Independent Disability Advisory Panel Controversy

Disclaimer: This article is news commentary and general information, not legal advice. Policies, recruitment criteria, and guidance are accurate as of 10th September 2025 and may change. Always consult official sources and independent legal advice for your circumstances. This statement advocates for inclusive recruitment practices that value both lived experience and professional expertise. It does not intend to exclude or prioritise individuals based on disability status. Instead, it emphasises the importance of diverse perspectives, disabled and non-disabled alike, in shaping equitable, effective policy and organisational change. All roles should be filled based on merit, insight, and the ability to contribute meaningfully to a multidisciplinary team.

“Exploring the tension between transparency and control

The Department for Work and Pensions (DWP) has appointed disability rights expert Zara Todd to chair the new Independent Disability Advisory Panel. The panel is billed as a way to “listen to, learn from, and collaborate with” Deaf and disabled people and people with long-term health conditions. It will include up to 10 members and advise across health and disability policy. GOV.UK

Who Is Zara Todd

Zara Todd’s expertise in disability rights is grounded in a powerful blend of lived experience, strategic leadership, and over two decades of professional advocacy across national and international platforms. While she doesn’t hold a traditional academic title like “Professor” or “PhD,” her qualifications are widely recognised through her impact, research, and advisory roles.

Here’s what makes her a recognised expert:

🎓 Lived Experience & Advocacy

Zara identifies as a disabled person and has been active in disability rights since the early 2000s.
Her advocacy is rooted in personal insight, which she channels into systemic change, especially around leadership, inclusion, and accountability.

🌍 International Recognition

She’s advised major institutions including:
- The UK Government
- The British Council
- The EU Fundamental Rights Agency
- The Council of Europe

📚 Research & Thought Leadership

In 2017, she completed a Winston Churchill Memorial Trust Fellowship, studying disability leadership in Australia and New Zealand.
- Her findings helped shape the National Lottery Community Fund’s lived experience leadership programme.
She co-authored ACEVO’s Hidden Leaders report, which explores disability leadership in the third sector.
Her 2018 Fellowship Report is considered a leading piece of research on disability-inclusive leadership.

🏛️ Strategic Roles

Currently Chair of the UK Government’s Independent Disability Advisory Panel, guiding health and disability policy.
Head of Equity at the Centre for Knowledge Equity, where she supports inclusive organisational change.
She’s also developing a social enterprise to support disabled people working in the third sector.

Zara’s qualifications are a testament to how expertise can be built through experience, impact, and strategic insight, not just formal degrees. Her work has shaped funding programmes, policy frameworks, and leadership models across the UK and Europe.

The controversy: non-disclosure agreements

The same guidance requires all panel members to sign a non-disclosure agreement (NDA) because “sensitive information” may be shared. That clause has sparked a backlash from disabled people’s organisations and campaigners who argue the NDA undermines transparency and trust.

Disability News Service reported widespread concern about the gagging requirement and the restrictive size of the panel. Fazilet Hadi, head of policy at Disability Rights UK, said the panel’s “tone and nature” appears to “continue the tradition of departmental secrecy” and called blanket NDAs “completely unacceptable.”

Campaigner Flick Williams described NDAs as “an instrument that allows those with power to silence those without,” echoing a view she has also shared publicly. X (formerly Twitter)

Applications opened on 1 September 2025. The official guidance confirms 10 vacancies, a time commitment of up to 1.5 days per month, £200/day remuneration, and a term currently running to 31 March 2026 (with possible extension).

⚖️ Will the Data Be Biased?

That’s the heart of it. If panel members can’t speak freely:

External validation is impossible; we can’t know whether feedback is being accurately represented.
Broader community engagement is stifled—members may be discouraged from consulting widely.
Policy outcomes may reflect government priorities more than lived realities, especially if dissenting views are filtered out.

It’s not just about data, it’s about power and trust. NDAs shift the balance toward institutional control, which can distort the very insights the panel was meant to gather.

💡 What Could Be Done Instead?

Many experts suggest a code of conduct with confidentiality clauses, rather than full NDAs. This would:

Allow members to share general insights and consult their communities
Protect sensitive data without silencing critique
Foster trust and transparency

Selection criteria: lived experience, yes; policy literacy, optional?

The DWP’s essential criteria emphasise experience with DDPOs/charities or health/disability networks, providing strategic advice on health and disability, and understanding barriers to employment. Notably, the criteria do not explicitly require knowledge of politics, economics, or current affairs—even though members will be advising on policy with potentially wide socioeconomic impact.

