I found myself nodding in agreement at John Harris’s worries about his son’s future as he leaves full-time education to enter the world of adult social services (Social care for disabled adults is in as much crisis as support for elderly people – so why is the government silent about it?, 5 October). John’s concerns were shared by my wife and I as our disabled daughter moved from her specialist residential further-education setting 17 years ago.
However, with her gutsy approach and strong financial support by way of 24-hour care from our local council, she is able to say, “I love my life”, and has expressed this in a little book, How I Flourished, published by Lewisham Adult Learning. This despite being quadriplegic, having no speech and being dependent on her personal assistants for all the necessaries of life.
I could wax at length about her wheelchair dancing, the “proper job” she secured with a wonderful charity (the Deptford-based Entelechy Arts), her painting, thirst for maintaining social relationships involving long and tiring overseas travel, and so on. The blunt truth, however, is that we, as her parents, have always needed to be closely involved in managing her care and safety, and for taking up the opportunities to broaden her landscape. We are aware that she has had a much better deal than so many people in adult care institutions.
Now we are at an age when the reality of our own mortality weighs heavily. Our daughter will have no close relatives or friends at hand when we depart this world. At that point, the good life that we have striven to provide for her will be cast to the winds of dire adult social care institutions.
Chris Ball
Blackheath, London
I was pleased that John Harris highlighted the crisis facing working-age disabled adults in the social care system. Too often, social care is presented primarily as a service for older people, obscuring the fact that hundreds of thousands of disabled adults and children rely on support throughout their lives to participate in their communities, sustain relationships, access education and employment, and live the life they want to live.
The focus on older people also overlooks the diversity of support needs and variety of provision. Social care is not one thing. Support may come from home care workers, personal assistants (PAs), supported-living facilities, unpaid family carers and community organisations. For many disabled people, social care is not simply about receiving care, but about having choice and control over how support is organised and delivered.
In my family, we have experience of employing PAs. They work directly with disabled people, providing support with daily life in a manner and at a time that suits their choices and lifestyle. This approach recognises social care as the means through which disabled people secure the rights, opportunities and independence that many others take for granted. While personal assistance is not the right option for everyone, it is an important part of the social care landscape that remains largely absent from public debate.
As John Harris notes, disabled people’s organisations are calling for a national independent living service to sit at the heart of reform. This begins with recognising the diversity of people’s support needs and aspirations, and moving beyond seeing social care as a service for only one group, delivered in only one way. Without this broader perspective, reform will continue to fall short.
Dr Louise Lawson
Lecturer in social policy, University of Glasgow
Thank goodness for John Harris drawing attention to the total absence of any discussion around younger adult social care. Our son is 35 and we too experienced good support in school, but a terrifying cliff edge after that.
Our experience of 15 years of adult social care has included never-ending promises from social services amounting to nothing; the occasional motivated social worker who gets nowhere and the next time we call has left the service; our local Labour MP saying kind words but no action to follow; unqualified community health workers, with obscure job titles and only first names, who give up after a few months, and shortly afterwards our son is discharged.
Despite having a lasting power of attorney, as parents we have been humoured, but ignored, as our anxious son declines treatment because he just wants everyone to leave him alone; apparently he has capacity even though he is in mental turmoil. Our son got steadily worse with crippling, overarching anxiety that was never treated effectively over several years, leading eventually to a psychotic episode. He was sectioned under the Mental Health Act and, as legal requirements then kick in, he got to see a clinical psychiatrist for the first time. Only then was he prescribed medication and given a place in supported living.
There he is fed and sheltered by a service with very limited resources, among other residents with such different mental health needs that he can have no connection with them. We had to initiate and organise six-monthly reviews with a GP ourselves, as well as a review after four years with a community health psychiatrist, otherwise the medical profession would have forgotten him and left him on powerful antipsychotic medication indefinitely.
What happens when we can no longer advocate for him?
Name and address supplied
