In November 2017 Disabled People Against Cuts and Disabled People’s Organisations involved in the Reclaiming Our Futures Alliance held a national Independent Living Campaign conference. The aim of the day was to take stock of the key barriers to independent living that Disabled people who use adult social care services face and assess how far the situation has deteriorated in the last year but also to explore a shared vision for an independent living support system that can truly uphold our rights.
Below you can find notes and films from the day as well as copies of hand-outs and presentations.
Papers disseminated at the conference:
• NHS Continuing Healthcare Cost-Caps – Where we are with Warehousing – Fleur Perry warehousing update
• Social Care is Broken Beyond Repair – So what should replace it? – Peter Beresford and Mark Harrison examine the problems and potential solutions Harrison and Beresford LB final
• The need to campaign against institutionalisation – Simone Aspis Simone blog
A second court case against the DWP on the closure of the Independent Living Fund (ILF) will take place at the Royal Courts of Justice on the 22nd and 23rd of October. It is expected to last one and half days.
There will be a vigil outside the courts from 12.30 on the 22nd to support the ILF users taking the case and to support our right to independent living as enshrined in the UN Convention on the Rights of Persons with Disabilities- article 19
Article 19: “Living independently and being included in the community”, states that “disabled people have a right to live in the community; with the support they need and can make choices like other people do”.
Please join with us to show your support!
The closure of the ILF has obvious implications for the UK’s chances of meeting such obligations. Most importantly for those disabled people who will lose this financial support they will lose any independence and choice in their lives. You can listen to how this vicious attack will affect disabled people at these links.
It’s been a busy few days for DPAC gathering evidence on the cumulative impact of cuts on disabled people, and on the crisis in independent living.On the 25th we heard moving and powerful testimonies of how the Government are ruining lives through their austerity regime. Disabled people are faced with a range of cuts and so called ‘reforms’ which are contravening our basic human rights. We are faced with stark choices between eating or heating while having our dignity stripped by a range of psychological attacks at the same time as having support removed.
Testimonies will be sent to the UN rapporteur on disability-thanks to everybody who came to London to tell their stories and to those that submitted their experiences through email. This event was originally arranged by Just Fair, however due to the rapporteur being unable to come to the UK due to illness DPAC and Inclusion London stepped in to run this at the last minute, so we could get these important stories out to the UN.
On the 26th the morning saw a hugely successful protest on fuel poverty organised by DPAC, Fuel Poverty Action, the Greater London Pensioners and UKUncut: ‘Bring down the Big Six – Fuel Poverty Kills!’ against the increase in fuel poverty deaths and increasing profits and prices of the big 6. Supporting groups included No Dash for Gas, Campaign Against Climate Change, Climate Revolution, Young Friends of the Earth, Frack Off London, Power for the People, Barnet Alliance for Public Services, Lewes Against the Cuts, SOAS Energy & Climate Change Society and Southwest Against Nuclear. There were also protests in Oxford, Lewes and Bristol.
In the afternoon of the 26th the Emergency meeting on the crisis in independent living took place at parliament hosted by DPAC and Inclusion London. An event originally planned by Just Fair to launch their report to the UN rapporteur which DPAC and Inclusion London stepped in to run with a new focus on the crisis in independent living. This was in response to the successful appeal outcome at the courts on the Independent Living Fund-and the continuing awareness of the crisis for ILF users, those trying to access local authority support and the Government’s apparent non-compliance with article 19 of the UN Convention on the Rights of Persons with Disabilities.
The afternoon launched DPAC’s report on the crisis in independent living and cumulative impacts of the cuts, one of many that DPAC is working on, as well as the film by Mary Laver an ILF user. The afternoon was complimented by speeches from John Evans and reflection on the past battles for independent living.We heard from the brilliant Louise Whitfield (one of the solicitors in the ILF case) and were treated to an excellent DPAC theatre performance which brought to life the reality of impacts on disabled people and the different barriers we face.
