Disabled people have been particularly disadvantaged during the coronavirus pandemic. A recent report by Public Health England (PHE) highlighted that people with learning disabilities were over six times more likely to die of COVID19 than the general population, rising to 30 times more likely for people aged 18-34.
Whilst this extraordinarily high death rate for people with learning disabilities during the first wave of the pandemic was widely reported, the more mundane impacts on disabled people’s lives have been less well understood or documented. These impacts include things like isolation and loneliness stemming from the withdrawal of support services, the closure of day centres and support groups, Care Act easements, confusing rules about risk assessments for disabled employers of personal assistants, and conflicting information about who can visit disabled people living in care homes or supported living placements.
During the pandemic, laws and rules have changed rapidly. In the six week period from mid-September to the beginning of November 2020, coronavirus regulations in England were changed six times. Keeping up with these changing rules is difficult for everyone, but is especially challenging for people with learning disabilities and other cognitive impairments, like acquired brain injuries or dementia. Coronavirus regulations are (necessarily) written in technical legal language, and until recently the regulations were not published in advance of coming into force. Official government guidance that accompanies the regulations is often also lengthy and complex and is therefore inaccessible to people with learning disabilities.
The UK ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) on 8 June 2009. Ratification of an international treaty, like the CRPD, means that a State agrees to be bound by its provisions. Article 9 of the CRPD requires States Parties to “take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, … to information and communication”. Unfortunately, the UK Government do not routinely publish easy read or simplified versions of their coronavirus guidance, nor do they link to easy read resources made by charities and other third parties from the official government information. This means that many people, including some of those who are at the highest risk of death from COVID-19, do not have access to information about the rules about what they can and cannot do.
November 2020 marked a quarter of a century since the Disability Discrimination Act 1995, the first piece of disability rights legislation in the UK, came into force. While that law, and its successor, the Equality Act 2010 have undoubtedly improved physical accessibility for disabled people, accessibility of information remains more of an aspiration than a reality. Many will recall that sign language interpretation of the UK Government daily coronavirus briefings was not provided until after a legal challenge, social media campaign and formal petition were launched by Deaf campaigners during the first lockdown.
Legal duties to provide accessible information are not a new idea. Health and social care services have had a legal duty to follow the Accessible Information Standard since 2016. This means that all organisations that provide NHS care or publicly funded adult social care are required to provide information in a way that meets the needs of their service users. This approach to accessible information could and should be expanded to cover (at least) all forms of publicly-funded information and guidance during the coronavirus pandemic and beyond.
Research led by Professor Rosie Harding in Birmingham Law School and funded by the British Academy, the Leverhulme Trust, and the University of Birmingham ESRC IAA has focused on how to support disabled people to access complex legal information. That research, which has included interviews with disabled people and care professionals, found that a lack of support with understanding relevant information is a key barrier to accessibility for people with learning disabilities and other cognitive impairments. Supporting disabled people to access coronavirus guidance, through established means like video explainers, large print, plain language and easy read information would significantly improve access to that information for disabled people.
The CLARiTY project is a new collaboration between Birmingham Law School, Wolferstans Solicitors, and Bringing Us Together. The CLARiTY project aims to improve access to justice for disabled people and family carers by offering free, accessible, information about capacity law and rights during the coronavirus pandemic. Funded by the University of Birmingham ESRC IAA, the team are running a series of free, interactive, zoom meetings for disabled people and family carers about legal issues that arise during the pandemic. These range from understanding the lockdown rules, visiting restrictions in care homes and hospitals through to information about supported decision-making, powers of attorney, and challenging Care Act decisions. A summary of what was discussed at each session is then shared online in plain language and easy read formats, increasing accessibility of legal information.