There can never be one voice of people with learning disabilities.
People with learning disabilities are not a homogenous group, once you’ve met one person with a learning disability you have met one person with a learning disability. People with learning disabilities are unique individuals, just like everybody else.
Each individual you meet with a learning disability will have unique skills, strengths and abilities. Some people with learning disabilities sometimes need extra help to stay healthy, safe and have the best life they can. The level of support needed (if needed) will look different for each person.
The impact of COVID-19 has affected all groups in society and will continue to do so. The pandemic has continued to highlight the premature and avoidable deaths of people with learning disabilities and exacerbated the health inequalities and inequities experienced.
Discrimination in action or inaction
One of the first sets of guidance to demonstrate an inequitable approach was the inclusion of the frailty tool in the rapid NICE guidelines, leading to much anxiety and a thankfully successful challenge from people with learning disabilities, their families’ advocacy and professional groups.
Then came the visiting guidance, which meant people with learning disabilities who may need additional support to stay safe, comply with treatment and understand the procedures and interventions they might need could be greatly disadvantaged by not having a loved one, a key worker, or a specialist staff member who could support an admission to hospital.
A concern that has been evident since the start of the Covid response was the inappropriate application of DNACPR, currently making headlines again. Raising questions about how valued the lives of people with learning disabilities are.
Throughout the pandemic has been the challenge from people with learning disabilities about the lack of accessible information, the failure to use clear and simple messaging and an apparent afterthought about how to get messages out to those in society who require information in an adapted way, you know, by making reasonable adjustments (like the law says we must).
People with learning disabilities are dying disproportionately regardless of the level of cognitive impairment they have.
Evidence has consistently identified that people with learning disabilities are at greater risk of dying than the general population from Covid 19 regardless of the level of learning disability they have. See Office For National statistics the most recent report from Public Health England and in preliminary findings from the Scottish Learning Disability Observatory (subject to peer review) and we know a new LeDeR is on it’s way.
The ‘prioritisation’ of people with learning disabilities for the vaccine is highlighting many shortcomings in how records are kept of the level of ability a person might have and how their needs might be highlighted. A reliance on primary care coding to ensure that those with profound and severe learning disabilities are invited for the vaccine in group 6 is unreliable and causing concern. The complexity and volume of the codes means that people with learning disabilities are not able to safely be identified in this way, this has been recognised by many campaigners with the call to vaccinate all people with a learning disability. The public’s attention has been captured by the recent admission of DJ, Jo Whiley’s sister Frances to hospital and by Author Ian Rankin appealing for his son to be vaccinated. Self advocates Ciara Lawrence and Scott Watkin, among others have also campaigned and articulated the importance of vaccinating people with learning disabilities.
There have been news stories, recognition in parliament and front pages highlighting these issues. In the Twittersphere there has been some division. A frustration from those highlighting the ongoing inequality which leads to the likelihood of people with learning disabilities facing barriers to the acquisition of health, that there is a continued reference to the vulnerability of people with learning disabilities which reinforces stereotypes of the burden, the drain on the state, the eternal child etc. etc.
Valuable, Vulnerable: Vaccinate!
In 2015, the LD Professional Senate wrote that ‘it is clear that life is better today for most individuals and their families’ National LD Professional Senate report 2015. Many people with learning disabilities are able to live lives in places of their choosing with people who they want to be with and are able to manage their own affairs with little intrusion from services or supports.
It is an unfortunate truth that must be acknowledged, people with learning disabilities can be vulnerable because of the many barriers faced in society, for example: attitudinal, physical, technological or financial. In Covid times this has been more so, some people with a learning disability are likely to be especially vulnerable to the physical, mental and social effects of the pandemic. For those with cognitive impairment the challenge in receiving and understanding information that will protect them can mean relying on their family, carers, advocacy groups or professionals to be vigilant on their behalf. For others their family, carers, advocacy groups or professionals will have to speak on their behalf.
Much work has been taken forward over the years to reduce the impact of the negative perception and stereotyping of people with learning disabilities. It is unlikely that people welcome being described as vulnerable, in fact I read a lovely story last year about a child who had misunderstood the word vulnerable to mean valuable and this was how the people supporting him pledged to describe people in their care going forward. It is important that lessons are learned from the impact of COVID-19 on people with learning disabilities and their families.
Families, carers, professionals and advocates have shown repeatedly how they can work together, with people with learning disabilities in addressing these barriers. Highlighting each others shortcomings as only representing one demographic, one voice, does not move the conversation on, personal attacks alienate, in any case, it’s not kind.
Reducing health inequalities is within our reach and we not only have a moral duty to work together to do so but there is a legal responsibility that this is acknowledged and acted on too.