Lessons of COVID still not learned for people with learning disabilities, warns report

People with learning disabilities were often ignored during the Covid-19 pandemic and must be explicitly recognised as a priority group in future public health emergencies, according to a new report led by people with learning disabilities and their family carers alongside the University of Birmingham and Manchester Met.

The call comes as the UK Covid-19 Inquiry publishes its Module 6 report examining the impact of the pandemic on the adult social care sector, including care homes, home care and unpaid carers.

Richard Hastings, Professor of Psychology, Health and Social Care at the University of Birmingham and Director of the Intellectual Disabilities Research Institute (IDRIS) and Chris Hatton, Professor of Social Care at Manchester Met, provided expert evidence to the Inquiry, drawing on extensive research into the experiences and outcomes of people with learning disabilities and their family carers during the pandemic.

Despite this, mentions of adults with learning disabilities seem to be missing from the Module 6 report, once again showcasing that this group and the important learnings surrounding their experiences during the pandemic have been ignored.

Professor Hastings said: “The lives and experiences of adults with learning disabilities and their families during the COVID-19 pandemic are the missing voices in the latest UK COVID-19 Inquiry Care Module report. The expert report that Professor Chris Hatton and I authored for the inquiry suggested that people with learning disabilities were an afterthought during the pandemic. They are now barely a footnote in the inquiry’s Care module report.

“Our recommendation is that people with learning disabilities should be proactively recognised as a priority group in all recommendations and future planning. Families, especially of individuals with profound learning disabilities, were clear that they were abandoned during the COVID-pandemic. That cannot happen again.”

Research and expertise from Professor Hastings and Professor Hatton informed Learning Disability England’s How We Survive and Thrive, published to coincide with the Inquiry’s report and written by a group of commissioners with learning disabilities and their family carers.

Drawing on personal experiences of isolation and inequalities during the pandemic, the report highlights disruption to essential support, barriers to healthcare, prolonged isolation and the loss of opportunities to participate in community life.

It underlines how pandemic policies often focused on care homes - despite many people with learning disabilities receiving support in family homes, supported living settings and local communities – and warns that people with learning disabilities were too often overlooked, despite facing some of its most significant consequences.

One family carer told the commission they lived with the constant fear that if they died, "no one would notice" and the person they cared for would be left without support. Others described feeling "isolated, cut off and forgotten about" as services closed and support networks disappeared.

The commission's report sets out a series of recommendations aimed at ensuring people with learning disabilities are not left behind in future crises. These include:

• recognising people with learning disabilities as a priority group in emergency planning;
• involving people with learning disabilities and family carers directly in shaping policy and preparedness plans;
• maintaining and, where necessary, increasing social care and community support during emergencies rather than reducing it;
• ensuring accessible information is available from the outset through formats such as Easy Read and video;
• strengthening support for family carers and unpaid carers;
• protecting community services, advocacy organisations and opportunities for social participation;
• improving digital inclusion and access to technology; and
• collecting better data to identify inequalities and respond more effectively during future emergencies.

Professor Hatton said: “During the pandemic social care services failed many people with learning disabilities and the commissioners of How We Survive and Thrive are living proof of this. They reported feeling bored, depressed, isolated and “heartbroken” due to support not being in place for the social care services working with them.

“Despite the extensive expert witness evidence Prof Hastings and I provided, it is disappointing to see that the Inquiry report focuses almost exclusively on residential care homes for older people and does not speak to the vast majority of adults with learning disabilities.

“We must stop ignoring people and finally learn lessons from their experiences. 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.”

Access an easy read version of Learning Disabilities England’s How We Survive and Thrive: Survive and Thrive Easy Read