After nearly 2 months of living and working in lockdown, the different way in which we’re all living might feel like it is becoming the new normal. Many of us have had to adapt quickly to these changes, taking on new responsibilities and perhaps pausing things that are typically commonplace in our lives.
I am proud of how colleagues at Dimensions have risen to this challenge and the pace at which we have worked to keep the people we support safe, but I am also aware that this rapid change can bring unseen consequences and costs. It has brought home to me the importance of our organisational values: Ambition, Respect, Courage, Integrity and Partnership. These values have underpinned our response to the virus and have guided all of us through complicated decision making.
We are, of course, not alone in tackling unprecedented challenges. Right now the government is confronting the delicate task of containing the virus, whilst also seeking to ease the restrictions on people’s daily lives and to restart the economy. Most recently, this has resulted in changes to the restrictions in England and new guidelines on staying alert and social distancing.
Unfortunately, people who have a learning disability and autism are likely to be unfairly disadvantaged by this guidance.
The needs of people who have a learning disability and autism seem to be repeatedly absent in policy making. Whether you look at the early NICE guidelines on access to critical care, or the exclusion of care settings for people who have a learning disability and autism from the government’s enhanced care home testing measures, people who have these disabilities have been overlooked again and again in COVID-19 response. Indeed, we are only just starting to understand the extent of its impact on people who have a learning disability and autism in the published data on deaths.
I find this frustrating, not least because there are very clear rules about considering and meeting people’s needs. For example, the Equality Act 2010 makes it clear that reasonable adjustments should be made for people who have a disability so that they are not unduly disadvantaged. The need for such adjustments has been raised repeatedly – most recently we have written to the Minister for Care about making reasonable adjustments under the new social distancing guidance. In some cases changes have been made – early guidance on exercising was clarified to make sure people who have a learning disability and autism could leave their homes more than once a day where this was necessary to maintain health and wellbeing.
We know that reasonable adjustments can make a real difference in people’s lives. For example, over the past two years, through the #MyGPandMe campaign, we have worked with primary care to make sure more people have reasonable adjustments when they go to the doctor. These small changes, such as double appointment times, can mean people get the right care at the right time and have better health outcomes, closing significant health equality gaps.
Now more than ever is the time to adhere to the rules and principles we have put in place to uphold people’s rights. Coronavirus is fundamentally pushing the boundaries of how we can live and work, putting untold pressure on services and creating space in which people’s needs can be overlooked and set aside in the name of tackling the pandemic.
This is why we must be vigilant about the frameworks we have to guide our response. The Equality Act; Human Rights Act; and well established principles around consultation with those who have lived experience are not just there for when the sun is shining – they are there to make sure that, even in the most testing of times, we do not let people fall behind or become marginalised on the basis of disability or any other characteristic.
The virus has thrown many of the inequalities confronted by people who have a learning disability and autism in to stark relief – from misuse of DNAR orders to the endemic delay in providing information in accessible formats. These inequalities can only be remedied if people who have a learning disability and autism are involved in policy development.
It is my hope that the change we are calling for in current guidance will be introduced quickly. I also hope that, going forward, the government will consult with people who have lived experience and identify issues before they make changes, rather than waiting until after the fact. Due process to uphold rights and maintain equality is not a ‘nice to have’, it is fundamental to how government should pursue its aims and take action. Our collective response to the virus cannot come at the cost of losing hard won rights nor by-passing our values and principles.