The Covid-19 pandemic had created an opportunity to go ‘back to basics’ with social work and social care practice and it is hoped this will lead to sharper focus on early intervention and building positive life experiences for people with learning disabilities and/or autism.

A report from the Association of Directors of Adult Social Services (ADASS) - The impact of the COVID pandemic on adults with learning disabilities and/or autism, their family carers and service provision  - suggests that the health and care sector is ready for new priorities and potential new ways of working.

This includes a move away from building-based services, investing instead in a more diverse set of opportunities for enablement and independence in communities, well-planned transitions between children’s and adults’ social care services, and developing a wide range of supported employment opportunities.

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Other priorities going forward include maintaining a healthy lifestyle and good mental health, facilitating social connections, friendships and relationships, and creating a good choice of housing options.

Aim of the review

The aim of the rapid qualitative review is to build on the work of the ADASS Covid-19 Programme Team in supporting people living with learning disabilities and/or autism, and their carers during the Covid pandemic.

It used semi-structured interviews and a roundtable event to capture professional perspectives a year after the Covid-19 pandemic began. The main lines of enquiry for the review were:

  • How has the pandemic affected services for people with learning disabilities and/or autism, the people using them and their family carers?
  • What adaptations and changes in practice or commissioning have evolved over the past 12 months?
  • What needs to happen around provision for people with a learning disability and/or autism as we emerge from the Covid-19 containment measures and beyond?

Addressing inequalities for people with a learning disability

The report highlighted how the pandemic has brought into sharp focus the health and social inequalities faced by people in the learning disability and autism community. It says that questions now need to be asked about progress made to prevent discrimination.

An example of this inequality was seen in the early stages of the pandemic when the social care response was driven only by a focus on older adults living in care homes, and people with learning disability or autism were perceived to be an after-thought by government. The report said this was reflected in the lateness and fragmentary nature of national guidance, testing and PPE relating to these groups of adults.

The interviewees also felt that it did not take a proper account of the needs of people with a learning disability or autism in lockdown, including the feasibility of the containment measures and the greater impact these would have on their lives.

In addition, several localities reported they had seen a disproportionate number of deaths in supported living settings, which they felt was linked to the challenges of enforcing Covid secure practices within someone’s home environment.

The experiences of people with learning disabilities during the pandemic

There was an awareness that adults with the most complex and profound needs have been the most challenging to support well during the pandemic, despite best intentions and efforts.

It was also widely considered that the reduction of available social care and community provision would have exacerbated pre-existing physical and mental health and wellbeing challenges. Increases in anxiety and depression were reported, alongside boredom and frustration. Decompensation, a term usually used to describe the loss of cognitive, psychological, and physical function after a prolonged stay in hospital, was also discussed and the need to factor this into local recovery responses.

In addition, a key concern highlighted was employment opportunities for people with learning disabilities and/or autism. There is a perceived risk that the invaluable role of supportive, appropriate employment opportunities will be de-prioritised by employers in a climate of rising unemployment within the working age population and a competitive job market.

Volunteering opportunities have often been a pathway into employment, but there is uncertainty about how fully those opportunities will be re-instated. It was felt that councils and their partners need to ensure these are sustained.

Most localities also flagged as an early priority transition planning for young adults moving into Adult Social Care provision.

The experiences of family carers during the pandemic

Interviewees acknowledged the extremely high burden of responsibility for care that fell on family carers, especially for the families of adults who largely accessed day provision, which remains radically reduced in most localities.

These current levels of care are not sustainable for many families and increases in requests for additional support/respite from family carers since the January 2021 lockdown have been reported.

Whilst interviewees expressed a reasonable level of awareness about the issues faced by family carers, several interviewees highlighted a need to engage early with carers, in particular older parent carers, about their experiences over the past year, to understand their experiences and the impact on their wellbeing.

What happens next?

Most interviewees in the report believe the impact of the pandemic may not become clear for at least another year as many local and regional systems are yet to go into a recovery phase from the pandemic.

The main enabler of a return to pre-pandemic levels of provision was thought to be high uptake of the vaccination programme amongst people with a learning disability or autism, and the care workers supporting them.

It is also hoped that the close working needed during the pandemic between commissioners and providers would lead to more discussion about ways to change their business model and service offer.

One recommendation in the report is that councils and their sector partners should move away from a heavy reliance on building-based services as the gradual reintroduction of day and short break/respite provision begins. During the pandemic, alternatives to usual day and respite provision typically included support offered virtually and via outreach. They also conducted care reviews virtually where needed.

Anecdotal reports from some adults with learning disability and autism suggest that being able to engage with friends online in a managed, closed group from their own homes, was sometimes preferable to spending time in a noisy day centre where they did not always enjoy taking part in the activity on offer.

Conclusion and priorities going forward

The main recommendations from the review focus on challenging inequalities, co-producing better support, strategic re-alignment, supporting independence and sector-led improvement.

It was felt that good collaboration between individuals, families, services and the community would help build positive life experiences for people with learning disabilities and/or autism.

The report concluded: “The experience of Covid for many localities and regional representatives had led to a sharper focus on, and increased importance given to, the wellbeing and resilience of people who use services and their families, which they hoped to sustain in future commissioning and practice.”