Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking As three of the Independent Living Fund users who have challenged the legality of the government's decision to close the Fund, we welcome the Appeal Court's unanimous ruling that this decision should be quashed. Given the Government has decided not to appeal to the Supreme Court, the new Disabled People's Minister Mike Penning will now have to reconsider the Government's approach to the future of the Independent Living Fund and its users. Rather than being the 'privileged group' referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education. They concluded that when Disabled People's Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities. For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community. Twenty years ago, Disabled People's Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): "It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome." This is as true today as it was then. In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: "If it is necessary for extra help to be provided....it will be open to the social worker who assesses the needs of disabled people to say, 'We can provide services up to this level but we believe that a further level of care is necessary,' and then to turn to the Independent Living Fund." The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history. The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes. Although the Appeal Court ruled the consultation which preceded Esther McVey's closure decision was lawful, we believe there is now an opportunity to reflect on our society's responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress. Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People's Minister Esther McVey. An opportunity for an open, democratic debate was lost. By responding to the World Health Organisation's recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people's individually assessed needs, the fear many disabled people have expressed about their future will not disappear. This fear stems from an understanding of the impact limited support in the community will have on people's life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis. Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist. There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as 'challenging' rather than being approached with patience, compassion and kindness. The fear of residential care that exists among Independent Living Fund users with 'round-the-clock' needs also exists among large layers of the general public. When reconsidering the Government's approach to the future of the Independent Living Fund, the new Disabled People's Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need. His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care. We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years. We would like to express our sincerest thanks to: our fellow claimants Paris L'amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield's networking and guidance during the case. We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for. We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service. The future is ours to shape, but only if the personal assistance we need is present.
The Government has just appointed a full Minister of State, Mike Penning MP, for Disabled People: this is welcome. The Government has also now published its response to the Personal Independence Payment (PIP) and mobility consultation.
The Government previously announced it would cut eligibility for ‘high rate mobility’ support from people able to walk 50 metres to just 20 metres. The Department for Work and Pensions (DWP) announced the policy late in welfare reform plans but were forced to undertake a consultation after disabled people and organisations challenged the announcement, highlighting the devastating impact this policy would have – denying essential help to thousands of disabled people and carers helping with mobility/transport needs.
The Government decided – against the wealth of evidence provided by individual disabled people and disability organisations across the UK – to press ahead and axe help for people unable to travel 21 metres unaided. Read the full DWP Consultation Response (PDF)
The DBC (a 50-organisation consortium of disability, advice and other organisations) has said the Government proposal will trap disabled people at home – denying work, education and other opportunities and the ability to be independent. Read the full DBC Response online
Claire Nurden, Co-Chair of the DBC said:
“We are extremely disappointed that the government has ignored grave concerns about the 20 metre rule… PIP is supposed to help those most in need but it is exactly these people that are now set to lose. We have been overwhelmed by the response we’ve had from disabled people who are terrified about what this rule will mean. Many will be at risk of losing jobs…Others will not be able to get to medical appointments, or will have to leave education.”
Disability activist Sue Marsh says:
“When the coalition government announced plans to scrap the Disability Living Allowance, and replace it with Personal Independence Payments they met with unprecedented opposition from sickness and disability campaigners and charities alike. Almost unanimously we told the government it was the wrong thing to do. But even when we won changes to the draft bill in the Lords, the government simply used an archaic parliamentary law to overturn all of our work. Sue Marsh – I support the Spartacus Report
Then, as if the original plans weren’t bad enough, without consulting anyone at all, they announced that they would also be slashing the qualifying threshold for mobility assessment from 50 metres to 20 metres. We are Spartacus – PIP
Again, campaigners and charities alike complained, again they won. We took the government to court and they had to back out and say they would run a consultation after all.
This new consultation had over 1100 responses – mainly from sick and disabled people or the DPOs and Charities that work for them. Of those 1100 responses, just 5 – yes 5 supported dropping the qualifying threshold from 50 metres to 20 metres. That’s a 60% reduction!!! Just imagine for a moment if the government announced they were going to raise the qualifying age for state pensions to 104!! That’s a 60% increase too and I imagine they’d be out of power by lunchtime. Jane Young – The PIP 20 Metre Rule Remains Intact
But most shockingly of all, the government clearly states that those responding to the consultation do not support the change. They clearly state that it will push costs elsewhere and reduce the capacity of sick and disabled people to get to their jobs. Yet they have decided to go ahead anyway.
Yet again, when it comes to sickness and disability issues, this government have decided to ignore all of the evidence, ignore all of the experts and ignore all of those affected. As a result, 428,000 people with serious disabilities or long term conditions will lose the support they rely.
Letter by Malcolm Mort, member of RNIB and Hardest Hit.
written for the Hardest Hit
The government has recently opened a consultation on the ‘moving around’ activity for Personal Independence Payments. The key issue is whether the cut-off for Enhanced Rate Mobility (equivalent to Higher Rate in DLA) should be at 20 metres, 50 metres or some other distance.
The We Are Spartacus team have produced an excellent briefing which you can read to find out more information about the consultation (a short summary is also provided below).
