Will there be any impact for our communities within the proposed reforms?
ARC England, representing over 100 organisations that support people with learning disabilities and autistic people, welcomes the publication of both the Terms of Reference of the Casey Commission and the Health and Social Care Committee’s recent report, which powerfully captures the essential role of social care: “The NHS undoubtedly saved my life, but social care helps me live it.”
We commend Baroness Casey’s decision to begin by listening to people who receive care, unpaid carers and frontline professionals. This is exactly where reform must be rooted, learning directly from lived experience.
However, the need for reform has never been more urgent. The Health and Social Care Committee reports a staggering £1.89 billion cost of inaction, with 2 million people aged over 65 and 1.5 million working-age adults not receiving the care they need. This leaves too many lives diminished by lack of adequate support especially for people with learning disabilities and autism, who are often disproportionately affected.
The funding situation is dire
Through our annual Fee Rate Maps work we have seen over the last seven years a progressive erosion of vital services due to lack of investment. Members report that they are being forced to refuse care packages they are fully capable of delivering, and are returning existing packages because the costs are unsustainable. More alarmingly they being asked to draw on financial reserves that they have a legal obligation to safeguard in order to maintain support for people.
More Than a Provider, a collaborative of six non-profit organisations supporting people with learning disabilities, autism and complex needs, reported to the Health and Select Committee that 13% of their contracts are loss-making.
Leonard Cheshire, which supports over 1,300 individuals, highlighted: “When commissioning decisions are made, the funding often does not cover the additional costs essential to support the quality of life, independence and choice of disabled people. This has created a ‘race to the bottom’ in social care commissioning. In some cases, we have had to withdraw from tenders because local authority rates are too low to ensure safe, quality care.”
The consequences of these unsustainable funding models are severe: services are destabilised and people who rely on them face increased risks to their wellbeing and safety.
A fragmented system
Melanie Williams, President of the Association of Directors of Adult Social Services (ADASS), vividly described how integration is hampered:
“We spend too much time debating who pays for care, rather than focusing on how we can invest in better outcomes for people. Budgets are tight for both local authorities and the NHS, leaving little room for innovation or collaboration.”
This fragmented approach severely impacts people with learning disabilities and autism especially those stuck in Assessment and Treatment Units (ATUs). More than 2,400 individuals remain detained in these settings, in what ARC England believes amounts to neglect and breaches of human rights. We urgently need to see real progress in moving people out of ATUs and into appropriate, community-based support.
A critical gap in the Commission’s scope
While the Commission’s terms of reference include supporting the delivery of health and adult social care reforms, there is insufficient detail on how the vital interface between social care and NHS services for those people with learning disabilities, autism and other complex mental health needs to be reviewed. This gap risks missing the most powerful levers for long-term, system-wide improvement.
We must ensure a comprehensive review of how social care, housing, criminal justice, social work, local authorities and the NHS work together at every level. Anything less is a missed opportunity that could undermine the success of the Commission’s work.
An urgent call for action
ARC England calls on the Government to act decisively now. While the Casey Commission sets the stage for long-term reform, the people we care for and their families cannot wait another year for relief. Immediate, tangible support is needed to keep services running, protect those who depend on them and prevent further collapse of critical care infrastructure.
Victoria Buyer of ARC England said:
“Our members are already under enormous pressure; this financial year will be catastropic for many. Their services, which include supported living, residential care, domiciliary care and day services, are the backbone of support for more than two million people with learning disabilities and autistic people in our country. Time is running out. Without urgent action, we risk losing key parts of our care infrastructure before reform can even begin to take effect.”
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