People with disabilities have been among the worst affected groups by the Covid-19 pandemic, according to the National Advocacy Services for People with Disabilities and the Patient Advocacy Service.

Two reports by the organisations show those with disabilities faced traumatising and life-changing experiences, including isolation, anxiety and depression.

The reports focus on the independent advocacy work carried out by NAS and the Patient Advocacy Service between March 2020 and March 2021.

The first report explains the issues faced by people with disabilities in 'residential services and day services' during the pandemic.

NAS statistics show that mental health and well-being was the biggest issue for people with disabilities receiving the service's support.

Issues included 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.

The report says that the 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. Carers also spoke of the exhaustion and anxiety they felt.

When combined with reductions in other public services, including transport, education, housing support and limited access to technology, this led to a major increase in mental health concerns for people with disabilities.

'I wasn't able to meet anyone'

Simon, who has an intellectual disability, lived in a residential service before the pandemic.

He enjoyed a busy, independent life and would take public transport to meet friends and family for coffee and lunch. He also attended day service five days a week, which he really enjoyed.

He said his life was badly affected by the pandemic, and that he struggled with the restrictions.

"I wasn't able to meet with anyone and my day service was reduced to one hour of outreach per week because I was living in a residential service. Later on, I became aware that other people were returning to day service, and I felt it was unfair that I couldn't attend too."

Through help from the National Advocacy Service, he wrote a letter to his day service manager explaining how he felt and that he wanted to return to day service on a part-time basis.

A meeting was arranged with the day service manager, and it was agreed that he would take part in outreach and day service for a set period of time per week.

The report notes that in residential services, transport was only used for medical appointments.

For those in the community attending day services, transport provided by service providers was limited due to social distancing and infection control guidelines.

People were reliant on family members to transport them to and from day services. This was not possible for many families.

Concerns were raised to the NAS about infection control measures by 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.

While some respite services operated on reduced capacity, many closed completely, leaving people with disabilities without a service.

The report says this had a major impact on people who were unable to access the services and for their families and carers who have spoken about their feelings of exhaustion and isolation in providing full-time care during this time.

Decision-making and access to justice

The second report published today relates to access to justice and decision-making.

The National Advocacy Service found that the lack of inclusion of people with disabilities in making decisions made about their own lives was exacerbated during the pandemic.

NAS says its advocates helped to ensure the "will and preference" of people was upheld when making decisions about consenting to the Covid-19 vaccine.

It notes concern that some family members were making decisions on behalf of the person with a disability and people in nursing homes, despite having no legal authority to do so.

'I got the vaccine which was my decision'

John lives in a residential service and has a learning disability. He communicates through gestures.

He was was offered the Covid-19 vaccination and staff in his residential service tried to find out if he should be given it.

John says that instead of identifying how they could communicate with him directly to learn his view, they spoke with his family to ask for their consent.

"My family did not want me to receive the vaccination", he said.

The residential service staff decided to contact National Advocacy Service to identify how they could communicate with John more effectively.

The NAS advocate explained that John's will and preference should be taken into account in the decision-making process.

He was given a guide to ensure his views were listened to when making decisions about the vaccine and if he wanted to take it.

"I got the vaccine which was my decision. The residential service changed how they approach getting a person's views about the vaccination. They have also committed to reviewing their policy around other decisions such as money management.", he said.

The report on decision-making says there were also cases of Do Not Attempt Resuscitation (DNARs) orders in hospitals and nursing homes, when no attempt was made to ascertain a person's own views and wishes, and family members were asked to make decisions on their behalf.

A recommendation in the report is that the Irish Government ensures the Assisted Decision-Making Act 2015 is commenced and the Decision Support Service fully established.

"Matters such as a person's capacity to make decisions, or give their informed consent are of paramount importance, and the human rights of the person must be at the centre of these processes", it says.