What the research was about?

Cordis Bright was commissioned by Mencap to conduct a qualitative research study exploring the additional and unavoidable costs faced by people with learning disabilities. The study aimed to fill an evidence gap in UK policy discourse, and offers new insights into how Personal Independence Payment (PIP) supports, yet often falls short of, meeting the financial needs of people with learning disabilities.

Why this research is important?

This research arrives at a pivotal moment, as the Government considers changes to PIP that could have far-reaching impacts on disabled people. Our findings underscore the broad and essential nature of the unavoidable and extra costs of living with a learning disability, from specialist food and clothing to transport, therapies, and sensory equipment, and highlight how reducing or withdrawing support like PIP could undermine independence, wellbeing, and dignity.

Our inclusive approach

Inclusivity was central to our methodology. We undertook 15 in-depth interviews with people with learning disabilities and/or their families and carers. We used Easy Read materials and flexible interview formats to support accessibility, and adapted our approach to interviews based on participants’ individual needs and preferences. Our ethical and inclusive approach was designed in partnership with Mencap, ensuring participants felt respected, understood, and empowered to share their experiences.

What we found

The participants in our study experience wide-ranging and unavoidable extra costs related to health, wellbeing, home life, and social participation. Key findings include:

• Essential costs: Participants face significant recurring expenses on food tailored to sensory or dietary needs, clothing, medication, home adaptations, energy bills, and specialist equipment.
• Under-recognised impact of PIP: While PIP is experienced as a financial lifeline, it rarely covers the full spectrum of extra costs. Individuals and families can be left to make difficult trade-offs, sometimes cutting essential items or facing financial strain.
• Barriers to accessing support: The PIP application and reassessment processes were described as confusing, stressful, and not adapted to the needs of people with learning disabilities, particularly those without advocacy.
• Concerns about reform: Participants expressed fear that upcoming changes could lead to the loss of vital financial support, increased reliance on unpaid care, and significant deterioration in mental and physical health.

Our research calls for a person-centred, evidence-based approach to welfare reform that listens to and reflects the realities of people with learning disabilities. Mencap is using the research to inform their work to influence government policy in this area.

Find out more

Full report on extra costs of learning disability

Easy read report on extra costs of learning disability

To learn more about this research or explore how Cordis Bright can support you with inclusive, impactful research and evaluation, please get in touch by emailing Bethan Peach.