service user representative on the WECIL Board, ensuring that the experiences and priorities of Direct Payment users are directly influencing governance decisions at the highest level.
Jilesh from the University of Birmingham introduced research focused on improving access to Direct Payments for people from minoritised communities. He highlighted the barriers that many individuals face, including language differences, cultural stigma around social care, and a lack of clear information about Direct Payments. The research aims to identify solutions to make Direct Payments more inclusive, ensuring that all communities can benefit from the flexibility and autonomy they provide.
Both speakers reinforced the need for collaboration between Direct Payment users, service providers, and researchers to create a fairer, more accessible system. Their talks encouraged attendees to get involved, ensuring that lived experience continues to drive change in social care policy and practice.
The Campaign for Real Care
Colin and Charli from the Campaign for Real Care spoke about the urgent need for change in the social care system and introduced their Wellbeing Charter, a framework for improving the quality of care and ensuring that support services meet the real needs of Disabled people.

The Campaign for Real Care advocates for a rights-based approach to social care, challenging the current system, which often prioritises cost-cutting over people’s wellbeing. Colin and Charli highlighted how many Disabled people experience inconsistent, underfunded, and inflexible services, leaving them without the support they need to live independently and with dignity. They spoke about the failures of the current system, from the undervaluing of Personal Assistants and carers to the barriers Disabled people face in accessing the right care on their own terms.
The Wellbeing Charter sets out practical steps for change, including:
- Ensuring that care is person-centred and gives people real choice and control over how they live.
- Improving the rights and pay of Personal Assistants and care workers, recognising them as skilled professionals.
- Challenging the underfunding of social care and pushing for investment that prioritises quality over cost-cutting.
- Working with DPOs, trade unions, and advocacy groups to campaign for policies that reflect the lived experience of those using social care.
Colin and Charli emphasised that real change will only come through collective action. They encouraged everyone in the room to get involved in the campaign, whether by sharing their experiences, engaging with decision-makers, or supporting the call for fair and sustainable social care reform.
Their talk was a reminder that the current system does not have to stay the way it is. With Disabled people leading the conversation, there is an opportunity to reshape social care into a system that values independence, dignity, and real support for all.
Bristol Reclaiming Independent Living
Mark from fellow local DPO Bristol Reclaiming Independent Living spoke about grassroots Disability activism and the work they are doing to push for systemic change. He shared ways for attendees to get involved in campaigns that directly affect the lives of Disabled people.
Access Ava – Free Legal Support at Your Fingertips
Finbar from Access Ava introduced an innovative, free legal chatbot now available on the WECIL website. Access Ava provides practical legal guidance for Direct Payment users and social care recipients, assisting Disabled people in challenging unfair decisions about their support.
Developed by Access Social Care, Access Ava is an AI-driven service designed to deliver legal information about community care to older or Disabled people, their families, and carers. The chatbot guides users through their specific situations and helps generate letters that can be used to address and resolve issues they face. This tool is accessible 24/7, ensuring support is always available when needed.
Access Ava is designed to be user-friendly, providing clear and concise information to help users understand their rights and navigate the complexities of social care law in England. The content is verified by qualified lawyers, ensuring accuracy and reliability.
This valuable resource is available to everyone via the WECIL website, alongside WECIL’s own chatbot, Cecil from WECIL. Cecil has been designed around Easy Read principles to ensure that information is fully accessible. These two chatbots work together to provide different kinds of support—while Cecil helps answer general questions in a simple, easy-to-understand format, Access Ava offers in-depth legal guidance for those navigating social care decisions.
For a brief overview, you can watch Access Ava’s one-minute introduction video:
The British Institute of Human Rights (BIHR) – Using Human Rights to Challenge Unjust Decisions
The BIHR team delivered an insightful and empowering session on human rights in health and social care. They focused on how Disabled people can use human rights law to challenge unfair decisions, ensuring their rights to dignity, choice, and autonomy are respected.
The session began by explaining what human rights are and why they matter in everyday life. The Human Rights Act protects people’s fundamental freedoms, ensuring they are treated with fairness, dignity, and respect. BIHR emphasised that public bodies, including local authorities, the NHS, and social care providers, have a legal duty to uphold these rights when making decisions about care and support.
A key focus was the right to private and family life, which is particularly relevant for Direct Payment users. This right includes being involved in decisions about care and treatment, being able to choose where and how to live, and being free from discrimination. The session used real-life examples to illustrate how individuals have successfully used human rights arguments to challenge decisions that restricted their independence.
One case study featured Robert’s story, where a social care provider refused to support him in attending a gay pub, even though they supported others in going to pubs of their choice. By understanding his right to private life and freedom from discrimination, Robert was able to challenge this decision and secure support that respected his identity and autonomy.
BIHR also provided practical tools and strategies for challenging decisions. They encouraged people to:
- Ask service providers to explain how they are considering human rights when making decisions.
- Use human rights language when advocating for fair treatment.
- Challenge restrictive decisions by questioning whether they are lawful, for a good reason, and the least restrictive option available.
Importantly, BIHR stressed that individuals do not need to be legal experts to use human rights in everyday situations. They highlighted their free online resources to help people understand their rights and take action when necessary. These guides, blogs, and case studies are available on the BIHR website: www.bihr.org.uk/get-informed.
The session left attendees with a clearer understanding of their rights and how they can be used to advocate for better social care and support. It was a powerful reminder that human rights are not just legal principles, but practical tools that Disabled people can use to live with dignity and independence.
A Big Thank You to Our Speakers & Attendees
Each speaker brought valuable insights, real-life experiences, and crucial knowledge to the table. We appreciate the time and effort they dedicated to making this event a success.
And to all of you who attended—thank you for being there, sharing your thoughts, and engaging in these important discussions. Your voices are what shape WECIL and help push for a fairer, more inclusive society.
By becoming a WECIL member, you can stay connected, have your voice heard, and play an active role in shaping the future of independent living and Direct Payments. Membership is free and open to all Disabled people, allies, and supporters who believe in disability equality. As a member, you’ll receive updates on events, campaigns, and opportunities to get involved in making lasting change.
Sign up today and be part of a strong, supportive community working towards a more inclusive society.