Mother Teresa once said, ‘Human rights are not a privilege conferred by government. They are every human being’s entitlement by virtue of his [her] humanity.’ Yet ever since COVID-19 reached the UK, it has seemed as if the rights of disabled people - and in particular those of people with a learning disability - have been at risk.
Little has been said by the government or the national media about the very complex and diverse needs of people with learning disabilities during the COVID-19 crisis. Then again, little was said about this group pre-pandemic either. People with learning disabilities, and their families, are one of the most isolated groups within society.
Rights at risk
It’s easy to be out of mind when you are already largely out of sight.
"Would a person with a learning disability know that their human rights have been breached? Would they have the resources to challenge a decision if they thought this was the case?"
The range and diversity of learning disability experience also means that it can be difficult for members of this group to identify with each other and to come together as one voice to demand that their rights be upheld.
People with learning disabilities are likely to face harm not just through COVID-19 itself, but through the general strain on the health and social care system, as well as through wider societal barriers and injustice.
Here in Wales, learning disability organisations have been holding the Welsh Government up to scrutiny on several issues to ensure that the rights of people with a learning disability continue to be upheld during the Coronavirus pandemic. After disturbing reports of blanket Do Not Resuscitate Orders (DNRs) being sent to people with a learning disability, such organisations have found themselves questioning whether even the very principles upon which the NHS were founded will remain intact.
It is shameful that reassurances have needed to be sought that should a person with a learning disability go into hospital as a result of contracting COVID-19 that their chances of benefiting from hospital treatment will not be influenced by how their life is valued by society.
Care Act 'eastments'
The Coronavirus Act is another area which could have serious implications for the rights of people with a learning disability. The legislation gives UK authorities emergency powers to tackle the COVID-19 pandemic and is to be reviewed every six months.
One of the Coronavirus Act’s most controversial measures is that it allows for the relaxation of the rules and standards for social care services and supports, otherwise known as ‘easements’ or ‘flexibilities'. This means that councils will no longer have a duty to assess if individuals and carers have needs for care and support, comply with care and support plans, or meet the needs of those assessed as eligible for care and support.
In Wales, the Act only applies to adult provision whereas in England children and young people are also affected.
This will essentially mean the suspension of the key provisions in Wales, outlined in the Social Services and Wellbeing Act (SSWBA) (2014), unless there is a need to protect an adult from abuse or neglect or a risk of abuse or neglect (Section 27).
Human rights are not a judgement call
The SSWBA, 2014 defines ‘abuse’ as ‘physical, sexual, psychological, emotional or financial abuse'. Neglect means a ‘failure to meet a person’s basic physical, emotional, social or psychological needs, which is likely to result in an impairment of the person’s wellbeing'.
Unlike the suspension of the Care Act (2014) duties in England, there is no requirement to avoid breaches of the European Convention on Human Rights - it really would be a judgement call as to whether or not a service is reduced or withdrawn and how would local authorities in Wales define terms such as ‘basic’ and ‘impairment’ in practice?
Of course, not referring to the European Convention on Human Rights wouldn’t stop a person from challenging a decision through such legislation. However, it might lead to inappropriate applications for easements which might not otherwise have occurred if decision-makers had been minded to consider people’s human rights.
In Wales, National Disability Umbrella Organisations have called on the Welsh Government to take action to ensure that no services are withdrawn without assessing to verify whether there would be a breach of human rights. While this is a positive first step towards protecting the lives of people with a learning disability, after years of underfunding of social care with a social care system at breaking point, how can we be sure that an appropriate assessment would take place? How would such an assessment take place in a time of self-isolation and social distancing?
If anything, since the COVID-19 pandemic, it seems that people with learning disabilities living in the community are having less, not more, contact with social workers, support workers, and carers.
'If the COVID-19 crisis has taught us anything it’s how quickly families’ circumstances can change'
It has been several months now since we last had contact with our family social worker and I know I am not alone in this. It has also been many weeks since we last had physical contact with our 17-year-old son, who has a learning disability, autism, epilepsy, and ADHD. His residential facility went into lockdown on the 13th March 2020.
If the COVID-19 crisis has taught us anything it’s how quickly families’ circumstances can change. Support needs may continue to alter, meaning that any assessment is likely to be time-limited. In such a context it would be incredibly difficult for people with learning disabilities and their families to challenge local authorities for failing to meet the need for care and support.
Would a person with a learning disability know that their human rights have been breached? Would they have the resources to challenge a decision if they thought this was the case?
Disintegrating support networks
The support networks of people with learning disabilities are breaking down, with people unable to see parents if either they or themselves are shielding, unable to see partners if they are not co-habiting, unable to see carers if the carer is unwell or having to care for their family members, unable to see friends and/or attend social groups and activities.
Children with learning disabilities are missing the familiar routine of school and respite, with families unable to get a break. The very reason why some people with learning disabilities appear to be at ‘low risk’ is because of these very support networks. Take the support away and they become ‘high risk'.
- See more: Learning Disability Today's 'Change It Up' campaign calls for accommodation, care, and mental health approaches to be designed to reflect the wishes of those with learning disabilities and/or autism themselves
- See more: A round-up of changes that will impact learning disability and/or autism support during the Coronavirus pandemic
Many people deemed at ‘low risk’ actually have considerable support needs. Years of austerity has set eligibility criteria for social care support at a very high threshold. People with learning disabilities, and their families, are more isolated than ever.
And that’s the irony. The neglect of people with learning disabilities has intensified during the Coronavirus pandemic as the government has shaped its response around the needs of the NHS without thought about social care. People with learning disabilities living in the community have been largely left to fend for themselves, forced to batten down the hatches, hoping that they will somehow survive the storm.
At a time when people with learning disabilities are needing more support than ever, it seems that their needs are being de-prioritised.
I fear that not all will survive the storm.