Despite extremely short notice the event was well attended by MPs and those from the Lords. Kate Green , Hywell Williams, Katy Clarke, Anne Begg, John McDonnell, Jim Shannon, Andy Slaughter, Baroness Campbell, Baroness Wilkins and a host of others including Mary Laver’s MP. Apologies were sent from Anne McGuire, Caroline Lucas, Lucy Powell, Jeremy Corbyn and Theresa Pierce
Mike Penning ‘our’ new minister for disability was invited but did not respond or send apologies!
Many thanks to all that attended, supported and worked so hard towards the afternoon-especially the many DPAC members and supporters that wrote to their MPs and publicised this. Some may ask why English national formal disability organisations with much more money and resources than us aren’t putting their energies into these types of activities all the time- we don’t have any answers or understanding on that.
We will have a more detailed report on the Emergency meeting on the Crisis in Independent Living event in Parliament with film and photos soon
As more and more people are finding that they go from hours to minutes of support from their local authorities, as ILF users are threatened with being passed into a local authority system that cannot serve the aims of independent living, and as independent living is becoming more of a mirage every day, despite article 19 of the UN Convention on the Rights of Disabled Persons (UNCRPD) – we look at Angela’s story. Angela contacted DPAC several months ago when it was clear that her local authority were carrying out practices that appeared to be against protocol -legal representation was found. However, this could not stop the real threats to the reduction of Angela’s support or to her right to independent living:
I’m 28 years old – but if they take away my social care it’ll be the end of my life.
I’m disabled but I want to enjoy life the way any other young woman can. I have two volunteer jobs.
Now they’re threatening to take this support away – leaving me isolated at home, forcing me to go to bed at 9.30 every night, not even able to go to the toilet.
I did a degree in psychology and criminal behaviour. It was interesting but nothing like CSI! During one of the seminars, I met a representative from Headway, the spinal brain injury charity and I’ve been volunteering there for the last two and a half years. I won Luton’s Volunteer of the Year Award last year.
I’m constantly looking for paid work. I don’t sit around watching TV, I never have, I don’t believe in that. I would love to get a paid job. I have tried. I’ve been for interviews for customer services and as a support worker. Even though we are supposed to have equal opportunities, people still look at my wheelchair.
I was hit by a car when I was two. I have a spinal brain injury which has affected my left side. I can’t walk because I have no balance, so I use an electric chair.
When I turned 18, Social Services helped me find a place to live and be independent. Social care gave me total freedom to get up, go to bed, go to the toilet and settle into my new home and life. With decent social care I’ve been able to do whatever I want. I can go out and enjoy life the way any other young woman can. I have two volunteer jobs, and I can go shopping and see my friends.
Suddenly, out of the blue recently they’ve tried to cut my care from 20 hours a day down to three. I was shocked, upset and angry. I tried to negotiate with the woman at the Council and was told “life’s not perfect for anyone”. I don’t expect it to be perfect – I want to have a life like any young woman.
I’d have no freedom. I’d have to be in bed at 9.30pm and get up at 7.30am, with no way to go to the toilet in the night either. My carer wouldn’t have time to cook me fresh food (microwaved horsemeat lasagne here I come!).
Imagine living this life for the next 50 years. If I was stuck with that forever, I would give up and lose my passion for living. I would find a way to end my life.
What I’m asking for isn’t unreasonable. I just want flexibility and freedom and a little support. I’m not asking for the world. But I do want dignity and I do want freedom. If I wasn’t in this wheelchair I would have those things, so why shouldn’t I.
What’s worse is it isn’t just me. It isn’t just about reducing how much support people get. They’re taking away all support for some disabled people. Every disabled person who needs support should get it – this is about the basic dignity and freedom to live our lives.
The government has what they call a spending review coming up – it’s when George Osborne decides: How will he spend our money? What do we care about as a country?
