Report highlights impact of COVID-19 on people with learning disabilities and need for new models of service provision

Children and adults with learning disabilities form around 1% of the population, that’s 18,000 people in Northern Ireland. Their need for additional health, social care and educational support is well recognised with 6-7% of the Department of Health’s budget spent on learning disability services. 

The research was led by Professor Laurence Taggart and undertaken as part of a Medical Research Council funded research project to hear how adult persons with learning disabilities in the four UK nations had been affected by COVID-19. Ulster University were part of a consortium of 22 researchers across the UK and worked closely with local organisations to seek the views of adults with learning disabilities and their carers.

The main findings of the study are:

• People with learning disabilities experienced COVID-19 at least to the same extent as the general population with some more severely affected and a higher mortality rate.
• The physical health and emotional wellbeing of people with learning disabilities has declined over the last 22-months as a result of the restrictions placed on them by COVID-19 and their health has not improved as restrictions have lifted.
• People with learning disabilities saw their GPs and other healthcare providers less during COVID-19.
• The support provided by the statutory services available to people with learning disabilities (such as day centres, respite care) disappeared or were markedly reduced during 2020 and they have not resumed to be pre-COVID-19 levels.
• The social lives of people with learning disabilities were severely restricted during COVID-19 and have yet to fully recover due to a lack of community activities, and less work and volunteering opportunities.
• Family carers have had to take on increased caring roles on a 24/7 basis for much of 2020 and this is continuing into 2021 as service reductions persist.

Professor of Intellectual Disability Research at Ulster University Laurence Taggart stated:

“This is the largest study in the world to explore how the COVID-19 restrictions have impacted on adults with learning disabilities and their family carers across the UK. Lessons from this study will help policy makers and those who deliver services, to help rebuild better the appropriate services and supports this population need to have better health.”

Grainne Close, Director of Mencap NI said:

“The true measure of society is in how it treats its most vulnerable citizens in a time of crisis. The report highlights that people with learning disabilities and their families have been failed, yet again. The closure of day care facilities and respite services has increased the pressure on family carers. It is imperative for our government to act now to ensure that people with learning disabilities, and their families, are receiving the right support.”

Recommendations

Based on their research findings, the authors have made a number of recommendations on preparing for further COVID-19 outbreaks and lockdowns; recovery planning; and new models of service provision.

1. Preparing for further covid-19 outbreaks and lockdowns

• Official guidance from Government agencies should be reviewed in consultation with family carers and should be provided in accessible language and different formats.
• Services should have individualised and service contingency plans for the continuation of supports to each person with learning disabilities to whom they provide services.

2.  Recovery Planning

• As a matter of urgency, inter-sectoral plans need to be developed for the resumption of support to family carers and their speedy implementation.
• Greater use should be made of self-directed supports and personal budgets that are more commonly used in Great Britain.
• The current crisis in workforce issues need to be addressed in partnership across all sectors. The establishment of the Social Care Fair Work Forum work needs to be speedily progressed.

3. New models of service provision

• The Department of Health should ensure that the proposed New Service Model for Learning Disability Services being developed by HSC Board is validated with persons with learning disabilities, family carers and current service providers.
• Two major gaps need to be urgently addressed:
  
  -guidance is needed on the partnerships that are required to underpin the model in line with the Departments Co-Production Guidance
  
  -financial analyses are needed as to how the model will be funded; from the redeployment of existing resources as well as new resources required.

• The model should include a shift from congregated service settings to person-centred, individualised services. Regulators and contractors need to support and endorse the new models of service delivery and departmental oversight is needed to ensure that agreed policies are implemented.

Agnes Lunny, Chief Executive of Positive Futures, said:

“This valuable study gives us an important insight into the unique challenges faced by people with a learning disability and their families as a result of COVID-19. It’s vital that health and social care authorities pay close attention to the findings and ensure that people will not have to endure this isolation and anxiety in future.”