Reflections on the last decade
FitzRoy was started by Elizabeth FitzRoy, a mother of a child with Down’s syndrome, over 50 years ago. It has always been a pioneering force for people with learning disabilities delivering a compelling vision of ‘homes in communities’. Reflecting on the history of the sector, we must learn from previous mistakes. During the eighties, the new plan for ‘Care in the Community’ saw the closure of large institutions. We all hoped that this would change lives for the better, but the lack of capacity within communities proved a significant block. The vision is still a work in progress.
We recently researched the concerns of families, particularly in light of further local authority budget cuts and a pressure for social care to provide more for less. In our report Who will care after I’m gone? we discovered that many families feel in crisis. They often have profound anguish for their loved ones with learning disabilities, and are struggling to understand a confusing system of care that takes a short-term approach. Families told us they live in fear of the dire consequences of incorrect assessments and the lack of consistent and quality care. Some were so worried they were driven to wonder if it would be better if their child died before them.
The research also revealed concerns over the low status given to highly-skilled care professionals. There has always been a gulf between the status of healthcare workers and care professionals. This disparity has a direct impact on recruitment and retention and has created big problems for those relying on services. This high staff turnover is killing trust, costing money and wasting resources.
Projections for the next decade
The report came just after NHS England’s Building the Right Support. This sets out a welcome vision for the future of a national plan to close inpatient facilities for people with a learning disability. This is welcomed and it is fantastic to finally see commitment to ending the type of inappropriate hospital care that led to the Winterbourne View scandal. We, however, fear the consequences on already stretched community resources.
Community services need investment to take on extra capacity. Local authority budgets will continue to see further cuts impacting directly on local services and care providers. Families are already facing waiting lists for housing, and scaled back day services, this won’t change.
We have long held the view that we need to take a ‘whole of life’ approach to integrated care, and our research highlights this need. To tackle the problems that are stacking up we must work creatively to deliver innovative solutions to social care. This is already being done in some areas through schemes like Shared Lives. In addition, we must address the low social status care workers are given.
Short-term planning is creating many ongoing problems for people, whilst costing money for local authorities when care packages break down or focus on crisis provision. A real commitment to a whole-life approach, one that integrates the care needs of each individual, from education, housing and employment to healthcare, will stop the crisis escalating.
It is vital that we listen to people with learning disabilities and their families and then commit to putting their experiences and needs at the heart of future social care planning.
Never lose sight of your mission and your founding values. When times are tough don’t retreat to a place of safety, challenge yourself to push for creative solutions and innovations. Above all, listen to the people using your services and the staff working on the frontline for they hold the keys to the future changes necessary.
The FitzRoy report Who will care after I’m gone? is available below. Subscription required.