Opinion: Spare a thought for family carers

Mary Langan is aware that carers need more resources.

Mary Langan is aware that carers need more resources. - Credit: Archant

It’s not just the elderly who need adult social care services.

When I meet up with other carers for adults with autism and learning disabilities at our local family support groups I hear accounts of the difficulties experienced by parents as they get older and they struggle to meet the high level needs of their adult children.

It has become a cliché - much repeated in the recent election campaign - that we face a crisis of adult social care as a result of the pressures of an ageing population. But there has been little public recognition of that. In terms of costs, the social care needs of young adults with severe and complex disabilities now exceed those of the frail elderly. Partly as a result of improved medical care in childhood, more young people with severe disabilities are now graduating from children's to adult care services. Further, though the life expectancy of people with autism and severe learning disabilities continues to lag scandalously behind the general population, more people are living longer despite their disabilities. For example, whereas the life expectancy of a child born with Down Syndrome in the 1960s was in the early 20s, it is now over 50. We are justified in taking pride in these advances. But we have to recognise a responsibility to provide decent social care and acknowledge the long-term pressures on families.

As a result of drastic cuts in social care budgets over the past decade support for families with highly dependent adult children has been significantly reduced. Day centres that have now been closed once provided activities and social opportunities for adults with autism and learning disabilities. They also offered a few hours of vital respite to family carers. Cuts in these services - and in the provision of respite "short breaks" - have thrown increasing and often unmanageable responsibilities back on carers, most often mothers, some now well beyond pensionable age.

Many ageing carers are reluctant to request public services because of the impact of an apparently endless series of scandals in the care sector. It is now eight years since the exposure of neglect and abuse at the Bristol Winterbourne View "assessment and treatment" unit for adults with autism and learning disabilities. Yet this was followed by the exposure of grimly similar abuses at Whorlton Hall in Durham earlier this year. Despite official pledges to close such institutions, deficiencies of community services mean that people are still being admitted to them - often at long distances from their homes, and for an average stay of five years.

In 2018-19 the numbers of complex needs youngsters admitted to secure long stay beds continued to rise to nearly 4,000 in patients.

In the season of peace and goodwill to all, spare a thought for family carers - and, as we enter a new year with a new government, help to spread the word that we need more resources for adult social care. Those of us who rely on care staff are particularly aware of the need for better pay and conditions, to ensure, Brexit or no Brexit, the recruitment and retention of high quality care workers

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- Mary Langan is chairwoman of the Severe and Complex Autism and Learning Disabilities Reference Group (SCALD)