The lives of adults with learning disabilities and their carers are still a long way from returning to normal despite COVID-19 restrictions lifting, according to a major study tracking their experiences during the pandemic.
The research found that over half of adults with learning disabilities remain worried to leave the house and more than one in five with profound and multiple learning disabilities are still shielding.
The level of support received has also not returned to pre-pandemic levels. One in five adults with learning disabilities say they are getting less support now than before, with almost half of carers reporting the same thing. Many are now paying for some services out of their own pocket.
The pandemic is having a prolonged impact on carers too, with a majority of family carers and support staff reporting disturbed sleep, high stress, and tiredness as a result of their caring responsibilities. Many are unsure when the life of the person they care for will return to what it was.
The research, led by Manchester Metropolitan University and the University of Warwick, was conducted with over 750 people in the UK. Researchers interviewed 489 adults with learning disabilities (known as Cohort 1) and family carers and support staff from a further 280 adults with learning disabilities who could not take part in an interview themselves (known as Cohort 2).
The findings reveal that many are still living restricted lives despite overwhelmingly doing their bit to help control the pandemic. Most adults with learning disabilities are still wearing masks in public, more than nine out of 10 have had both doses of the COVID-19 vaccine, and the same again are willing to receive a booster vaccine.
Professor Chris Hatton, Co-lead Researcher and Professor in Social Care at Manchester Metropolitan University said: “These findings highlight how important it is that the experiences of people with learning disabilities are listened to. While they and their carers have been playing their part in keeping themselves and other people safe, many people’s lives are still highly restricted with no sign of this getting better.
“The blanket lifting of restrictions has brought new freedom to lots of people across the country as society looks to ‘return to normal’. But it’s important to realise that this is not equal for everyone – and can actually be curtailing people’s freedoms rather than increasing it.
“It’s clear than many people with learning difficulties feel uncomfortable and unsafe returning to the life they led before. Want they actually want is clear action on public health measures, such as masks in indoors space and vaccinating support workers, so they too can once again live, work and have fun.”
Belief that some restrictions should still be in place is high among both cohorts, with over three quarters in each group expressing this desire.
The research published today is the final set of findings from the Coronavirus and People with Learning Disabilities Study, which has tracked the experiences and views of adults with learning disabilities throughout the pandemic. The interviews for this wave of research took place in July and August this year.