We must not forget people with learning disabilities and autistic people during Covid

Over the summer I worked with experts-by-experience Trevor Wright and Rachel Moody to co-chair an advisory group of people and organisations who drew up recommendations for government on supporting people with learning disabilities, autistic people and their families during the next six months. Our report was published by the government last Friday, along with the Social Care Taskforce report and the Winter Plan. Here is our joint statement as the three co-chairs. Please share it! There is an easy read version which will shortly be on our website.

Response to the Social Care Taskforce report and the Winter Plan From the co-chairs of the Advisory Group for People with Learning disabilities and Autistic people 23^rd September 2020

We are glad to see our report published in full and its recommendations included alongside the Taskforce’s over-arching ones. We welcome the emphasis in the Taskforce’s report and the Winter Plan on PPE, testing, Flu, workforce and stabilising provider organisations.

The Taskforce’s over-arching report and the Winter Plan are heavily focused on what has been the most visible crisis in care homes for older people. Now much more attention is needed on those of all ages including those who live in their own homes and those who receive care in the community.

The Taskforce has recommended that government should work with the Advisory groups on all outstanding Advisory group recommendations. We urge the DHSC to establish working arrangements to take this recommendation forward and we offer our continuing assistance. The Winter Plan urges local bodies to “put co-production at the heart of decision-making, involving people who receive health and care services, their families, and carers.” This must happen at national level too.

Our five highest priority recommendations were specific and included actions which can only be taken by government and its national partners. They addressed these five areas which are of most concern to the people, families and community groups we heard from:

1. Producing timely accessible guidance and communications to ensure people with learning disabilities and autistic people have the same information at the same time as everyone else.
2. Restoring, maintaining and adapting vital support services, pausing unwanted reviews of support packages during the crisis, to give individuals and families stability and to reduce the anxiety and pressure which many have been experiencing over many months.
3. Financially stabilising provider organisations, and expanding PPE, testing and support to all providers, not just care homes; growing the most effective and personalised community and home-based support models.
4. Tackling the concerning increase in isolation and loneliness through a national awareness campaign and working with mutual aid and other community groups.
5. Councils, CCGs and partners finding and supporting people who are usually too independent to require social care but who may be in crisis due to the many impacts of the pandemic.

The taskforce and Winter Plan address vital practical and physical support issues, but we are deeply worried that the lack of current attention to emotional and mental health, inclusion and social support may be sowing the seeds of a national mental health crisis for disabled and autistic people, and their families.

The Winter Plan urges local bodies to “address inequalities… involving people with lived experience wherever possible, and consider these issues throughout the implementation of this winter plan” (Actions for local authorities & NHS organisations). Again we urge government to lead by example, working with national VCSE organisations and people with lived experience. Addressing inequalities requires government to address the lack of data gathering and analysis which we noted hamper efforts to identify and address the needs of people with learning disabilities and autistic people.

Finally, the people we heard from cannot wait until after the pandemic for long-term reform, which should be based on a rapid move to more personalised, community-based and integrated approaches to social care, in which the state, voluntary services, individuals and families work more closely together. It is vital that we build resilience of people and families, whether or not they currently access formal social care, as we head into what could be the most difficult period of the pandemic.

The Advisory Group’s co-chairs:

Alex Fox OBE                       Trevor Wright                        Rachel Moody