People with learning disabilities were failed during the pandemic - and by the Covid inquiry

For the million adults with learning disabilities like Eric in the UK, the Covid pandemic casts a long shadow. 

During the Covid pandemic social care services failed many people with learning disabilities, and those services were themselves failed by the state in providing them with what they needed to effectively help. 

Along with Professor Richard Hastings at the University of Birmingham, I gave evidence to the Inquiry, presenting extensive research into the experience of people with learning disabilities during the pandemic. 

We found over half of adults with learning disabilities felt lonely, fewer had paid or volunteering jobs, and the number accessing day services or community activities plummeted.

One research participant told us: “During the lockdown I was at home, I was bored, I was depressed. I was struggling to just maintain my physical and mental health. It was really challenging. And I felt like all the activities, all the social life I had, that was taken away from me. And I was really, really, really heartbroken.”

We also know that people with learning disabilities were much more likely to die of Covid-19 at much younger ages, yet were less likely to get health treatment. 

From my research and publicly available data it is clear that plans were not in place for social care services working with people with learning disabilities, particularly for those working with the majority living outside of care homes. 

Personal protective equipment for support workers and for family members was hard to find, government guidance was absent and confusing when it arrived, and there was little support for zero-hours workers to take paid leave if they had Covid.

As one of the expert witnesses providing evidence to Module 6 of the UK Covid-19 Inquiry, I am extremely disappointed in its report and recommendations for the care sector. The report focusses almost exclusively on residential care homes for older people and does not speak to the vast majority of adults with learning disabilities getting social care who are of working age and do not live in care homes.

Heightened inequalities

Researchers and community organisations across the UK, led by me and Richard, tracked the experiences of almost 1,000 adults with learning disabilities through two years of the Covid pandemic. 

Ten years of austerity had already put social care services for people with learning disabilities under serious pressure. When the pandemic hit, these inequalities got a lot worse. 

Social workers, day services, support for community activities, and contact from a lot of health professionals disappeared for many people. Two years on they had not returned to pre-pandemic levels. 

People living in supported living or residential care homes were often kept in isolation, with no visits allowed from family. People with profound and multiple learning disabilities were hit particularly hard, with families often left to struggle alone.

Accessible information and guidance from the government was lacking, with community organisations scrambling to fill the vacuum. 

Unsurprisingly, many people with learning disabilities felt the impact of the pandemic on their physical and mental health. In some cases the absence of therapies such as postural care had irreversible consequences. 

The internet was a lifeline for many people to stay in contact with family and friends. Digital devices were also used to enjoy online activities put on by self-advocacy organisations and day services.

Sadly, the report reflects the inequalities that people with learning disabilities and their families experienced before, during and after the Covid-19 pandemic. 

Rather than tackling these inequalities, the recommendations mean that people with learning disabilities will continue to be ignored in planning for a future pandemic.

Preparing for the next pandemic

What should we do to be ready for a future pandemic? A commission of people with learning disabilities and their family members, supported by me and organised by Learning Disability England, have been looking at this question in a project called ‘How We Survive and Thrive’. 

The commission’s recommendations include:

1. Keep support in place during a crisis. National governments and local social care services need to work out in advance how they will keep supporting people and families in a pandemic or other emergency. The important things in people’s lives like relationships, meaningful activity, work, and opportunities to contribute, need to be central to this support.
2. Many adults with learning disabilities are not eligible for social care but are likely to need some support during a pandemic – plans need to be in place to find out who people are and what support they need.
3. During a pandemic or emergency, organisations need to able to produce accessible information in multiple formats quickly. Having procedures up and running to co-produce these with relevant communities will be crucial in producing information that people can trust.
4. Pandemic and emergency responses are much more likely to be helpful if people with learning disabilities have a meaningful influence on these responses. This requires national and local government and other organisations to set up meaningful channels now. 
5. Pandemic plans need to pay particular attention to people with profound and multiple learning disabilities, and other groups who may be less likely to get helpful support.

The next pandemic or national emergency is not a question of if, but when. If we fail to act, people with learning disabilities will once again pay the highest price. 

If we get it right, we can build a more resilient, inclusive and compassionate system that protects people's rights, wellbeing and participation in their communities, even in times of crisis. 

Chris Hatton is professor of social care at Manchester Metropolitan University