- The COVID-19 pandemic has brought into sharper focus the longstanding, structural inequities people with a learning disability and autistic people have faced, which has meant too many people are not receiving the care and support they need and should expect from the health and care system. Immediate action needs to be taken to ensure high-quality care and support is available for everyone, no matter where they live in the country or the complexity of their needs.
- The majority of learning disability and autism services are providing people with good care according to Care Quality Commission (CQC), and there are a number of services that have been rated as ‘outstanding’. Our interviews with trust leaders providing high-quality care and services endorse this, demonstrate their commitment to coproducing high-quality, person-centred support, and provide helpful learning for all those involved in commissioning and providing care and support for these groups of individuals.
- However, there is clear evidence of a historical inequity in the development, commissioning and provision of care and support for people with a learning disability and autistic people, which has left these groups of service users disadvantaged in terms of their health and wellbeing, life chances and expectancy, and in extreme cases open to abuse. A significant number of recent cases of poor care relate to NHS-funded care in the independent sector. Given this, there are questions to be asked and answered around the quality of service commissioning and the impact of a mixed market of independent and NHS provision on these vulnerable groups of service users.
- Further challenges impacting trusts’ ability to provide the right level and nature of support for people consistently include: increasing demand and workforce shortages - particularly of specialist staff and constrained funding for high-quality services in the community and social care. These issues are placing unsustainable pressures on the health and care system and mean too many people are not able to access the care and support that they need in a timely way, from the point of diagnosis and throughout their lives.
- Trust leaders strongly support the long-held ambition to move people inappropriately placed in hospital into community-based care, however, they have significant concerns about how this policy has been implemented and the process of change to date. Trust leaders described the latest programme for delivering on this agenda, Transforming care, as “a paradigm shift” in how care and support is delivered that is as much about high-quality, supported-living provision as it is about health services. From the outset, more focus, resources and time needed to be dedicated to ensuring high-quality, resilient community-based alternatives and wider support packages are available to enable people to live in their local communities more independently.
- To address these historical inequities and improve their access to high-quality care and support as close to home as possible, national bodies, providers and their partners must work together to ensure rapid progress is made on the following priorities and challenges:
- Immediately tackling the stigma associated with learning disabilities and autism and raising awareness of the need to improve the accessibility and quality of care and support for these groups of individuals nationally and locally. Discussions and decision making regarding the best approach to delivering high-quality, person-centred care in highly-specialist and forensic settings also need to be more balanced and evidence-based.
- Improving and increasing the transparency of funding mechanisms to guarantee funding for the sector reaches the frontline services that need it most and is invested in the establishment of high-quality services people need where these do not currently exist. The ambition to give people a personal health budget, with the appropriate governance and safeguards, is particularly important to prioritise so that funding truly follows service users and they get tailored packages of care that fully meet their needs.
- Securing sustainable levels of revenue and capital funding across health, social care and wider public services – including education, housing and employment support – to invest in high-quality services in the community that provide people and their families with the upstream support they need, and secure, high-quality housing provision in places where people want to live.
- Maintaining the focus on the strategic development of the learning disability and autism workforce in the framework of the final people plan. National policy makers also need to align their thinking on a coherent approach for health and social care more broadly, and the upcoming spending review must including financial allocations for multi-year funding for training and professional development for existing staff. The costs of delivering adequate supervision, support and systems for reflective practice and learning also need to be factored in, given their key role in enabling good practice development and improving staff retention.
- Progressing the plans set out in the NHS long term plan to support local providers to develop new models of care to provide care closer to home and invest in intensive, crisis and forensic community support: this work must be properly resourced and effectively commissioned, with service users and experts by experience playing a leading role in partnership with lead providers and commissioners. Nationally and locally we need to share and learn from what works in provider collaboratives as they develop.