Will you sign the petition I’ve started and send George Osborne a message loud and clear that we want adequate support for disabled people to live independently? They spent more than a billion pounds just on the Olympics village where the athletes stayed last year, surely they can put at least that much into social support for us? We only have a few weeks!
Please sign the petition and write to us at firstname.lastname@example.org with your stories. We are also looking for stories from people who were stopped from applying for Independent Living Fund support in 2010 when the Coalition closed it to new applicants.
This is not just about ‘care’ it is about independent living, the right to independent living and support for all. It is about the UK breaking its own signed commitment to the UNCRPD. It is about the impact on real lives like Angela’s. It is fundamentally wrong!
DPAC is continually gathering evidence of the impacts of the cuts, their effects on independent living and quality of life for disabled people and those with long term health issues. Unlike some other organisations we are keen to bring this Government to task through every route we can, including the legal system.
The Committee invited interested persons and groups to submit evidence on this issue and written submissions was to be given in by Friday 29th April 2011.
This response was submitted by Linda Burnip
Without the right support to live independently in the community disabled people will continue to be excluded from society.
The proposed cuts by the coalition will result in further erosion of disabled people’s human rights to be able to live independently.
The Independent Living Strategy is meaningless when continent disabled people have basic support to go to the toilet withdrawn and are instead given packs of incontinence pads and waterproof sheets. (Kensington and Chelsea council). This is degrading and dehumanising but is justified as a money saving exercise.
Large numbers of disabled people are living in fear of their care packages being re-assessed. We believe that in a civilised society people should not have to live in fear just because they are, or become, disabled
We have been informed by a social worker that disabled people are no longer considered to need access to bathing facilities and that being able to strip wash is now considered adequate. (Birmingham City council)
Further cuts which local government are making to their budgets has resulted in many local authorities tightening their eligibility criteria for social care already leaving an ever increasing number of disabled people isolated in their own homes without the level of support they need to be included in society.
There must be a full commitment to uphold and fund our human rights including provision of fully accessible and affordable housing, inclusive design, new building of social housing, and enough resources to provide adaptations and aids where they are needed.
Disabled people’s access to equality and human rights cannot be held ransom to funding issues alone and there must be a financial commitment made and kept to meet disabled peoples’ human rights under UNCRPD.
Loss of the mobility component of DLA will deny many care home residents of a right to family life as they will no longer be able to afford to travel to see relatives.
Disabled people and user led organisations must be consulted about policy decisions.
The cuts proposed by the coalition government mean the UK will utterly fail to meet the convention rights guaranteed in Article 19 of the UNCRPD.
Disabled People Against Cuts is a pan-impairment user-led disabled people’s campaigning group set up to campaign against the many cuts to benefits and care funding which are now facing disabled people.
We have well over 2,000 supporters and many of their views and experiences, in particular living in fear, are reflected in our submission to the committee. Our recent virtual on-line campaign to coincide with the TUC march on March 26th had more than 250, 000 views over the week of and weekend of the march.
Recommendations we would like to see in the committee’s report
We would welcome the committee recommending that disabled people’s human rights must be upheld by any changes to legislation, and that any legislation that fails to encompass these rights is unlawful.
We would hope that the committee will recommend that the Independent Living Fund will not be abolished in 2015 and that it is reopened to new applicants forthwith, together with an adequate level of funding being made available to support disabled people to live independently.
We would further like to see the committee recommending that local authority social care budgets must be ring-fenced as we feel this is also essential. There should also be no increases in charges for care funding.
A programme of urgently building more, accessible and affordable social housing is a further necessity to enable independent living. This must be accompanied by the reversal of proposed changes to Housing Benefit and Local Housing Allowance until such time as there is an adequate supply of suitable social housing available for disabled people.
Should the right to independent living continue to form the basis for Government policy on disability in the UK?
What do we mean by IL?
Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation.
Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and interests, and start families of our own.
