Anxiety. I always feel like I’m on edge. COVID, cost of living crisis, finances, current living arrangement. The majority don’t seem to care about COVID anymore and you can’t just ignore it, people are still dying from it.
Cara, whose name has been changed, described these concerns in our research into the continuing effects of the pandemic on people with intellectual disabilities. Her account shows how concerns about infection became entangled with uncertainty about everyday life.
The UK COVID-19 Inquiry’s care sector report, published on October 20 2026, focuses on how to improve support before another emergency. For people with intellectual disabilities, known as learning disabilities in the UK, that requires attention to how people live and the different kinds of support they need and receive.
The report’s first recommendation calls for pandemic planning at government, local and provider levels. But the formal recommendations are framed mainly in relation to care homes for older people and leave important details unspecified about how those plans should meet the needs of people with intellectual disabilities.
Our expert report to the inquiry, developed with input from people with intellectual disabilities and families, proposed more explicit commitments. These provide a starting point for addressing those gaps.
Protecting support for everyday life
People with intellectual disabilities have varied support needs. Our expert report describes most provision extends beyond residential care, including support for people living with family or in their own homes. Planning must also consider the services that help people participate in their communities.
Our study following adults through the pandemic found that access to day services had not returned to pre-pandemic levels by late 2022. Among adults interviewed directly, 37% had reported regularly attending before the pandemic; 26% were using some form of day service in the final research round.
These figures indicate why lifting restrictions did not necessarily restore people’s opportunities.
In our in-depth interviews, participants described losing independence and activities that were important to them. Future planning needs to address those consequences alongside infection control.
The inquiry’s first recommendation does not explicitly require protection of day services or community participation. In our expert report, we recommended planning to increase support during emergencies, while protecting access to community activities. Governments should explain how their response will achieve this.
Making health protection accessible
Public health advice is useful only if people can understand it and act on it.
Our expert recommendations called for information suitable for people with intellectual disabilities to be available at the same time as information for the general public. We also recommended prioritising the social care support people need to access healthcare, including vaccination.
The inquiry’s third recommendation requires accessible information about financial support schemes for care workers and providers. Its formal recommendations do not make an equivalent, explicit commitment to timely, accessible public health information for people with intellectual disabilities and their families.
Governments should build that requirement into pandemic plans. People with intellectual disabilities should help develop and test guidance before an emergency, with arrangements for updating it as advice changes.
Plans should also explain how people will receive practical help to follow that guidance or attend healthcare appointments. Publishing accessible advice cannot, by itself, resolve the loss of someone’s usual support.
Recognising intensive support needs
Families of people with profound and multiple intellectual disabilities described particularly difficult experiences in our research into their lives during the pandemic. They reported difficulties obtaining healthcare and support, alongside exhaustion and anxiety about the future.
The inquiry documents the loss of respite care and its consequences for unpaid carers. Yet its eight formal recommendations contain no dedicated requirement to maintain respite or other support for unpaid carers, or provide replacement care if a family carer becomes ill.
For people with profound and multiple intellectual disabilities, replacement support must be appropriate to their individual needs. Emergency arrangements should explain how someone’s care will continue if the people who usually support them become unavailable.
Our expert report recommended prioritising these individuals and their carers. Governments should make that priority explicit when implementing the inquiry’s planning recommendation, with resources to sustain support.
Including people outside existing services
Another gap concerns adults with intellectual disabilities who do not qualify for social care.
Our expert report called for better understanding of their lives and how their needs might increase during an emergency. Planning around existing social care recipients alone risks missing this large group.
Councils should work with people with intellectual disabilities and local organisations to establish accessible ways to seek help when circumstances change.
The How We Survive and Thrive commission, organised by Learning Disability England, has developed similar recommendations about maintaining support and involving people in decisions.
As governments implement the inquiry’s findings, people with intellectual disabilities and their families should help judge whether the resulting plans address their needs. Those plans must explain how support will remain available across different living arrangements, including for people who were managing without formal services before an emergency began.