A year-long study has found that people with a learning disability in Wales, and their families/supporters, experienced a multitude of negative effects during the pandemic.
While the general population experienced lockdowns and isolation, the final report of the Welsh Covid study has found that the effects on people with a learning disability have been significantly more profound.
These negative effects have included reduced services and support, including many people denied an annual health, which has in turn added more pressure on to family carers; increased anxiety and loneliness; and a severe reduction in social activities and relationships.
Three immediate concerns
The final report of the Welsh study highlights a need to address three immediate concerns:
- Giving future thought to how people with learning disabilities will be impacted by any future pandemic-related restrictions.
- How to improve the deficit in support people have received from health and social care services.
- The possible longer-term impact that living through restrictions may have had on the health and well-being of people with learning disabilities and those who support them.
Funded by UK Research and Innovation, the Welsh study is part of a wider project researching the impact of the pandemic on people with a learning disability across the UK. In Wales, research teams from University of South Wales and Cardiff University have conducted the study, with support from Learning Disability Wales, All Wales Forum of Parents and Carers, and All Wales People First.
Researchers across the UK, supported by learning disability organisations in each nation, interviewed over 1,000 people with a learning disability in two groups. In group 1, a total of 685 people with mild and moderate learning disabilities from across the UK were interviewed by telephone or Zoom interviews. In group 2, a total of 448 family carers, or paid support staff, of people with more severe or profound learning disability completed an online questionnaire. The groups were interviewed 3 times (December 2020 – January 2021, April – May 2021 and July – August 2021) and were asked what was happening to them at that time. During the first interviews, people were also asked what their lives were like prior to the pandemic.
Wales was well-represented in the study with 173 people with learning disabilities taking part in the third round of interviews and 56 family carers or support staff completing the online survey.
The demographic of people involved in the study in Wales is as follows:
- 50% identified themselves as male and 48% identified as female.
- 54% were aged younger than 35; 31% were aged 35-55; and 14% were older than 55.
- 94% identified as white.
The study had difficulty in recruiting people with learning disabilities from black, Asian and minority ethnic communities in Wales. To develop a more rounded account of how the experiences of all people with learning disabilities in Wales, the final report recommends that future studies and consultations must find innovative ways of working with people with a learning disability from these communities.
Findings of the Welsh study
Below is a summary of the final report and its findings.
In January 2021, 68% of people with learning disabilities in group 2 and 55% in group 1 reported they had underlying health conditions, such as asthma and epilepsy, that made them concerned about catching Covid-19. At the same time, about 30% of people in both groups said they had recently been tested for Covid-19, with one in five of those testing positive. This was higher than reported for the wider population.
Compliance with Covid regulations
In December 2020, 89% of group 1 and 73% of group 2 reported wearing a mask when out. In August 2021, 72% of the whole study group said they thought that mask wearing and social distancing should be maintained even when restrictions were lifted.
One person said: “I’m happy that restrictions are starting to ease. But I also feel very anxious that people are starting to not wear masks and socially distance.”
The study found that:
- People with learning disabilities in Wales engaged with public health advice for their own safety and for the safety of others.
- People with learning disabilities thought that social distancing and mask wearing was important. They felt these measures should be maintained as they would give them greater confidence in re-engaging with their local communities.
The impact on people’s health
74% of participants said that they usually had an annual health check. In January 2021, only 36% of group 1 and 24% of group 2 had received their annual health checks. By part 3 this had increased slightly, with 38% of group 1 and 37% of group 2 reporting they had received their health check. Fewer than half of the people who used to have an annual health check had received one by August 2021.
Impact on well-being of people with learning disabilities
In December 2020 Wales entered a third lockdown. 84% of people in group 1 in January 2021 reported feeling lonely, worried or sad most or all of the time. By August 2021, restrictions had eased somewhat, and people were able to meet up more often. At this point, 46% of people in group 1 reported that they were lonely, worried, sad or anxious.
One person said: “I’d like to go out again without worrying about dying and giving people coronavirus.”
The study found that restrictions on visits from family or friends were imposed on people living in supported living or care homes. It is acknowledged that care and support services worked hard to adhere to the rules and keep people safe. However, decisions about going outside or receiving visitors were often made without involvement of the person themselves. For some, these additional restrictions continued after the general public were able to live with fewer restrictions, due to a shortage of support staff or blanket rules and risk assessments within services.
The impact of visitor restrictions had a detrimental impact on the well-being of everyone, especially those with a severe learning disability. This highlighted the need for a different approach to be taken if similar restrictions are imposed in the future.
The study found that:
- People with learning disabilities experienced poor physical health and emotional wellbeing during lockdown. There have been some improvements in emotional wellbeing, but less so for people with more severe and profound learning disabilities.
- Access to mental health services was severely constrained in the first phases of lockdown and continues to be limited.
- Some of these difficulties people experienced might be related to factors beyond living through a pandemic. Many people with learning disabilities experienced the death of a significant other in their lives
Use of services
The study found that people with a learning disability received reduced care and support during the pandemic. There was also a big reduction in the number of people who were able to access day services. In August 2021, a third (32%) of people with a learning disability who received support from services said they were receiving less support than they had done before the pandemic. For people with more severe and profound disabilities this increased to 48%.
Just over half of group 2 said they used a day service regularly prior to lockdown. By August 2021, this had reduced to 30%. Around 33% of people in both groups said they had used a respite service regularly prior to lockdown. By August 2021, 25% of people in group 1 said they had done so again in the previous 4 weeks and for group 2 it was about 16%.