Without the right to live independently in the community like non-disabled people disabled people will continue to be excluded from society, to face gross inequalities and to have their human rights under article 19 of the UNCRPD denied. UNCRPD upholds the principle that disabled people including disabled women and children must be able to exercise human rights on an equal basis to non-disabled people. As the UK has ratified the convention both current and new UK legislation should uphold disabled people’s convention rights. However at the moment disabled people are having their human rights stripped away from them one after another.
The proposed cuts by the coalition will result in further erosion of disabled people’s human rights and rights to live independently. This includes in many cases a drastic reduction in income, negative reforms of the current systems of welfare to cuts to social housing, adaptations, housing benefits, and loss public sector jobs. All of these changes will negatively affect disabled people including disabled children and their families disproportionately.
Do existing policy statements, including the Independent Living Strategy, represent a coherent policy towards the implementation of the obligations in Article 19 of the UN Disability Rights Convention? Could current policy be improved? If so, how?
While the existing policy statements sound coherent as they stand the reality of what is happening in practice is very different and far from what is intended in the substance. In no way are the stated policy objectives being met.
The Independent Living Strategy is meaningless when support for disabled people for personal care as basic as going to the toilet is withdrawn and replaced by packs of incontinence pads and waterproof sheets when the service user in not incontinent (Kensington and Chelsea council). This is degrading and dehumanising but has been justified as a money saving exercise.
In many cases personalisation has not meant an improvement in choice and control over their lives for disabled people but rather a rationalisation of services and a reduction in care funding allocated and/or a huge increase in charges which disabled people have to pay towards the care provided. (Warwickshire and Dudley councils). We have been informed by a social worker that disabled people are no longer considered to need access to bathing facilities and that being able to strip wash is now considered adequate. (Birmingham City council)
Further cuts which local government are making to their budgets has resulted in many local authorities tightening their eligibility criteria for social care which leaves an ever increasing number of disabled people isolated in their own homes without the level of support they need to be included in society.
There is no point therefore in central government putting forward independent living strategies which are meaningless without the necessary financial commitment to implement them at a local level. There must be a full commitment to uphold and fund our human rights including provision of fully accessible and affordable housing, inclusive design, new building of social housing, and enough resources to provide adaptations and aids where they are needed.
There must be as a minimum an adequate level of community support resources to support disabled people not only to live in the community securely and in adequate comfort, but to be fully included in society. At the moment all the legislative changes proposed and cuts to services are resulting in moving further away rather than moving closer to this.
The plans to close the Independent Living Fund from 2015 to save money and not provide anything to replace it with are totally unsatisfactory. Disabled people’s access to equality and human rights cannot be dependent on funding issues alone and there must be a financial commitment made and kept to meet disabled people’s human rights under UNCRPD. Cuts to legal aid funding which will restrict disabled people’s ability to challenge any cuts and human rights abuses further mean that for disabled people to be assured of their convention rights there must be a system of monitoring and sanctions for those who do not adhere to these principles.
What steps, if any, should the coalition Government, the Scottish Government or other public agencies take better to meet the obligations in Article 19 and to secure the right to independent living for all disabled people in the UK?
There is little point in ministers saying they wish to support those in greatest need when their actions prove these words meaningless. Disabled people and the disabled people’s movement have been fighting the same battles for over 30 years, yet rather than independent living being a closer reality it is now being threatened with extinction. There is no commitment on the part of the current government to support or fund this. If the right to independent living is lost then disabled people’s right to equality and human rights will be set back 30 years.
When similar changes were made to independent living funding in Norway the changes led to a large increase in the numbers of disabled people admitted to hospital for a long time and massive increases in costs to the state. Part of the Independent Living Strategy is to provide preventative services to disabled people to prevent this but in reality these too do not exist.
Article 19 stresses that people should be able to choose where and with whom they live with the support necessary to meet their needs. However much of the proposed legislation is severely eroding this. In particular disabled peoples’ human rights under Article 19 are being seriously undermined through caps on housing benefit in social housing, removal of the security of tenure from social housing, increases in social housing rents, planned removal of housing benefit payment for all rooms in a property from 2013 so that the full rent disabled tenants pay for social housing properties will no longer be covered. This is already the case for those living in the private rented sector.
