People with disabilities faced ‘traumatising, life-changing experiences’ in pandemic

People with disabilities have faced “traumatising and life changing experiences” such as isolation, anxiety and depression during the pandemic, according to new reports.

Mental health has been the biggest issue during the Covid period for people with disabilities who are supported by the National Advocacy Services for People with Disabilities (NAS) and the Patient Advocacy Service, according to the reports.

Moreover, their views about their lives have often been overlooked by services providing their care, according to the reports, titled Advocacy Matters: Advocating for People during the Covid-19 Pandemic and developed by the two organisations.

The reports address issues faced by people with disabilities in residential services and day services during the pandemic and their “access to justice and decision making” during this period.

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Key findings include “poor communication of public health guidance to people with disabilities living in residential services, visiting restrictions in residential services, and the withdrawal of day services.”

Some people who spoke to NAS advocates also said they “faced prolonged periods without direct contact with their family and loved ones, and they spoke of feeling fearful, anxious and alone”.

Closure and reduction of day services “had a serious impact on the mental health of people with disabilities, their families and carers. People lost access to the social interaction, structure and the routine they required, leading to isolation, anxiety and a loss of confidence and skills”, the reports found.

In residential services “transport was only used for medical appointments. It was not permitted for social outings, which had a detrimental impact on the wellbeing and quality of life for people living in residential services”.

A risk that the views of people with disabilities were being disregarded “increased considerably when it came to making decisions about key issues affecting their lives, such as their finances or whether they wish to receive a Covid-19 vaccination,” it was found.

An example given was a man who lives in a residential service. He has a learning disability and also communicates through gestures. When staff at the centre tried to find out if he should be given the Covid-19 vaccination they contacted his family to ask for their consent. They refused it, according to the reports.

Staff then contacted NAS to see how they might communicate with the man more directly. Via video-link, due to restrictions, a NAS advocate provided a guide to establish what he wanted, and he decided to take the vaccine, the reports said.

There were also cases of do-not-attempt-resuscitation orders in hospitals and nursing homes, when no attempt was made to ascertain a person’s own wishes and family members were asked to make such decisions on their behalf, the reports said.

NAS has adapted its services to ensure it can continue to advocate for people with disabilities through video calls, emailing and text messaging.

Today’s reports highlight concerns about infection-control measures involving people with disabilities living in congregated settings. Some services “had large numbers of people living in close proximity and the needs of some residents meant it was not always possible to practice social distancing.”

Among key recommendations in the reports are that “a human rights-based approach should be the focus of any plans or strategies that are developed for people with disabilities.”

It was “crucial that the rights and freedoms of people living in residential services are upheld and restrictions on family visits are lifted” and that residential services “be innovative and to do their utmost to support people to maintain contact and links with family and loved ones, utilising technolog”.

There should also be “a move away from group-based activities for people with disabilities to a more person-centred service delivery” and “vital that the restrictions preventing people from accessing day services are removed”.