A tax on the need for support?
The Independent Living Strategy Group recently carried out
a study of local authority charges for social care, exploring
in particular whether and to what extent the practice of charging
is undermining people's wellbeing, the primary purpose of social
care services as set out in the Care Act 2014. We examined some key
features of the way local authorities implement
charges and gathered evidence on the impact of charges on
disabled people. Our study comprised of two parts: an
online survey of more than 600 people who had received a community
care assessment; and a Freedom of Information request to 152
English local authorities.
Charging disabled people for their care and support is
driving many of them into debt and forcing them to cut their
spending on food or heating, according to new research by a network
of disabled people's organisations and their allies.
The study found that 4 in 10 of those responding to a
survey had experienced a substantial increase in charges over the
last couple of years. Nearly half (43%) had had to cut back
on their spending on food to pay for care and 2/5 of respondents
(40%) said they had had to cut back on heating costs to pay for
care and support.
The study concludes that charging for the support disabled
people need to go about their daily lives is "unfair,
counterproductive and undermines the primary purpose of the care
and support system".
The effect of charging, it says, is often to "drive
disabled people into care poverty, and to create confusion, stress
and complexity in an already overly burdened bureaucratic system"
through what is effectively "an unhelpful and unnecessary tax on
disability and old age".
All but one of the local authorities, Hammersmith and Fulham,
impose charges on some of their service-users. The study heard from
one disabled person who benefited from Hammersmith and Fulham's
no-charging policy, who said: "Social care is a human right. It's
an essential service like education or the NHS. "It's not ethical
to charge for it, in effect it's an extra tax."
Charging for care, says the study, only raises "modest"
sums of money - about 12% of spending on care and support - but has
a "profound impact on the individual", with an average charge per
year of more than £2,000 (£2,243).
Baroness Jane Campbell (pictured), who chairs ILSG,
said: "Support provided under the Care Act is meant to improve the
wellbeing and independence of disabled people. By charging many for
that support, the system is making a mockery of the spirit of the
legislation and causing worry, stress and poverty. Charging raises
a relatively small sum of money which is pushing up costs
elsewhere. The financial impact of personal care neglect such as
pressure sores, kidney infections or falls, as well as stress
related illnesses, means finding extra resources for the NHS."
The group have called on the government to scrap all charges,
but if it refused to do that, ILSG said, it should introduce other
measures to "mitigate" against the "worst effects" of charging.
These should include monitoring the number of people who decline
or decide to stop receiving council-funded support after a charge
is imposed or increased.
Only 17 of the 152 councils said they knew how many
people had declined or abandoned social care packages they had been
assessed as needing once they were told how much they would have to
All councils should also carry out an equality impact assessment
of their charging policies, said the group and it said that all
councils should introduce an "early warning" system to identify
people getting into charges-related debt, introduce a "breathing
space" before any debt collection action is taken, and provide
access to support to manage such debts.
Sue Bott, deputy chief executive of Disability Rights
UK, one of ILSG's members, said: "If councils are to persist in
this iniquitous tax on disability, they must at least reintroduce
some consistency and clarity to their approach. The many councils
that have failed to conduct an equality impact assessment - and to
monitor the numbers of disabled people driven out of the care
system by charging - must also get their act together."
The government is expected to publish its long-awaited green
paper on adult social care funding within weeks.
The Independent Living Strategy Group has been working on
protecting and promoting disabled people's rights to independent
living in England since 2013.
Its members include disabled people who were part of the
independent living movement during the 1970s and in later years, as
well as younger activists, other individuals and organisations
concerned with independent living.