Changes to Local Housing Allowance for those unable to get social housing and who rent in the private rented sector will further prevent convention rights under Article 19 being met. These changes include limiting the amount of LHA available to the 30th percentile rate will make it much more difficult, if not impossible, for someone who has additional housing needs such as a requirement for a larger property to turn a wheelchair in, or a person who needs extra space for equipment to find anywhere suitable to rent at a price they can afford. Disabled children still have no right to funding for an extra, separate bedroom to meet their needs regardless of the severity of their impairment.
Supported housing schemes are also under threat of being lost due to lack of funding.
The other important aspect of independent living however is the provision of the right level of support which is now in severe danger of ceasing to exist in many cases.
If you consider changes to policies, practices or legislation in the UK are necessary, please explain.
From what has already been said previously I think there is an urgent need for changes to policies, practices, and legislation. Eligibility criteria and access to care funding should be the standardised and provided adequately in all local authorities. Whether or not disabled people can access the homes and care and support funding they need to live independently should not be a postcode lottery.
Impact of funding on the right to independent living
The Committee would particularly welcome evidence on these recent developments:
The decision, announced in the CSR, to remove the mobility component of Disability Living Allowance for all people living in residential care
Changes to the Independent Living Fund
The removal of the mobility component of Disability Living Allowance announced in the CSR will impact negatively on the quality of life for those living in residential homes. Those people who currently receive only about £22 a week to meet all non-mobility needs will lose the major part of their income affecting their capacity to purchase mobility aids, and pay for transport to be any part of the community at all. In numerous cases losing the mobility component of DLA will deny such residents a right to family life as they will no longer be able to afford to travel to see relatives.
If mobility allowance is removed from those who are spending their mobility component on mobility aids such as a wheelchair or scooter do we assume these items will be taken away from them when they lose entitlement to mobility allowance. We do not feel the full consequences of this proposed policy change has been properly or sensibly thought through.
The closure of the Independent Living fund is one of the most obvious and vicious attacks by the government in undermining the principles of independent living. While it has been agreed that 23,000 ‘severely disabled’ people will stay on the scheme until 2015 there are no plans after that date for this funding to be replaced in any other way.
We have yet to see how the planned abolition of DLA including the higher rate – a marker for continued entitlement to ILF will affect existing claimants. Further, Adult Social Care in many areas have raised eligibility thresholds while increasing charges, leading to cases already where disabled people although pre-existing ILF claimants now fail to reach the qualifying threshold and therefore have lost their entitlement too.( Nottingham City council, Buckinghamshire council)
Young disabled people are already being denied the opportunity to go to university due to the closure of Independent Living Fund to new applicants and lack of alternative support funding from social services. This will obviously have a very negative effect on their life chances overall.
“the Big Society”Restrictions on local authority funding, social care budgets and benefits reassessments
Many local authorities have raised their charges for care, and some disabled people are now paying for their care( up to £50 per week) for the first time ever. Social workers are saying that disabled people will be lucky if they reach the qualifying criteria. Benefit reassessments are causing the most severe emotional and financial destruction.
The threat of the loss of care funding which would lead to an inability to continue to live independently means that large numbers of disabled people are living in fear of their care packages being re-assessed. We believe that in a civilised society people should not have to live in fear just because they are, or become, disabled.
Increased focus on localisation and its potential impact on care provision, and specifically, on portability of care and mobility for disabled people
Care provision should be the same regardless of where someone lives and in order to be treated on equal terms to non-disabled people it is essential that disabled people should be able to move and take their care package with them.
What impact does funding have on the ability of the UK to secure the right to independent living protected by Article 19 of the UN Disability Rights Convention?
