In 2017 the Independent Living Strategy Group - an informal grouping of disability organisations and activists, chaired by Baroness Jane Campbell - put out a request for examples of where people had tried to challenge how their local authority was implementing the Care Act. The most common experience we were told about was where people challenged the amount they were being charged for community care (which could also take the form of a charge against their direct payment).
This is a long-standing and much contentious issue. We are talking here, not about residential care but about the support people need to carry on living in their own homes. Local authorities do not have to charge for community care but, as their budgets have been progressively cut back, they have increasingly been opting to use their discretionary powers to charge. Nevertheless, there remains a great deal of inconsistency across the country as to how much they raise in charges - ranging from 4% of the total spent on adult social care by one local authority through to 46%.
The current political and public debate about funding for social care is too often confined to the issue of whether older people should have to sell their homes in order to fund residential care. But more people (of all ages) receive social care support to live in their own home and many will have been subject to a financial assessment to determine how much they should contribute towards the cost of their support.
There is a dearth of up to date information about charging and its impact: a 2008 survey found evidence of people giving up social care support because they couldn’t afford the charge, and almost a third said they didn’t feel their disability-related expenditure was taken properly into account in the means-test their Council applied. If the impact of charging was significant 10 years ago it is likely to be even more so today, given that more local authorities are now charging and that disabled people have been considerably disadvantaged by the impact of various welfare reforms.
Most disabled people will tell you that they have additional costs directly related to their experience of impairment/illness and/or disabling barriers. A 2014 Scope survey found that on average these additional costs amount to £550 per month. These costs stem from not only the costs of extra heating, specialist equipment, diet, transport etc but also, as the report found, from the fact that goods and services marketed to disabled people commonly cost more than those aimed at non-disabled people. Daily life just costs more if you’re disabled.
Disability living allowance/Personal Independence Payments and Attendance Allowance are an acknowledgement of the additional costs of being disabled - which is why they are not means-tested - but the level at which they are paid is nowhere near the actual costs. In addition, local authorities are allowed to include the care component of DLA/PIP, and Attendance Allowance in the means-test for social care.
Since the late 1990s, earned income is not taken into account in the means test for social care - or at least it shouldn’t be - but savings and pension income is. This means that, not only can disabled people be penalised if they have been able to build up savings, but that they can experience a dramatic ‘cliff edge’ in their standard of living once they retire or are forced to give up work because of illness or impairment. Households with at least one disabled adult are more likely than non-disabled households to be in debt and unable to build up savings, less likely to be able to pay for an unexpected but necessary expense, and more likely to be living in poverty. Small wonder that many people (we don’t know how many) never get the care that they have been assessed as needing because they can’t afford the charge made by their local authority. As one person told One Place East, a disability organisation in Redbridge:
So there I am, Mrs Smith, desperate for this care, I can't wait for the financial assessment because I don't know when this is going to be and at the same time I'm scared about what the true cost of that care is going to be and that assessment officer who is there to put all these things in place can't advise me so I'm going to go, no thank you dear.
One local Council, however, has bucked the trend and abolished charges for social care for its disabled and older residents. The Labour opposition in Hammersmith and Fulham had made a commitment in run-up to the 2014 local elections that, if elected, this is what they would do….and they kept their promise, arguing that this was “getting rid of what was in effect a tax on disability”.
If one Council can do this, why not others? Is it really worth spending money on means-testing and collecting the charges? Is it right that a system which is intended to provide the support people need to go about their daily lives is also designed in such a way as to reduce their standard of living to just above the poverty line? Is it right that the often haphazard and inadequate way that charges are calculated means that many face the decision of either falling below the poverty line or refusing the help they so desperately need? Is the long-awaited Green Paper likely to tackle any of these issues?
The Independent Living Strategy Group is determined to raise the issue of charging for social care when the Green Paper finally emerges. To help inform the debate we are carrying out a survey of people’s experiences and also seeking information from local authorities (through a Freedom of Information request). We hope to publish the findings in the summer.