Article 19 – Living independently and being included in the community

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Disabled people’s right to live independently and be included in the community is being undermined in three key areas: (1) a failure by government bodies to provide adequate funding for disabled people’s independent living /social care support; (2) Local Authorities are raising the eligibility threshold of state funded care; and (3) Independent Living Fund (ILF) is being closed to all ILF users in 2015. As a direct result of government policy, there is a worsening of the situation in the UK with respect to independent living.

Funding of support for independent living

It is recognised by civil society in England that there is a crisis in the provision of state funded care and independent living support for disabled people.[1] There is a £1.2 billion funding gap in state funded support for disabled people under age of 65[2] and England is £500 million a year short of ‘even maintaining the inadequate levels of provision’ for older people.[3] Central government has made significant cuts to local government funding; Local Authorities (LAs) have responded in turn with equally significant cuts in to social care and independent living support. In March 2014 there will have been £2.68 billion cut in the spending on adult social care over 3 years, a 20% cut of net spending.[4]

As a result of these funding cuts, disabled people’s support is being reduced to a minimum ‘clean and feed’ model of care, which completely undermines disabled peoples Article 19 rights. These cuts are removing all choice, control, dignity and independence. They are making work, volunteering and participation in the community and in cultural, social or political activities increasingly impossible. Independent living as a right is being systematically dismantled. Research findings illustrate this: nearly half (47%) in a survey said say they are withdrawing from society because the services they receive do not enable them to take part in community life[5], over one third (34%) being unable to work or take part in volunteering or training activities after losing support services[6], over half (53%) saying they felt anxious, isolated, or experienced declining mental health because they had lost support services[7].

There is evidence that local authorities will increasingly be charging for local services for people with learning difficulties. Nearly half of people with learning difficulties have had their support cut or their charges increased. In the year April 2011-12, 17% of people with learning disabilities saw a reduction in their number of hours of support; 13% were given less money to spend on their support; 18% have had their service charges increased; and 2% of people who had lost their support entirely due to their local authority changing its eligibility criteria.[8]

Raising of the eligibility threshold for support

An increasing number of Local Authorities have narrowed the eligibility criteria for care and support for independent living to ‘substantial needs’ which means those deemed to have low or moderate needs will not receive state funded support. In 2005-06, 40% of councils provided care to those with moderate needs, but by 2011-12 this had dropped to 18%.[9] The government has proposed that the national eligibility criteria be set at ‘substantial needs’[10] and as a result over 100,000 disabled working age adults are set to miss out on essential care[11]. There are 320,000 fewer people receiving local authority support in 2012/13 than in 2005/6, this represents a 26% reduction in the total number of recipients of care.[12] Also the costs of care are rising.[13] On average service users were paying £588 per year more in real terms in 2012/13 than they were paying in 2009/10.[14] Many disabled people cannot afford these rises and have to suffer an inadequate level of care due to the cuts in state funded care.   This has led to over a third (36%) saying they were unable to eat, wash or leave their homes due to underfunding.[15]

Independent Living Fund (ILF) closing

The Independent Living Fund (ILF) provides financial support which enables disabled people with high support needs to choose to live an independent life in the community rather than in residential care. The Fund closed to new applicants in 2010. In March 2014 government decided to close the ILF in June 2015 and transfer responsibility for meeting the care and support needs of current ILF users to Local Authorities.[16] Funding will be devolved to each local authority and to the devolved administrations on the basis of the pattern of expenditure in 2014/15.[17] But Local Authorities have not committed to ring-fencing the funding, so it may well be used for purposes other than care and support. Without the ILF level of funding independent living will be lost, and the Court of Appeal has recognised the impact of this as an “inevitable and considerable adverse effect which the closure of the fund will have, particularly on those who will as a consequence lose the ability to live independently”.[18] Yet the ILF is a cost effective model of funding[19], which supports independent living and inclusion in the community, while Local Authorities increasingly only provide funding for a basic ‘clean and feed’ model of care which falls far short of the requirements of article 19.

A further issue is that support budgets do not allow for communication support and nor are support workers adequately trained in appropriate methods of communicating with disabled people. People’s support needs around communication and social interaction are often aspects of life which are neglected by social care assessments.[20] This limits what people are able to do with their care package. In a survey, nearly half the disabled adults said services they receive do not enable them to take part in community life.[21]

[1] http://careandsupportalliance.com/about/

http://www.ageuk.org.uk/home-and-care/campaign-for-better-care/what-is-care-in-crisis/

[2] http://www.scope.org.uk/news/other-care-crisis

[3] http://www.ageuk.org.uk/latest-news/500m-funding-gap-for-older-peoples-social-care-revealed

[4] http://www.adass.org.uk/Content/Article.aspx?id=1034

[5] http://www.scope.org.uk/campaigns/other-care-crisis

[6] http://www.scope.org.uk/campaigns/other-care-crisis

[7] http://www.scope.org.uk/campaigns/other-care-crisis .

[8] Learning Disability Coalition, Social Care in Crisis: the need for reform, (April, 2012).

[9] http://www.ageuk.org.uk/Documents/EN-GB/For-professionals/Research/Eligibility_thresholds_briefing.pdf?dtrk=true

[10] http://www.nationalhealthexecutive.com/Integrated-care-Social-care/lamb-sets-national-eligibility-criteria-for-social-care

[11] http://www.scope.org.uk/About-Us/Research-and-Policy/Publication-directory/Ending-the-other-care-crisis

[12] http://www.pssru.ac.uk/archive/pdf/dp2867.pdf

[13] http://www.learningdisabilitycoalition.org.uk/download/Social%20Care%20-%20The%20Continuing%20Crisis.pdf

[14] http://www.ageuk.org.uk/Documents/EN-GB/Campaigns/CIC/Care_in_Crisis_report_2014.pdf?epslanguage=en-GB?dtrk%3Dtrue https://www.gov.uk/government/collections/local-authority-revenue-expenditure-and-financing

[15] http://www.scope.org.uk/news/other-care-crisis

[16] http://www.dwp.gov.uk/ilf/news/

[17] http://www.parliament.uk/documents/commons-vote-office/December_2012/18-12-12/22.DWP-Independent-Living-Support.pdf

https://www.gov.uk/government/speeches/statement-on-the-future-of-the-independent-living-fund

[18] http://www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWCA/Civ/2013/1345.html&query=bracking&method=boolean

[19] According to the ILF it only has about 2% overhead costs compared 16% on average for Local Authorities. The ILF provides on average £337 per week per person– compared to Winterbourne View private hospital where, on average, it costs £3,500 per week.

[20] Brady R. (2014) Facilitating the voice of disabled people and carers in the design of new eligibility systems proposed under the Care Bill: Feedback from carers and social care users on the draft eligibility criteria DH Engagement events with local authorities on the draft eligibility regulations, Scope.

[21] Scope (2012), The other care crisis: Making social care funding work for disabled adults in England, http://www.scope.org.uk/About-Us/Research-and-Policy/Publication-directory/The-other-care-crisis

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