The cuts proposed by the coalition government mean that the UK will utterly and totally fail to meet the convention rights guaranteed in Article 19 of the UNCRPD.
How will recent policy and budgetary decisions impact on the ability of the UK to meet its obligation under Article 19 to protect the right of all persons to independent living?
There will be no right to independent living at all.
Participation and consultation
What steps should the Government take to meet its obligations under the Disability Rights Convention to involve disabled people in policy development and decision-making, including in budget decisions such as the Comprehensive Spending Review?
Governments should include all user led disability organisations. While the current practice is to engage with charities they put forward views FOR disabled people not the views OF disabled people, and only user led organisations and disabled people can do this. In particular the National Centre for Independent Living is a long standing user-led organisation which sees the impacts of the cuts and proposed cuts.
Meetings across the country would also be useful so that the views of a sample of local CILs can be included and they can also be involved with meeting ministers. Responses to written consultations seem to be being ignored and it is not clear how much or how often points raised within them are taken on board.
A government with a commitment to disabled people should accept that disabled peoples’ views represent the expert views on living in a disabling society.
Are the current arrangements for involvement of disabled people in policy development and decision-making working?
No the proposed cuts shows this is not the case. The governments’ misinformation eg. that DLA was a benefit that prevents disabled people from working was a major error repeated by the media. Whether the government still incorrectly believe this is unclear, however it shows they have a serious lack of understanding about disability and disability issues.
There is growing concern that paper consultations are worthless, eg. the implementation of the Universal Credit was announced on the morning that the consultation on this closed. This gives the impression that responding to government consultations is pointless and what is said will be ignored anyhow.
Disabled people resent token consultations and want on-going involvement, to be listened to seriously and to be accepted as the experts on disability, disabling barriers and disabling policies.
One clear example is the Work Capability Assessment (WCA) for entitlement to ESA carried out at an additional massive cost to the tax payer by ATOS. Despite the fact that with representation 70% of those refused ESA win at appeal, despite the Harrington report, complaints by DPOs and CABs we are still hearing stories of individuals being declared ‘fit for work’ and placed into the work ready group when they have terminal illness, months to live, severe mental health conditions, and/or need 24 hour support. Nobody is asking the relatives of those who have committed suicide through the loss of benefits, nor those who threaten to why they feel they need to take this action.
Monitoring the effective implementation of the Convention
What steps should Government take to ensure that disabled people’s views are taken into account when drafting their reports to the UN under the UNCRPD?
There are already a range of groups involved in this for England: UKDPC, EHRC, and Disability Rights Watch. Local user-led organisations run and controlled by disabled people should also be encouraged to provide input into this through shadow reports detailing real life examples. Local groups should also be given the support and funding to establish a base-line measurement of where their area is in satisfying the key articles of the convention.
This would be of use in the intervening years until the next monitoring report is due in helping to of identify the impact of the cuts, the impact on independent living, and measurement of those things that may have improved. (although with current policies and practices this latter is unlikely to happen).
Most importantly ministers and others involved in making policy decisions should consult more widely with disabled people themselves. In particular the voices of those who are most disenfranchised and rarely are able to attend public consultations should be listened to. Those individuals who are least likely to get involved in reporting any failures to meet their convention rights should be actively sought out and their views noted and acted upon.
Often what such people experience is outside of the experience of those groups of disabled people such as Equality 2025 who do advise the government at present. Members of Equality 2025 are disabled people who have managed to negotiate the many barriers disabled people face relatively successfully but they often do not represent the views of those who have not.
As part of the national monitoring mechanism, what steps should the EHRC, NIHRC and SHRC take to ensure that the Convention is implemented effectively?
The EHRC, NIHRC, and SHRC should be a completely independent body not responsible to government in any way. It should have much stronger powers to enforce the convention. EHRC is currently viewed as weak in using its enforcement and other powers and this could be further undermined if the proposed cuts to staffing levels goes ahead. Sanctions for breaking the convention should be imposed at both national and local levels.