This situation not only had a significant impact on people with a learning disability, many of whom were unable to meet up with their friends outside of the day services, but for family carers as well who had to continue providing care during the day when their loved ones would normally be attending a day service.
The study found that:
- The support from statutory services available to people with learning disabilities disappeared or were markedly reduced during 2021. Although there had been some change by August 2021, it had not resumed to pre-Covid levels. The change was lower for people with more severe learning disabilities.
Impact on social relationships
Prior to the first lockdown in March 2020, 86% of both groups took part in community activities, for example, visiting community groups, cafes and shopping. After this, 72% of people in group 1 and 83% of group 2 reported that this was no longer the case. By August 2021, 57% of group 1 and 48% of group 2 were taking part in community activities. Engagement in community activities had clearly not reverted to pre-pandemic levels. However, some people said that they were now having more contact with local neighbours and people living nearby than ever before.
One person said: “I am chatting more to my neighbours, and I am feeling more confident in talking to the people who live close to where I live. I think I have now met all of my neighbours since the pandemic started. My neighbours have also been helping each other out when people have needed it.”
Only 33% of people in group 2 used the internet compared to 92% of group 1. Not everyone was able to use the internet independently or whenever they wanted to.
One parent highlighted the impact of not being able to see her son, who lives in supported living, on her and the rest of the family: “He needs constant reassurance that his family love him, need him and can see him. He finds it difficult to engage fully via Zoom. Not being able to see his family in person resulted in his mental health suffering, as did the mental health of his family”.
The study found that:
- The social lives of people with learning disabilities were severely restricted during Covid and have yet to fully recover.
Impact on carers
The pandemic has had a big impact on the well-being of family carers and paid support staff. In addition to this, there was a reduction in the number of people with a learning disability who were able to access day services and respite. This meant that the care of their loved one rested entirely on family carers.
The study asked family carers and paid support staff about the impact the pandemic had had on themselves. In December 2020, 68% said they felt stressed, and in August 2021 it was much the same (71%). At the start of the study 64% said they experienced disturbed sleep, with 60% saying they felt tired and 47% depressed. By August 2021 these levels were similar: 61% reporting disturbed sleep, 78% feeling tired and 43% reporting depression. Only 8% in December 2020 said “none of these experiences” applied to them, dropping to 7% in August 2021.
One family carer said: “My son cannot be left at home safely alone. The main impact has been on me. All the responsibilities are on me.”
A paid support worker said: “The person I support used to have four days a week, now its 2 days every 2 weeks. This means his carer has an even greater workload.”
The study found:
- Family carers have had to take on increased caring roles on a 24/7 basis for much of 2020 and this continued into 2021 as service reductions persisted.
- Many family carers or paid support staff reported that the extra caring roles had a negative impact on them and their well-being during 2020. By August 2021, these numbers had increased.
One in three people in group 1 said they thought their lives might go back to how it used to be in 12 months or more, however most people (42%) said they were not sure when this would happen.
People were asked about what would be important to them if there were to be future lockdowns. There were many ideas but most focused on the following:
- help with shopping
- support to see a GP
- support to get medicines
- more accessible information about lockdowns
- support to use the internet or a mobile phone.
One person said they wanted “very small things. Going for a coffee with a friend. I want to go to watch the rugby, but my mum isn’t ready to let me. I want to go back to horse riding as well.”
Learning Disability Wales’ CEO Zoe Richards commented on the findings of the study and her hopes for the future:
“It is clear from the number of people in Wales who contributed to the research that there was a desire from people to share their experience during the pandemic. For most their experience was negative, and people felt that they were further discriminated against because of their learning disability. As we now move to create a better world post-pandemic, it is vital that we acknowledge the challenges and suffering people have faced and that the voice of people with a learning disability along with family carers offers the greatest steer in designing what is next”.
Learning Disability Action Plan
When the report was being written, the Welsh Government was developing the Learning Disability Strategic Action Plan, which outlines how support and services for people with a learning disability will be provided from 2021 to 2026. Many of the things asked about in the study are also covered in the draft action plan. Learning Disability Wales referenced the following findings from the Covid study in our recent response to the consultation on the draft plan:
- We need new ways to find and talk with people with learning disabilities who are black, Asian or from an ethnic minority community. This will make sure decisions include everyone.
- We need to find out more about the lives of people with learning disabilities in Wales. This will help with planning better services. Working together as a partnership of researchers and different organisations helped to make this study happen. Future research could learn from this.
- Many people with learning disabilities feel lonely and isolated. The pandemic made this worse. Using phones and the internet to speak with people helped. But people prefer to meet others in person. Help to use phones and the internet should be part of day-to-day support, not an extra.
- People with learning disabilities need to be included when planning help for people whose loved ones have died.
- Many people took part in the study. They wanted to have their say. Many decisions were made for people during the pandemic, even decisions people can make for themselves. It is important that people with learning disabilities are included in future decision making.
- People with learning disabilities were worried about their paid jobs during the pandemic. More support is needed to help people stay in jobs and for people to get the chance to work.
- During coronavirus people with learning disabilities did not feel they were thought about when decisions and rules were made. This must change.
The following proposals are taken from the easy read version of the final report.
In future health emergencies decision makers need to think about:
- How to support people with learning disabilities to keep seeing loved ones.
- How to support the mental health and wellbeing of people with learning disabilities.
- How to help people keep the same quality of life.
- How to make sure people with learning disabilities’ rights are respected as much as other peoples.
- How to include people with learning disabilities, their family carers and paid support staff in reviewing rules about coronavirus.
- All new rules and information should be in easy read.
- Plans should be made so people with learning disabilities do not lose support.
An event is being planned for later this year to discuss the findings from the study and future work.