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 23rd 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

Accelerating Ideas – shaping local systems

In two blogs, I and my colleague Anna McEwen will reflect on what we achieved, struggled with, and learned around two of the main objectives of our recently completed Accelerating Ideas UK development project, supported by Nesta and funded by the National Lottery Community Fund.

  • establishing a new strategic advice arm and supporting commissioners to start and expand Shared Lives and Homeshare services
  • establishing our work in all four UK nations, building on our success and government support in England and Wales

We wanted to develop a strategic advice business for two main reasons: to help local leaders to work with their  provider organisations to improve and grow Shared Lives, Homeshare and other personalised models, and to bring us a sustainable source of income so that we rely less on grant funding.

This work started to in earnest in 2017-18 and accelerated rapidly: nearly 70 contracts to date, including work with Australia’s changing disability support service and in British Columbia. A typical example is the Shared Lives service review for Bridgend Council which included an evaluation and analysis of Shared Lives in Bridgend, and a comprehensive business case and options appraisal looking at externalised and in-house delivery, working with other localities, and growing the scheme. A key aspect of our work is the work of the team of people with lived experience and their Shared Lives carers, who carry out peer-to-peer research, alongside colleagues who look at practice, use of resources and compliance, to produce a rounded picture of what a local service does, its outcomes, but also how it feels to the people who actually use and deliver it.

One of our largest projects has been with Greater Manchester Health and Social Care Partnership (GMHSCP) to develop and implement an ambitious five year plan for an additional 600 people using Shared Lives, across Greater Manchester. Jo Chilton, Programme Director, Adult Social Care Transformation Programme said, “Greater Manchester has high ambitions for scaling up Shared Lives but we want to ensure that people currently involved in Shared Lives and those who may wish to be supported in Shared Lives in future, help assess how ready we are to do more, and what would need to happen to make our ambition a reality. Our partnership with Shared Lives Plus is vital to getting this right from the start.” This included a detailed evaluation of five of the ten Shared Lives schemes using a combination of scheme health checks and data analysis. The city region is investing and working towards the UK’s most ambitious goal to date, of  15% of people who have a learning disability and use social care to be using Shared Lives.

Our main challenge has not been winning work, it has been expanding our delivery capacity to keep pace with demand. We use a small number of associates for specialist tasks, but a lot of the delivery has been in-house, and the expansion of our capacity off the back of demand for support, rather than through grant-funded expansion, is one of a number of culture changes for our team: we have needed to be willing to take some different kinds of risk to expand. We tailor our work to the local places we are working in, rather than around a bid submitted to a grant maker.  In changing our model, we were focused on remaining true to our values and serving our members, who are 6,000 Shared Lives carers and 170 local organisations. The key to this has been to develop an offer which is shaped by our values and coproduction approach, and marketing this and our unique place as the only national Shared Lives and Homeshare organisation, not as extra cost or time, but as the best reason to work with us: after all, what would be the purpose in expanding the most personalised support approaches, if you didn’t pursue that expansion in a personalised way?

Some of the impacts of this are more expected than others. We have long understood the need to get local areas to invest in development work, if they are to value it, so we hoped to see the buy-in we have achieved through contracted work, but one risk we identified was that it might make our campaigning work harder, around issues like Shared Lives carer pay, for instance. In fact, embedding the practice of coproduction with Shared Lives carers, and developing closer relationships with local leaders, has in some areas made it easier to raise issues around valuing supporting – and paying – Shared Lives carers, rather than harder.

It’s not all been plain sailing, of course. All the advisors who helped us develop this business talked about the risks of under-valuing and under-pricing our work, over-promising, and under-estimating the time needed for work. We thought we’d understood that advice, but we did all of those things and had to learn the hard way. This has increased pressure on our team at times. We’ve coped with those challenges though and this new way of working has not only given us a more sustainable future as a charity, it’s brought a level of learning and insight which we could not have achieved in any other way.