We held our second online event on 21 June 2021 to share the updated findings of the Covid Research Study examining the impact of the pandemic on people with a learning disability across Wales (as part of a wider UK Study). As well as hearing from the researchers, leaders from within the learning disability field in Wales spoke about their response to the pandemic. They also highlighted what the findings from the study mean for service provision and the development of future policy for people with learning disabilities.

Summary of findings by Professor Stuart Todd

Wave 2 took place between May and June 2021. The findings showed that the pandemic and restrictions worsened existing inequalities for people with learning disabilities in Wales. Fewer people with learning disabilities have accessed health services, and there has been a drop in the number attending Annual Health Checks. There has also been significantly less access to services across Wales for people with learning disabilities and family carers. Services have interpreted national guidance differently, which has resulted in access to services being variable across Wales. This has all led to people with learning disabilities feeling their human rights have been ignored.

Sophie Hinksman and Humie Webb, Co-Chairs of the Learning Disability Ministerial Advisory Group

The Learning Disability Ministerial Advisory Group (LDMAG) advises Welsh Government on the development of learning disability policy and oversees the delivery of the Improving Lives Programme. Following a review, the group produced a report highlighting achievements of the programme as well as noting any outstanding issues and included several recommendations:

  • Continuation (or suitable replacement) of the Improving Lives Programme.
  • Appointment of a Learning Disability Commissioner to oversee the next phase of the programme.
  • Review of the implementation of the Additional Learning Needs and Education Tribunal (Wales) Act and Code.
  • Innovative approaches to respite and community services.
  • Tackling the issues of loneliness, isolation, digital exclusion amongst people with a learning disability.
  • Reintroduction of annual health checks that have been paused during the pandemic.
  • Review into adult specialised services and an education and training framework.

It is hoped that the report’s recommendations will be used as a basis for Welsh Government’s policy priorities for people with a learning disability in the sixth Senedd.

One positive outcome of the pandemic has been the increasing levels of collaboration and coproduction between Welsh Government, LDMAG and third sector organisations in the production of guidance, advice, and support. However, more needs to be done to ensure that the voices of people with a learning disability are heard and considered when policies are developed and implemented.

Joe Powell, Chief Executive of All Wales People First

Joe’s experiences of living in learning disability care services for 11 years meant he was not surprised at the experiences of people with a learning disability during the pandemic. Covid-19 worsened but did not cause inequalities that people with a learning disability face. People with a learning disability are often used to other people making decisions on their behalf that are deemed to be in their best interest, for example restricting their liberty to keep them safe. It is therefore unsurprising that in a pandemic the rights of people with a learning disability suffer. Social connections and mental well-being are being compromised. Members of People First who live in care settings have had their day services closed and been unable to do their hour of permitted exercise due to staff shortages. Decisions have been made by risk adverse services without considering the impact on the individual.

The expectations of ordinary citizens around the opening up of society have remained out of reach for many people with a learning disability. Moving forward, we must ensure that legislation, including the Social Services and Well-being (Wales) Act and the Future Generation’s Act, is fully implemented. If we say nothing, nothing will change and we must not allow this to happen.

Wayne Crocker, Director of Mencap Cymru

During the pandemic, the Learning Disability Consortium met weekly with Welsh Government to highlight issues faced by people with a learning disability. For example, many found it difficult to understand all the information and rules around Covid-19 and this led to the production of several easy read resources. As it emerged that people with a learning disability were more likely to die from Covid-19 than the general population, the Consortium also successfully campaigned for them to be included in a priority vaccination group.

It is important to maintain contact with Welsh Government to ensure the experiences of people with a learning disability and family carers are understood. We also need to follow the example set by the ground-breaking All Wales Strategy (1983) and consider how we would like life to look for people with a learning disability and their family carers in the future

The influencing and monitoring of the impact of Welsh Government policy development needs to continue. In addition to the recommendations in the LDMAG report, we need to consider the following:

  • Mortality reviews – The reason why people with a learning disability die must be recorded and consideration given if the death was avoidable.
  • Review support services available to people with a learning disability post-pandemic – As people did not receive the same level of support during the pandemic, local authorities may think that care packages can be reduced. This is not the case.
  • Promotion of co-production – Organisations and people with a learning disability and their carers must understand their respective roles in shaping services and be supported to do this through access to self-advocacy and advocacy support services.
  • Mandatory Training – Welsh Government gave a commitment in 2019 that all health services staff would receive training to help them understand the needs of people with a learning disability. This must be implemented.
  • Employment for people with a learning disability post-Covid – Some employment that existed pre-Covid is no longer available. Employment in other sectors such as hospitality must be explored.
  • Returning to Wales – Plans must be put in place to return the 169 people with a learning disability who are currently in Assessment and Treatment Units in England to be brought back to Wales and receive support in their local communities.
  • Invest and learn from good quality research and ensure that findings are implemented – Mencap is funding a PhD in Cardiff University on how people with a learning disability experience stigma and a Masters in University of South Wales on how storytelling can be used to empower people with a learning disability. It is important that everyone in a learning disability organisation promotes research so people with a learning disability can share their views.
  • Recommendations from projects and reports – Recommendations on how services need to foster and support friendships and relationships post-pandemic (including Our Social Networks, Gig Buddies and All Wales People First) must be core to “Building Back Better” in Wales.

 

Group discussions

Participants took part in small group discussions focusing on 2 questions:

  1. What do you think can be done to reduce or remove inequalities as we learn to live alongside the virus?
  2. What recommendations would you make to policy makers?

Suggestions included:

  • Ensuring the recommendations from the research receive adequate resources to be fully implemented.
  • Talking to families.
  • Better understanding and awareness of human rights, both among people with a learning disability and those who support them.
  • Better access to health services.
  • Robust implementation of existing legislation.
  • Adequate access to advocacy and/or self-advocacy to challenge breaches of people’s rights.
  • Creation of a Commissioner role to champion the rights of people with a learning disability.
  • Development of a Learning Disability and Carers’ Charity.
  • Training for people with a learning disability and their families/carers on effective co-production.
  • Improved pay for care and support staff to encourage to make it a more attractive and respected career choice.