Disability experts from ISER and the University of East Anglia recently presented new evidence on the true costs of disability and independent living to the House of Lords and called for rates of disability benefits for older people to match more closely the costs of living with severe disabilities. They also called for an eleventh-hour turnaround on government plans to close the Independent Living Fund
The research shows that older disabled people face a gap between the true costs of their care, and the disability benefits and publicly funded social care they receive, especially at high levels of disability.
Professor Stephen Pudney from ISER, Professor Ruth Hancock, of UEA’s Norwich Medical School and Dr Marcello Morciano from UEA will present new research from UEA and the University of Essex that reveals disability benefits and publically funded social care are not meeting the true costs of disability in later life. The research also shows that rebalancing disability benefits towards those with the most severe disabilities could reduce some of the worst poverty among older disabled people
Professor Hancock said: “It is often presumed that because disability benefits for older people are largely not means-tested they must be less well targeted than social care, which is means-tested.
In fact our research reveals that Attendance Allowance and Disability Living Allowance payments to older people display a degree of income targeting, since low-income people are more likely to have severe disabilities and more likely to claim their entitlements.
Moreover the failure of disability benefits to reach those older disabled people in most need is far more significant than any concern that benefits may be going to people who don’t need them.
Our research also reveals public support for the costs of disability in later life falls far short of the costs that such disability brings – by around £165 per week at the highest disability levels. As a consequence, severely disabled people can be plunged into deep poverty by the costs of their disabilities.
Our analysis suggests that policymakers should consider altering the rates of disability benefits for older people to give more help to those with the most severe disabilities. But they will also need to ensure that increased numbers of older people with the highest levels of disability receive these benefits.
Such alterations could be made without spending any more on disability benefits for older people and without the need to resort to more means testing.”
The ‘Disability and care needs in the older population’ project aims to provide robust, independent empirical evidence to sharpen policy judgements on reform of care services and disability benefits for older disabled people. It is a collaboration between UEA and the Institute for Social and Economic Research at the University of Essex.
The House of Lords event will be hosted and chaired by Baroness Campbell of Surbiton, former commissioner of both the Equality and Human Rights Commission and the Disability Rights Commission. Both projects have been funded by the ESRC.
The second study, led by Dr Tom Shakespeare at UEA reveals that the transition after the Independent Living Fund, which closes at the end of June, has left disabled people facing uncertainty, vulnerability and stress as a result of poor communication and lack of understanding from local authorities
Dr Shakespeare said: “At the moment 18,000 disabled people rely on the fund to pay for the assistance they need to live in the community.
“For the first 12 months after closure, £262 million will go to local authorities – although money will not be ring-fenced for existing users.
“Former ILF users have undergone local authority assessment and will receive a new funding package, which is likely to be less than their previous support.
“We interviewed ILF users from six local authorities in Greater London and East Anglia to see how this policy change will impact them.
“We found that local authorities are seen as less committed to independent living. Fears included: getting a different social worker each time, lack of understanding of independent living, and very bureaucratic assessment processes. The former ILF on the other hand was seen as more approachable, more accessible, and more committed to promoting autonomy of users.
“Our research also shows that transition arrangements between ILF and local authorities have generally been poor, with a lack of communication and clarity. This has caused considerable stress and distress to former ILF users, some of whom feel that they are not being treated like human beings.
“There is also considerable concern that funding for independent living is not ring-fenced in the long term, and that local authorities may spend this budget on other things after the initial transition period. One of the people we interviewed, for example, said they were afraid of being left bed-bound due to funding cuts.
“We also found that different local authorities are coming to very different judgements about how much they will fund people. One user described it as a ‘postcode lottery’, dependent on how local authorities interpret needs and rights to independent living – with people treated differently in different locations.”
This research, ‘Closure of the Independent Living Fund: how is it affecting the users?’
is part of a wider Economic and Social Research Council-funded (ESRC) ‘Personal Assistance Relationships’ project.
For further information please contact Laura Potts in the UEA press office who are leading on media relations on this research project:
Tel: +44 (0)1603 593007 Mobile: +44 (0)7500 607991