Written evidence submitted by Disabled People Against Cuts [ASC 015]
DPAC is a campaign group set up in 2010 to protect the human rights of disabled people and campaign for justice and equality.
As a founding member of Reclaiming Our Futures Alliance (ROFA) we seek a national independent living service capable of upholding and implementing Disabled people’s UNCRPD Article 19 rights.
Our vision for this has been shaped and developed through ongoing debate and discussion within the Independent Living Campaign, set up in 2011, in response to the then planned closure of the Independent Living Fund (ILF) and more recently through an independent living workshop at the National Deaf and Disabled People’s Summit organised by the TUC Disabled Workers Committee and the Reclaiming Our Futures Alliance in November 2017, a national Independent Living Campaign Conference and on-going discussions with disabled people and TUC Disabled members.
The social care and mental health systems are in crisis and as a result Disabled people’s rights to an adequate standard of living, to inclusion and equal participation in society are being taken dramatically backwards. Rising levels of charging are increasingly pushing Disabled people out of receiving social care altogether and leading to a growing problem of debt and arrears. The joint report of the Health and Social Care and Housing, Communities and Local Government Committees on the long-term funding of adult social care says:“The combination of rising demand and costs in the face of reductions in funding has placed the social care system under unsustainable strain. In its present state, the system is not fit to respond to current needs, let alone predicted future needs as a result of demographic trends.”
Research should be undertaken into actual and future levels of need and for corresponding investment.
Disabled people have long called for the radical overhaul of both the social care and mental health systems in order to better fit a human rights approach to disability.
At present, Disabled people’s experiences of independent living and being included in the community differ considerably depending upon impairment, for example people with learning difficulties, people who are neuro-divergent and people with energy-limiting chronic illness (especially medically contested diagnoses like Myalgic Encephalomyelitis ) are less likely to be found to have eligible needs under the social care system while people living with mental distress are largely confined to a separate system without access to the same sorts of support.
Instead, we are arguing for a system underpinned by the social models of disability and distress that can be accessed by all Disabled people regardless of impairment or perceived impairment. Our vision for a national independent living support system would also eliminate the post code lottery that exists within current local authority and CCG administered provision.
We believe that all independent living support should be free at the point of need and as the example of free personal care in Scotland has shown this could lead to savings in other areas such as the NHS budget. By building on what was most successful about the Independent Living Fund which had considerably lower overheads than local authority administered support4, it could also be more cost effective and achieve much better outcomes than the current system.
A new universal right to independent living, enshrined in law and delivered through a new national independent living service co-created between government and Disabled people, funded through general taxation, managed by central government, led by Disabled people, and delivered locally in co-production with Disabled people
National independent living service
The social care element of Disabled people’s right to independent living will be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people. It will be provided on the basis of need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation.
It will build on and learn from the success of the Independent Living Fund, closed by the coalition government in 2015,and the failures of the local authority care and support system, by the twelve pillars of independent living, whether it be in transport, education, employment, housing, or social security. The cross-government body will also be responsible for ensuring that intersectional issues are adequately addressed.
Funded through general taxation
Social care should not be funded through set precepts or levies as evidenced by the difficulties encountered in Australia with their National Disability Insurance Scheme. Funding through general taxation allows greater flexibility to respond to changing levels of need. This could be done, as advocated by a number of recent reports, through “soft” hypothecation, for example a rise in National Insurance that the public understands is in order to adequately fund social care. There is much evidence that the public would be in favour of tax rises in order to fund the NHS and social care, however there is also evidence that the public vote for lower taxes and the creation of a specific levy earmarked for social care has the disadvantage of insufficient flexibility to match demographic changes. Pinpointing tax rises to cover specific areas can also be problematic in that it places the spotlight on particular groups. Funding for social care should as with the NHS be out of general taxation. national independent living support service
For more information on the social model of disability and cultural model of Deafness see: https://www.inclusionlondon.org.uk/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness
For more information on a National Independent Living Support Strategy -
 An investigation by GMB union has revealed at least 166,000 people are trapped in debt for their social care. http://www.gmb.org.uk/newsroom/social-care-debt
 2Action for ME (2015) Close to collapse: an interim report on access to social care and advocacy for people with ME/CFS
 Both the Joint Committee report and the recently published Lord Darzi Review into Health and Social Care recommend the introduction of free personal care.
 The NDIS was financed by an increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of taxable income. This has proved to provide insufficient funding, and there are now concerns of a lack of public will for an increase.
 9Long-term funding of adult social care - First Joint Report of the Health and Social Care and Housing, Communities and Local Government Committees of Session 2017–19https://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/768/76810.htm#_idTextAnchor124 Citizens’ Assembly on Social Care: recommendations for funding adult social carehttps://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/citizens-assembly-report.pdf The Lives we want to Lead: the LGA green paper for adult social care and wellbeing – July 2018https://futureofadultsocialcare.co.uk/ The Lord Darzi Review of Health and Care Final Report: BETTER HEALTH AND CARE FOR ALL A 10-POINT PLAN FOR THE 2020s, Institute for Public Policy Research; Lord Darzi June 2018https://www.ippr.org/files/2018-06/better-health-and-care-for-all-june2018.pdf10 See Inclusion London’s report “One Year On: Evaluating the Closure of the Independent Living Fund”https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/independent-living-social-care-and-health/ilf-one-year-on/