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19 hours ago
6
John Harris is right about the lack of attention given to working-age adults with disabilities in discussions about the reform of social care (Shut away and ignored: thousands of disabled adults are at the frontier of the human rights struggle, 19 January). However, to the list of failings I would add the impact of the local authority charges that must be paid by those disabled and chronically ill people who need care in their own homes.
These charges (referred to by some councils as a “contribution”) are determined by a means test. Earned income is exempt from the assessment. But welfare benefits, including most disability benefits, are taken into account. Even those with no savings at all and who are entirely dependent on benefits must pay. When benefits go up, so do the charges – a practice described by one interviewee in my recent master’s research as the state “giving it you with one hand and taking it with the other”.
As a result, the charges (often described by disabled people as a “tax on disability”) cause real financial hardship in a population that already has relatively high levels of economic disadvantage.
My research demonstrated that charging practices often leave people who draw on care feeling devalued and unfairly treated by a system that undermines autonomy and independence. There is also a connection between rising care charges, deepening poverty and increased dependence on family for support.
Few people know about the income means test for care clients with low or no assets. Even the government admits that it has very little information about this population. As a result, their basic human rights are regularly ignored. The recently announced independent commission on the future of social care must address this failing.
Claire Bolderson
London
I read John Harris’s heartfelt article with increasing gratitude for the care and support that my daughter receives from Swallow, a local charity based in Somerset, empowering adults and teenagers to thrive, providing personalised, user-led support to more than 170 people with a learning disability.
My daughter now works in one of its training cafes, which provide a real service to the community and showcase what people with learning disabilities can offer to their community, given the opportunity.
However, the survival of this charity, along with so many others, is at serious risk in the future due to the increased costs of national insurance and the national living wage, which are not fully matched by the support available from cash‑strapped local authorities. The urgent problems facing social care providers cannot wait to be fixed in three or four years’ time. There are many excellent services and charities, like Swallow, providing just the sort of care that John Harris advocates and wishes for his son, but they may not have the funds to survive till then.
Jill Souter
Peasedown St John, Somerset
John Harris is absolutely right about the inadequate support for transfers of disabled youths to adult services. There are many ways to help, including drama. Our show It’s My Move recently toured 20 special educational needs and disabilities schools in the south‑east, and an online version, It’s My Choice, is available to download for schools anywhere.
Ray Downing
Artistic director, Face Front
I am pleased that John Harris points out that adult social care is not just a bed-unblocking service for the NHS but the custodian of care in the community for adults with disabilities and mental health problems. Many of these adults are elderly – but many are not. During the steady growth in social care funding last century, provision and staffing grew year on year, but never enough to keep up with the underfunded closure of long-stay hospitals, the increase in life expectancy achieved by improved public health and NHS treatment, and the expectation that disabled people should have a life rather than an existence.
As budgets were cut, and then stripped to the bone, inevitably care went down and care charges went through the roof. Any attempt to resolve the problem of funding became at first a political football and then too hot to handle.
It is not difficult to see what the choices are. One, have a national care service just like NHS, funded through general taxation or NI. Two, charge full cost to a person’s estate, only to be collected after they die. Three, require everyone to take out their own insurance and spread the risk. No decision gets made because everybody wants somebody else to pay and without political (and media and pressure group) agreement, it gets kicked into the long grass. There are few votes in sorting this but massive vote-loss potential in taking action.
The failure of politicians to resolve this is shameful and people live shortened, miserable and discriminated-against lives. They have no voice, so, before it happens to you or a loved one, we must be their voice and say: “Get social care funding done.”
John Beer
Farnham, Surrey