If you make a response to the consultation, please also send a copy to email@example.com if you are happy to do so, as the Spartacus team would like to carry out an independent review of the responses. You can also complete their survey; this will be very helpful in informing the response that the Spartacus team make. Please do respond to the government and complete the survey. It is important that the government realise how big an issue this is. Consultation responses have to be submitted by the end of Monday 5th August.
Previously, people unable to walk 50m received the higher rate mobility of Disability Living Allowance. Under Personal Independence Payments, these people will receive only the standard rate, leaving them ineligible for the Motability scheme. This is a retrogressive step.
The government says that those who can walk 20-50m have “some, albeit limited, mobility.” Under DLA, this distance was considered “virtually unable to walk.” This was established by case law. The government’s regulations therefore run contrary to case law.
Government guidelines in the report “Inclusive Mobility” include:
- In off-street car parks operated by a Local Authority and in car parks offered for public use by private companies, spaces for Blue Badge holders should be provided as close as possible, preferably within 50 metres of the facilities served by the car park.
- Seats and perches should be placed or regular intervals along paths in the countryside. They should be located no more than 100 metres apart.
- In commonly used pedestrian areas, and transport interchanges and stations, seats should be provided at intervals of no more 50 metres.
This means that people able to walk 50-100m are, in these guidelines, considered as disabled. People unable to walk 50metres may still struggle to access public places. This is because disabled parking bays may still be too far from the facility they serve, and because benches may be placed too far apart (e.g. if a person can walk 35m, but benches are 50m apart and/or the parking bay is 50 from the facility). People unable to walk 100m may struggle to access paths in the countryside. Under PIP, these people will not be considered disabled unless they also have difficulties with planning and following journeys. This is inconsistent with current provision for disabled people.
Action for ME said, “Mobility underpins every aspect of life, and if you can only move up to 50 m (regardless of whether that is unaided or with a stick) then you are unable to engage in society or manage daily activities without considerable help and alterations to daily life, all of which incur extra costs which will not be met by the standard mobility component.”
The British Disability Equality Forum said, “there is an assumption that all Disabled people with mobility impairments will have the use of a car … This assumption means that, for example, someone who “Can move up to 50 metres unaided but no further,” will score 8pts because “50 metres is considered to be the distance that an individual is required to be able to walk in order to achieve a basic level of independence such as the ability to get from a car park to the supermarket.” Yet 8pts will not pay for the Motability car that they would need to be walking from, to meet this assumption.” And “the 200m distance set, whilst it might ensure someone can walk around a supermarket, does not allow for them getting to and from the said shop. In the case of larger town centres car park can be significantly more than 200m from the relevant shops – especially fresh food shops; in most areas of the country most people don’t live within 200m of a bus stop and in rural areas the bus stops are likely to be substantially further away from an individual’s home. The Forum therefore wants to see some more consideration of the ‘gaps’ remaining for people to fall through.”
Disability Wales said, “Considering that people who can mobilise no further than 100 metres are awarded only 4 points, which could exclude them from any mobility payment, the scores are quite clearly much too low. People who can mobilize 100 metres without using a wheelchair, but who experience conditions such as fatigue, pain or breathlessness, may incur substantial extra costs. The scoring should reflect this.”
These are just three examples of responses to the second draft of the assessment criteria. A number of organisations recommended 100m as the threshold for enhanced-rate mobility. Many pointed out the numerous difficulties faced by those with limited mobility, including the fact that the real environment is rarely flat.
The overall impression from the responses is that the enhanced rate threshold should be at least 50m and preferably 100m. The small sum of money awarded to those unable to walk 50m coupled with their exclusion from the Motability scheme means that people with severe mobility restrictions will not be getting the support that they need to achieve a reasonable level of independence and access to society.
You can find more information on PIP and the 20m ruling from ‘Where’s the Benefit’ here.
The consultation document is available here.
The Department of Work and Pensions have today announced that they will hold a “further consultation on the mobility component of Personal Independence Payment (PIP)”.
This follows the outcry after the threshold to be eligible for the most help with moving around was tightened from fifty metres to twenty metres with no indication during the consultation that this would be the case. Myself and two others had initiated a Judicial Review against the DWP to declare the consultation invalid and force a rethink. The Judicial Review would have taken place at the end of July.
The DWP would very much like you to believe that it is holding this new consultation because it is a kind and listening department and their announcement does not mention the court proceedings at all.
“However, the department has received significant feedback from disabled people and their organisations that they want a further opportunity to comment on the finalised assessment criteria rules around the mobility component. That is why it is now giving notice of a further consultation to be launched late June.”
However the emails sent out to my solicitor and to members of the stakeholder consultation forum had a subject line of “Re: Judicial Review” so make of that what you will.
While this new consultation is very good news it is not an admission that the twenty metre eligibility is wrong or an indication that the DWP will change their minds. We will have six weeks to make sure that the DWP has no choice but to admit that the twenty metre limit will cause serious harm to a great deal of people, withdrawing support from people that desperately need it. I will publish details of how to contribute to the consultation once they are available.
I will be discussing with my solicitor and other people involved what step to take next.