As a charity working day in day out with people with learning disabilities, at FitzRoy we are acutely aware of the pressures their families face. Through research we recently conducted (pdf), many families revealed the often profound anguish they feel. Confused by the systems of care, they live in fear of the dire consequences of incorrect assessments and the lack of consistent and quality care available. This is exacerbated by ongoing funding cuts to budgets and services. Some were so profoundly worried they told us they sometimes hoped that their children would die before them.
These findings are shocking, and come on the heels of the recently published report Building the Right Support. This report, which we welcome, sets out a vision of a national plan to develop community services and close inpatient facilities for people with learning disabilities. This is a long overdue, and very important, step forward. We are finally seeing a real commitment to ending inappropriate hospital care. It will rightly be welcomed by families and campaigners alike, but we fear the consequences on already stretched community resources.
Local authorities’ budgets, already cut to the bone, are seeing further cuts coming down the line. These impact directly on local services and there is a danger that care providers will be forced into a race to the bottom, with more and more contracts being awarded to the lowest cost provider. It is not at all clear that community services are in a position to take on any extra capacity. Families tell us of long waiting lists for housing, day-service provision being scaled back, and feeling that they’ll only be heard if they shout and prove they’re in crisis.
It is this lack of resource that means people are facing a patchwork approach to planning care that ignores the long-term needs of individuals and their families. This often costs more in the long-run as it can lead to breakdowns in care packages.
We’ve been here before. During the 80s we saw the closure of mental health institutions under a transforming vision. Care in the community was the answer, and would change lives for the better. While the vision was big and exciting, with huge potential, it wasn’t matched with capacity in developing community resources. This vision has stumbled under the weight of expectations, and 20 years on it is still a work in progress.
The risks are further exacerbated as the whole sector faces difficulties recruiting and retaining frontline staff. Wrongly, a job in care is often seen as being low-paid and low-skilled. Parents naturally value the role each care professional plays in their lives extremely highly. They expressed huge frustration as why such a crucial and responsible job is so often misunderstood by the public at large. The government must tackle this with a national campaign to encourage skilled people into the profession by showing what a rewarding job it can be.
The evidence is clear: we sideline families and carers at our peril. Commissioners and social care providers must bring the voice of the family to the heart of our plans to deliver social care for people with learning disabilities. If we don’t we will continue to marginalise their fears, and ignore important lessons.
While the new national plan to bring care into the community has the capacity to deliver important change, it will fail if it isn’t supported by the necessary resources. If we fail now, families and carers will continue to feel marginalised and misunderstood.
