Defend Independent Living Rights
Stop the Closure of the Independent Living Fund
Stop Disability Cuts
The European Network on Independent Living is calling on disabled people’s organisations across Europe to mobilise together on or near Monday 5 May 2014 through events, lobbying and protests to oppose the deep and ongoing cuts affecting disability services and benefits.
As disabled Independent Living Fund users, close family members and allies campaigning to defend independent living rights and stop the Fund’s closure, we urge disabled people’s organisations and the broader disability movement in England, Wales, Scotland and Northern Ireland to actively support this important day.
Even small events and public activities will help to raise awareness and act as a focal point for those who want to work together to oppose cuts to services and benefits, including the proposed closure of the Independent Living Fund in fifteen months.
It is vital that we also use this opportunity to reflect and learn from the mistakes associated with the public service reforms of a decade ago and the policies of ‘welfare reform’ and ‘personalisation’, including the use of ‘tick-box’ processes such as the Work Capability Assessment and the Resource Allocation Systems in social care to replace the individual and detailed assessment of need.
The fear of a ‘demographic time-bomb’ associated with growing numbers of older disabled people in their eighties and nineties, creating an age imbalance in a static or falling population, has been used to justify the raising of the pension age and the way pensions are calculated, the erosion and privatisation of the ‘welfare state’, cuts to health and social care, changes to the benefits systems, and latterly ‘austerity’.
But a growing population associated with increasing birth rates and the immigration of young adults, improved productivity and the greater fitness and activity levels of older people means the ‘demographic time-bomb’ in Britain may be a myth.
The political climate that has undermined independent living and disability rights, and is using positive ideas such as ‘direct payments’ and ‘individualised funding’ as vehicles for shifting financial responsibility for meeting social care needs from the state to the individual needs to be challenged.
We should no longer ignore the needs of the tens of thousands of children who are compelled by their family circumstances to be ‘young carers’ or the four hundred thousand disabled people confined to residential care or the way new concepts such as ‘prevention’, ‘reablement’ and ‘recovery’ are used to deny hundreds of thousands of disabled people the services they need.
Those who argue disabled people have been ‘liberated’ and the welfare state is ‘broken’ are wrong, and only do so in pursuit of a very negative agenda associated with privatisation and greater inequality between the ‘haves’ and ‘have nots’. The same people have been passive while the Independent Living Fund has been dismissed as ‘anachronistic’ and ‘paternalistic’, and the experience and wishes of the Fund’s users and their families ignored.
The disabled people’s movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions.
The innovations of the ‘independent living movement’ such as the ‘personal assistance’ approach, specialised information and training, and the self-assessment of personal needs have been marginalised. While our organisations and projects have struggled financially since the millennium, tens of millions of pounds have flowed towards those who supported the development of ‘personalisation’ and its ‘evidence base’.
But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so fifty-two weeks a year without any financial rewards, are defined as being ‘economically inactive’.
A jigsaw of social equality has been slowly constructed since the end of slavery and the emergence of the Chartists through the right to vote, women’s suffrage, universal healthcare, the legalisation of same-sex relationships, reproductive rights for women, equal pay legislation, and the outlawing of racism and homophobia.
Limited advances in tackling disability and age discrimination are now being reversed, with the statutory right to an individual assessment of need by local councils being replaced. Local authorities are to be given the power to restrict a disabled person’s rights or freedom of action in pursuit of a legal duty to prevent or reduce a person’s need for social care services or personal assistance.
Social equality for all will never be achieved unless the needs of disabled children and adults are acknowledged, assessed and met as of right, and those children and young people compelled into a caring role within their family because of a lack of social services support are freed from this and allowed to develop socially in the same way as their peers. But this would require an unparalleled redistribution of wealth, and the redrawing of our society’s social priorities.
We believe disabled people of all ages should: have the right to live in the community free of the threat of segregation; be supported to stay healthy, safe and free of distress; and be freed from the harsh means-tests that are a feature of social care. Young disabled people in particular should be supported to pursue their dreams and aspirations free of the social barriers and discrimination that impeded many in the past. And because of the vital social role played by full-time family carers, they should be paid a social wage of at least fifty percent of the average wage of a skilled worker.
Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.
The ‘European Independent Living Day’ is an opportunity we should not waste.
Abi Vanes, sister of ILF user
Aine Young, family of ILF user
Andy Greene, Islington Disabled People Against Cuts
Angela Mountstephens, sister and carer of an ILF user
Ann Walawalkar, parent of an ILF user
Anne Novis MBE
Anne Pridmore, ILF user and Director of ‘Being the Boss’
Anne Rae, Chair of Greater Manchester Coalition of Disabled People
Ann Rainey, ILF user
Anne Whitehurst, ILF user
Ashleigh Myatt, personal assistant
Bill Riddall, Centre for Independent Living Northern Ireland
Brian Glaves, family carer and husband of ILF user
Brian Hilton, ILF user
Bob Ellard, member of Disabled People Against Cuts
Brenda Bayliss, mother of an ILF user
Caroline Martin, mother of an ILF user
Cath Gibson, ILF user
Charles Rainey, brother and carer of an ILF user
Christine Pickthall, ILF user
Christine Squires, ILF user
Christine Stringer, parent of an ILF user
Clare Palmer, mother of an ILF user
Colin Griffiths, ILF user
Colm Murphy, family of an ILF user
David Vanes, brother-in-law of ILF user
Debbie Domb, ILF user
Debbie Jolly, co-founder of Disabled People Against Cuts and Board member of the European Network on Independent Living
Dessie Allen, brother of ILF user
Dolores Hannigan, ILF user
Ellen Clifford, Disabled People Against Cuts
Emma Dakin, ILF user
Fred Bayliss, father of ILF user
Gabriel Pepper, ILF user
Helen Brown, personal assistant
Ian Atkinson, Gateshead Access Panel
Ian Kenny, ILF user
Jacqui Armston, personal assistant
James Corker, carer of ILF user
Jan Turner, Project Manager of ‘Being the Boss’
Jean Allen, mother of ILF user
Jean Glaves, ILF user
Jenny Hurst, ILF user
John Aspinall, ILF user
John Buckley, parent of an ILF user
John Gilliland, father of ILF user
John Kelly, ILF user
Juliet Marlow, ILF user since 1991
Kieran Coffey, ILF user
Kieran McCarthy M.L.A. Strangford (Northern Ireland)
Kieran Walawalkar, ILF user
Laura McCrum, ILF user
Lianne Bayliss, ILF user
Linda Burnip, parent of an ILF user and co-founder of Disabled People Against Cuts
Lise Marron, ILF user
Mandy Dexter, personal assistant
Margaret Coffey, mother and carer of ILF user
Maria Nash, ILF user
Marie Thompson, sister of ILF user
Mark Williams, ILF user
Michael Bayliss, brother of ILF user
Michelle Allen, personal assistant
Mick Hutchins, ILF user
Neil Bayliss, brother of ILF user
Niqi Rainey, sister-in-law and carer of an ILF user
Paul Taylforth, step-father and carer of ILF user
Paula Peters, Disabled People Against Cuts
Peter Coffey, father and carer of ILF user
Philomena McCrory, Centre for Independent Living Northern Ireland
Rahel Geffen – CEO Disability Action in Islington
Richard Parker, ILF user since 1991
Rob Punton, ILF user, Community Navigator Services and Disabled People Against Cuts
Robert Allen, ILF user
Ronnie Allen, brother of ILF user
Rosemary Kelly, ILF user
Rosemary O’Neill, CarerWatch
Roxanne Homayoun, ILF user
Sean O’Hare, ILF user
Sophie Partridge, ILF user
Stuart Bracking, ILF user
Sue Lovett, English Campaign for a Fair Society
Surojit Walawalkar, parent of an ILF user
Theresa Murphy, family of an ILF user
Tracey Lazard, Chief Executive of Inclusion London
Ursula Corker MBE, carer of ILF user
Valerie McCarthy, sister and carer of an ILF user
Vin West, parent and carer
Wendy Mortimer, personal assistant