National Care Service must have human rights at its heart - Nick Ward

When the First Minister announced an independent review into social care earlier this year we were incredibly excited - we know how hard autistic people and families have to fight to get this vital support and the difference it can make.

Nick Ward, Director of National Autistic Society Scotland.

Social care is the support people receive to overcome barriers and lead meaningful, positive lives. Not all the 56,000 autistic people in Scotland need social care, but for those who do it can be the gateway to inclusion within society. Care itself is incredibly diverse, from a care worker checking in and supporting someone just for a couple of hours a week, to someone needing 24-hour care in specialist housing.

A common misconception is that social care is only for older people when in fact half of local authority spend is on disabled children and working age adults.

Autistic people and families tell us that once they have received a diagnosis (often a struggle in of itself) they find services are either oversubscribed or unavailable in their area. Exhausted families talk of reaching crisis point as they try to support sons and daughters as best they can with little or no help, often to detriment of their relationships, health and careers.

Covid has made things worse with in some cases, with care being withdrawn with little or no notice as local authorities struggle to cope. Families frequently tell us they are permanently fighting, often feeling like a nuisance.

We want to change that and together with the Health and Social Care Alliance we met with Derek Feeley who is leading the review. We took the opportunity to put across the things we think can make a real difference:

We believe that the care system should be one of the things that make this country great but compared to the NHS it has been chronically underfunded. Recently the Cross-Party Group on Autism report found that 72% of autistic people did not have enough support to meet their needs. We need to invest properly, now more than ever.

Diversity of care must continue. Autism presents very differently for different people and is lifelong and complex, only specialist providers can offer that kind of care.

If there is to be a National Care Service, it must have human rights at its heart and aim to improve quality and commissioning, not stifle innovation and diversity.

Care workers receive low wages because of the squeeze on local authority budgets. National pay scales and standards for all should be introduced.

We must recognise and support the incredible work of family carers without whom the system would collapse.

To end the fight people face in accessing care we are proposing a Commissioner who would fight the corner for autistic people and their families and make sure they get the support to which they are entitled.

The Independent Review offers the possibility of transformation but we must centre it on the needs of individuals and the principles outlined above if we are to achieve meaningful change.

Nick Ward, Director of National Autistic Society Scotland