People with learning disabilities 'living a nightmare'

Some families of people with learning disabilities are living a "nightmare each and every day".

That is according to evidence in a new study from Ulster University (UU) into the impact of Covid-19 on people with learning disabilities.

Support services for people with learning disabilities "disappeared or were markedly reduced" during the first year of the Covid-19 pandemic.

They have not returned to pre-pandemic levels, according to the report.

Only 5% of almost 200 people with learning disabilities or their families who contributed to the study said their lives had got back to normal.

Peggy and Seamus McKenna recently told BBC News NI their 52-year daughter Orla had not been able to visit them at home for 20 months.

Other families have previously said their children had regressed and struggled to cope due to the withdrawal of day centre and respite services.

Some MLAs have also said that carers for children and adults with disabilities had been left in "fear, desperation and despair" over the withdrawal of services.

The study comes as a respite centre for disabled children in Londonderry is to temporarily close for up to three months.

Rosebud Cottages in Derry was closing to deal with "current challenges", the Western Health Trust said.

The UU study is part of a UK-wide research project on the effect of the Covid-19 pandemic on people with learning disabilities.

It was carried out by Prof Laurence Taggart, Prof Roy McConkey and Dr Peter Mulhall from UU in conjunction with Compass Advocacy Network, Mencap NI and Positive Futures.

They carried out 127 interviews with people with moderate learning disabilities in Northern Ireland in December 2020, April 2021 and August 2021.

More than 60 carers of people with more severe or profound learning disabilities completed detailed questionnaires on those dates.

There was emotional testimony at Stormont on Friday afternoon during the inaugural sitting of the Disabled People's Parliament.

One speaker, Amanda Paul, recounted what a consultant had said to her in hospital after she became seriously ill with septicaemia.

"The consultant talked back and forward to his staff explaining why I was in," she said.

"The consultant then addressed me and in his words I quote directly: "Due to your disability and your weight if things go south from here I see no point in pummelling your chest, I think it's best we put a DNR (Do Not Resuscitate order) on you".

"He turned around, said 'thank you' and walked away.

"I was left reeling that someone could pronounce a death sentence on me without discussion or recourse - I was in tears wondering if I was going to die.

"Is this the value of a disabled person's life?"

Joe Kenny, who is blind, said that little thought was given to people like him when it came to safety measures during the pandemic.

"As things would develop then as we know into one-way systems and arrows to tell people what to do and when to do it, all of which is very visual, very inaccessible to people who are blind, I was sort of locked out of certain aspects of society," he said.

"Only through the kindness and generosity of others could I then participate, which is a very strange feeling."

Mr Kenny also said a doctor had asked him over the phone to take a photograph of his son's eye when his son needed treatment.

"I find it just incredible that medical care and health care had been reduced to this - blind people trying to take a photo of a child's eye in order to achieve a diagnosis from a GP."

The Disabled People's Parliament took place on International Day of People with Disabilities.

People with learning disabilities were more affected than other citizens in Northern Ireland by Covid-19 and by the actions taken by government and statutory services, says the report.

"They continue to experience many restrictions in accessing health and social care supports," says the report.

"Many family carers were left unsupported for many months with the sudden closure of day centres and respite services.

"Where services have resumed, they are not getting the same level of support they had before the pandemic."

One family quoted in the report said their 51-year-old daughter was "living her own nightmare each and every day".

"Our daughter no longer has access to her outside world," they said.

"The bus doesn't arrive anymore to take her to the day centre she attended five days a week.

"The special place she went to be with her friends and the staff who taught her so much and were such an important part of her little life.

"Instead, she mostly spends every day now fully vaccinated in a room looking at the TV with other residents and trying to understand why they've been forgotten."

Children and adults with "marked learning disabilities" form about 1% of the Northern Ireland population, according to the report - some 18,000 people in all.

Most live with family carers but sizable numbers live in group-living schemes, residential care and nursing homes.

Many work or are in education or training but attendance at day centres is the dominant form of provision for them.

One adult told researchers: "Gateway club has stopped, church has stopped, my sister is not allowed into the supported living scheme to visit me.

"I am not allowed to go out for a walk with my sister."

The report said that services for and social lives of people with learning disabilities "were severely restricted during Covid-19 and have yet to fully recover".

"During 2020, 70% of people living in supported accommodation or residential care were not allowed by service providers to have visitors into their home," the study said.

"This was also the case for 20% of people living with families or in their own accommodation.

"Two-thirds of persons with severe or profound learning disabilities were reported by carers to have reacted negatively to visitor restrictions: isolation, boredom, frustration, and confusion about why things had changed.

"Over 60% of people with a milder learning disability no longer took part in any community activities (eg community groups, shopping, cafes) in 2020 but this rose to 85% for those with more severe disabilities."

The report also said that people with learning disabilities were more at risk from Covid-19 but their access to healthcare had reduced.

"People with learning disabilities contracted Covid-19 at a younger age, developed more severe symptoms and were at greater risk of hospitalisation with a higher mortality rate compared to the general population," it said.

"Around one quarter of persons had planned medical tests or hospital appointments cancelled in 2020.

"The physical health and emotional wellbeing of people with a learning disability has not improved as restrictions have lifted."

The report concluded that more action is needed by government to address two immediate risks: further curtailment of health and social care services due to winter pressures in health services, and the difficulties in recruiting and retaining social care staff.