Lockdown and Communication Changes are Leaving Many Disabled People Behind

Autistic people and those with learning disabilities continue to face reduced access to essential services and supports

It is well documented that autistic people and those with learning disabilities already suffer from disproportionately higher rates of physical and mental health problems than the general population, and have long faced difficulties accessing appropriate services. Sadly, it is now abundantly clear that the pandemic and associated restrictions have also had a disproportionate impact on disabled people, further entrenching these difficulties.

“A review by Mencap titled ‘The devastating impact of lockdown’ highlights that 7 in 10 people with a learning disability had their social care provision cut or reduced, and 4 in 5 family carers had no choice but to take on more unpaid caring responsibilities for their family member.”

Public services were already under massive pressure prior to the pandemic. Unfortunately, most disabled people report that the services they had previously received completely stopped during lockdown. Many autistic people and people with learning disabilities have been left entirely alone during lockdowns, and denied visits from loved ones in care homes for months. Autistic people and those with learning disabilities highlight that the shift to online service provision is leaving many people out, further exacerbating poor mental and physical health.

Over the past two years, many have argued that coronavirus restrictions imposed by the government were there to ‘protect the vulnerable’. However, this neglects the very real, long-lasting harms inflicted upon those same people by lockdowns. Restrictions are disproportionately impacting disabled people and autistic people; increasing anxiety and loneliness, and impeding access to healthcare. Autistic people and people with learning disabilities have been excluded by constantly changing government guidance, which has left many confused and isolated, unsure about what is guidance and what is law. In some instances, people have been fearful to go outside due to a genuine concern that they might be arrested. Families have looked on helplessly as their loved ones lost hard-earned skills and independence. A review by Mencap titled ‘The devastating impact of lockdown’ highlights that 7 in 10 people with a learning disability had their social care provision cut or reduced, and 4 in 5 family carers had no choice but to take on more unpaid caring responsibilities for their family member. In addition, Mencap’s report found that local council spending on supporting people with learning disabilities has been declining in recent years.

ONS data in July 2020 highlighted the impact of the first lockdown on disabled people. People with learning disabilities, mental health problems, or memory impairments were most concerned about the impact of coronavirus on their well-being. Compared to just 3% of non-disabled people, 13% of disabled people reported being concerned about access to healthcare, with 25% only receiving medical treatment for some of their conditions during lockdown. Disabled people reported worsened mental health (46% disabled, 18% non-disabled), increased loneliness (42% vs 29%), and having no one to talk to about their worries (17% vs 10%). Unfortunately, recent ONS data (Feb 2021) shows that many of these concerns have grown.

Many services that had been halted for disabled people either remain closed or only partially reinstated and must be urgently resumed.

A BBC investigation by Ruth Clegg provides a harrowing account of the struggle faced by Josselin’s parents – Josselin has hearing loss and a visual impairment, is unable to walk or talk, and is fed through a tube. The services that her family relied upon before lockdown were all halted in March 2020, including speech and language therapy, physiotherapy, and occupational therapy. To highlight the disparities in care for disabled people – whilst Josselin’s last eye test was ‘conducted’ over the phone, after Josselin’s dad became unwell with coronavirus, he immediately received a range of services, including occupational and physiotherapy.

A colleague working in inpatient mental health during the first lockdown shared (anonymous) heartbreaking accounts of patients, all impacted by lockdowns, and in many cases, leading to their re-admittance – T.L., an inpatient admitted informally due to concerns about their safety had been diagnosed with terminal cancer, and was also grieving the death of his wife. His admission was triggered by social isolation – living alone in lockdown isolated him further from his family, and he was significantly distressed by the reality that, with his terminal diagnosis, he was unable to live his remaining days in the way he had wished.

My research has focused on how service providers can adapt their communication with autistic people, ensuring that this research is put into practice in the healthcare sector. I have also written previously on my concerns about the effect of lockdown on the most vulnerable, and how future restrictions (that since came to pass) will only further marginalise the most vulnerable and excluded in society. Apart from the clear, urgent need to reflect on the significant long-term harms caused by lockdown policy choices, we must accept that some people have been left behind and that we need to act now to remedy this. Many services that had been halted for disabled people either remain closed or only partially restarted, and must be urgently resumed. People may need support to get back into the routine of accessing these vital services. In addition, if service providers are going to change their communication methods, such as relying more on online services, a real alternative has to be provided for those who need it. For some people, reliance on online services will push them out of healthcare, just as the pre-covid reliance on telephone communication to access GP appointments also created a barrier to healthcare for many. We should take learning about individual differences in communication needs forward to ensure that services are genuinely inclusive, offering a range of access options – for example, online and telephone appointment booking systems, followed by the option to have an in-person or remote appointment, based on individually-expressed need. Of course, this is a monumental challenge in a system where capacity is at breaking point – a topic for another article.

Dr Jade Norris is a Senior Research Associate in Autism Research at Bristol Medical School – Population Health Sciences

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