Public trust is already fragile after months of heated debate over the Universal Credit and PIP reform bill, and many disabled people fear being talked about rather than with. A panel that starts behind a veil of secrecy risks reinforcing that mistrust instead of repairing it.

Our editorial stance (and how we work)

At DisabledEntrepreneur.UK & DisabilityUK.co.uk, we believe the government should take a leaf out of our book:

We carefully research every topic and publish facts within our editorial code of conduct and the law.
We do not gaslight or spread misinformation; we verify, cite sources, and correct errors promptly.

Personally, had there not been a gagging order and more time flexibility, I would gladly have considered helping the government understand the realities and barriers disabled people face day-to-day. However, because of my own time constraints, running a business, caregiving, and studying, it would have been difficult for me to juggle my hours, let alone do anything else. A meaningful advisory process needs transparency, accountability, and open channels to the wider community, not just a closed room of ten.

“Earn or Learn”: Practical ways we help

We write across all topics that affect disabled people, policy, rights, health, and employment, and we pair that with hands-on support:

Back to work via “Earn or Learn”: learn a new trade or skill, re-enter the labour market with confidence, or pivot careers with accessible training.
Become your own boss: if employment options are limited, we help you start a business, from domain names and branding to website design, market research, and digital marketing.
Done-for-you businesses: turnkey set-ups to get you trading faster.
Navigating the system: we write plain-English guides to disability support, benefits, and appeals in a system that’s too often misaligned with disabled people’s needs.
Law & human rights: we cover the legal landscape rigorously, something our editor is particularly passionate about.

We’ve written extensively on these subjects and welcome readers to explore our sites to understand the lived experiences of disabled people, the vulnerable, and low-income families.

Will the panel deliver?

Success will hinge on three things:

Dropping or narrowing: the NDA to allow reporting out where possible;
Broader engagement: beyond the ten members, so external voices feed into the work; and
Ensuring members: bring or quickly gain policy literacy so lived experience translates into workable, evidence-based recommendations.

It will be interesting to see whether recruitment attracts a diverse field and whether DWP adjusts its approach to build trust rather than manage optics.

Editor’s note

I intend to finish my Law degree and then stand as an MP. Whatever our politics, we can agree on this: good policy is co-produced, open to scrutiny, and led by evidence plus lived experience, not confidentiality clauses.

If I were shaping policy, I’d prioritise engaging disabled entrepreneurs, especially those running online businesses, who have firsthand insight into the systemic barriers they face. There’s already a wealth of published evidence highlighting these challenges, so it’s difficult to justify spending taxpayers’ money on recruiting individuals who may lack political or policy experience. The newly formed advisory panel, chaired by disability rights advocate Zara Todd, is tasked with advising Sir Stephen Timms and the Department for Work and Pensions (DWP) on matters including disability benefits and employment. Its stated aim is to “convene and connect” disabled people’s expertise with the department’s approach to policy design and delivery.

🧩 10 Possible Strategic Professions to Recruit

Disabled Occupational Therapist Brings clinical insight into accessibility, rehabilitation, and workplace adaptations.
Disabled Social Worker Offers frontline experience with disabled individuals navigating benefits, housing, and safeguarding systems.
Disabled Human Rights Lawyer Provides legal expertise on discrimination, equality law, and strategic litigation.
Disabled UX Designer (Accessibility Specialist) Ensures digital platforms are inclusive, intuitive, and compliant with WCAG standards.
Disabled Entrepreneur / Founder Shares real-world experience of running a business while navigating systemic barriers.
Disabled Academic Researcher (Disability Studies) Grounds policy in theory, evidence, and intersectional analysis.
Disabled Benefits Advisor / Welfare Rights Specialist Understands the intricacies of Universal Credit, PIP, and appeals—vital for shaping fair policy.
Disabled Mental Health Clinician (with neurodivergent insight) Adds depth to discussions around psychiatric disability, trauma-informed care, and service gaps.
Disabled Creative Practitioner (e.g. writer, performer, artist) Brings cultural insight, storytelling power, and alternative modes of expression.
Disabled Trade Union Representative (with disability focus) Offers experience in workplace advocacy, collective bargaining, and employment rights.

This kind of multidisciplinary team would reflect both lived experience and professional expertise, creating a richer, more representative advisory structure.

To build a truly representative and effective advisory structure, it’s essential to recruit both disabled and non-disabled professionals. This isn’t about exclusion, it’s about integration. A multidisciplinary team that blends lived experience with sector-specific expertise ensures that policy is shaped not only by those who understand barriers firsthand, but also by those with complementary skills in law, design, healthcare, research, and governance. When diverse perspectives are valued equally, the result is richer, more responsive decision-making that reflects the complexity of real-world challenges.