Today, the Social Care Institute for Excellence (SCIE) has launched a new best practice resource for the adult social care workforce: ‘Tackling inequalities in care for people with learning disabilities and autistic people’.
People with learning disabilities and autistic people continue to experience unacceptably poor health outcomes in comparison to the rest of the population, leading to lower life expectancy and a higher number of avoidable deaths.1
During the pandemic, a report from Public Health England2 found that people with learning disabilities were four times more likely to die from COVID-19—with researchers estimating the real rate may have been as high as six times once accounting for unreported deaths.
We recognise that some of the challenges that people with learning disabilities and autistic people experienced during and after the pandemic are not new. Prior to COVID-19, research3 revealed a lack of awareness, understanding and skills among the health and social care workforce about the health risks facing people with learning disabilities and how to ensure that they receive the right care.
Following the Public Health England report, SCIE was funded by the National Lottery Community Fund and other charitable foundations to produce guidance building on the experiences of people with learning disabilities and autistic people.
SCIE’s new guidance aims to close the gap in skills and knowledge across the adult health and social care workforce. It gives commissioners and practitioners the practical steps, confidence, and legislative awareness needed to improve experiences of care and support.
SCIE established the SCIE Fliers, a group of people with lived experience of learning disabilities and autism, and worked with them as part of this project to understand their experiences of the COVID-19 pandemic and draw out lessons and opportunities for learning.
This guidance encompasses learning from our discussions and work with commissioners, service providers, and people with lived experience, as well as drawing on existing tools and resources.
A video has also been created in collaboration with the SCIE Fliers to sit alongside the guidance as an audiovisual guide. The SCIE Fliers co-scripted and co-storyboarded the video and feature in it.
Kathryn Smith OBE, Chief Executive of SCIE, said:
“SCIE’s vision is for a society that enables people who draw on social care to live fulfilling lives; where good, high-quality care maximises people’s choices and removes social inequality. It must be accessible to everyone who needs it—and empower them to live the lives they want to live.
“This guidance highlights the important steps we must take to achieve this vision and transform the lives of people with learning disabilities and autistic people.
“We must address systemic barriers and ensure that co-production is central to the design and delivery of care and support services. Only then will we have a system that is fair, equitable, and fit for the future.”
John Hersov, SCIE Fliers facilitator and consultant with over 40 years of experience in learning disability advocacy, said:
“This guidance reminds us of what still needs to be done to ensure that health and social care services are truly responsive to the needs and requirements of this group of people.
“It reinforces the need to cut through organisational charts and jargon-filled terminology to impact meaningfully on the individuals that we are there to serve.
“The video personalises these aims. Hearing from experienced self-advocates who know what they are talking about; emphasising again that you need to try to understand better the person you are supporting.
“We hope you watch, use it, and tell your friends.”
