Rachel Trafford, a correspondent for the Immigration Advice Service, writes that Covid-19 has only increased inequalities for people with learning disabilities and autism. And argues that it is essential that advocates speak up.
Shaun Webster MBE has a thriving family life, works two jobs and the proud owner of an MBE for campaigning for the rights of people with disabilities. He also happens to have a learning disability Shaun said of his experiences during the first lockdown: “It affected me a lot… I was lonely and isolated. It was scary just to go and get the bus. I was terrified I'd lose my job.”
Shaun is just one of the approximately 14 million people living in the UK today with some form of disability, and one of the 4.5 million of the working-age adults. The arrival of the Coronavirus pandemic has prompted many wide-ranging curtailments on our lives over the last nine months. Webster said: “It felt like being punished.”
People with learning disabilities or have autism are at risk of being locked in and locked out
For people with learning disabilities and autism, the pandemic and extra powers conferred by the Coronavirus Act legislation have highlighted the level of multiple inequalities that persists in the UK and numerous breaches of human rights, including the right to life. The passage of the Act in just three days in March 2020, without parliamentary scrutiny caused outrage not only in the Commons but in broader society.
At its six month review in September, 150 organisations reproached the government for its removal of disabled people’s rights and called for their restoration, most notably through the scrapping of Care Act easements. The legislations powers to reallocate resources meant local councils could restrict or turn off their care package obligations under the Care Act for disabled citizens in their jurisdiction. It also restricts access to education support and loosens the safeguards for those in this group, who may be detained, for example, under the Mental Health Act or in any form of institution or unit.
Over two-thirds of people with a learning disability surveyed by charity Mencap, reported that their care package had been reduced since the start of the pandemic, leaving them stuck in lockdown with increasing support needs. Despite this, the Act passed once again in full.
People with learning disabilities and autism are in danger of being locked in and locked out once again, as a second lockdown has now come into force across England and stricter measures in Scotland and Wales. For tens of thousands of people with learning disabilities, the first already proved to be disproportionately fatal, with 60% of Covid deaths up to July being people with disabilities.
The release of this Office of National Statistics data did cause outrage. The Care Quality Commission also released more specific data on the effects felt on people with learning disabilities and/or autism in June, showing a 134% increase of all deaths from April to May when compared with 2019 data. This again only includes people recorded by a care provider and not those who live in their own homes.
Similar data from March to May was highlighted by Mencap to reveal a high proportion of people with learning disabilities were dying, at 45.4%, than in care homes at 31%. Gaps in data and lack of outcry only added further weight to the feelings of people with learning disabilities that they just are not considered or valued in the same way.
Addressing inequalities, and providing care and support
As the second winter wave of the virus is being reported and numbers of cases and hospitalisations rising across the country, much-needed focus on these impacts is being lost, especially amid the second lockdown. Just hours before it came into force, approximately two million ‘vulnerable’ people were being told once again to shield and given ‘stay at home at all times’ orders. Considerations for this group of citizens are repeatedly forgotten or come too late.
Government guidance for supported and independent living facilities was not released until August, six months into the pandemic. The Government's Winter Plan for Covid-19 from the Department of Health and Social Care, despite being informed by a Social Care Taskforce Group made almost no mention specifically of people with learning disabilities.
The plan called on local government to ‘address inequalities’ in care and support, but without any real muscle for enforcement. Without enough quality data in inform decisions in this area, as has been shown to be sorely lacking, local bodies are very restricted. Even now, nine months on from March, data is still not adequate in separating the devastating impact.
As welfare budgets were cut, local councils were barely able to meet their care obligations before Coronavirus and having to ration their support. Already in 2017, over half of disabled British adults said they could not get the social care support they needed. Changes to UK immigration law in 2021 mean that an already excessively stretched social care workforce will be hit hardest with staff shortages, as many key workers are from abroad. Most do not meet the salary requirement to qualify for the skilled worker visa to come to the UK.
People could now once again be completely cut off from their families, activities and support services, even as they had not nearly approached even pre-lockdown levels. Visits have been recently protected as ‘lawful’ to care homes by a senior judge for families challenging the second blanket ban as in March, stating his “concern about impact on elderly people of lockdowns”. The same alarm should be raised for those with learning disabilities.
Being out of sight should not mean out of mind
Self-advocacy for people with learning disabilities has never been more vital, to prevent their invisibility to authorities and the public. This is even more apparent when considering the experiences of those institutionalised, of which high numbers are those with a learning disability and/or autism. The CQC report ‘Out of sight – Who Cares?’ released in late October revealed the inhumane treatment and repeated abuse inflicted upon people with learning disabilities and autism in these settings through long-term seclusion and restraint.
Overall, the review concludes, people in community-based services were experiencing a better quality of life than those with ‘comparable complex needs’ in hospital settings and were subject to less restraint. Many people were only in hospital as they lacked the proper support in the community, leaving them to reach a crisis. Continued care assessments are also currently still suspended, which would typically ensure people can get discharged when they are ready not to prolong their stay with the proper support in place.
Despite the push to reduce numbers of people in hospital and facilities, targets have been repeatedly missed. There are still over 2000 people in assessment treatment units (ATU’s) or ‘inpatient care’ and over 3000 with learning disabilities in mental health hospitals.
Despite multiple scandals, and at least 40 deaths between the end of 2015 and 2018 exposed over two years ago, the cycle continues. Without adequately funding social care, to the tune of £7bn per year at least, especially in the context of the pandemic and legislation, the danger of more people with learning disabilities being funnelled into institutions, with a high risk of abuse is worryingly prevalent.
Being ‘out of sight’ in a second lockdown cannot mean out of mind. Twenty-five years this year after the passage of the first protective legislation for disabled people's rights, the Disability Discrimination Act, the voices of self-advocates and those they represent must be lifted up and platformed.
Gary Bourlet, a long-time advocate and co-founder of Learning Disability England, stated in a vlog the importance of this process. “When people with learning disabilities are seen and heard, instances of abuse and torture will go down. Society needs to see them for what they truly are; assets." As Gary passionately describes, for those voices that cannot be heard, we must continue to shout ever louder.