Over 30 charity chief executives call on Minister to rethink damaging PIP changes

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Today (15th March) the Chief Executives of over 30 charities and organisations have written an open letter to Minister for Disabled People, Health and Work Penny Mordaunt, urging her not to proceed with damaging changes to Personal Independence Payments.

Imminent controversial changes to the eligibility criteria for PIP will leave at least 160,000 disabled people and those with long-term conditions without access to this vital financial support.

Research from the charity Scope shows that disabled people spend an average of £550 a month on disability related expenditure, including increased energy bills, specialist equipment and insurance. PIP helps to cover these essential and unavoidable extra costs faced by disabled people.

The letter makes clear those with mental health issues, learning disabilities and autism face just as severe barriers and costs as those with other conditions – which recent changes by the Minister fundamentally failed to acknowledge.

Signed by 30 members of the Disability Benefits Consortium (DBC) including Parkinson’s UK, The MS Society and Mind, the letter highlights that “the decision to amend PIP following Upper Tribunal judgements means that disabled people face losing £3.7 billion by 2022…this undermines the principle of the PIP assessment and its ability to fairly provide financial support, regardless of condition.”

The letter continues, “we are also worried that the full scale and impact of these changes will not be understood before they come into effect. The Impact Analysis acknowledges a ‘significant risk that the numbers affected could be much higher’ than currently estimated.”

Phil Reynolds, co-chair of The Disability benefits Consortium and Policy and Campaigns Adviser at Parkinson’s UK said;

“Across the DBC we have had our helpline and advice services inundated by calls about PIP since it was introduced.  Instead of supporting disabled people, the benefits system seems increasingly rigged against them.  The whole system needs urgent improvement, in order to accurately assess the support they need. Disabled people cannot afford to wait.”

Letter to Minister for Disabled People, Health and Work

Dear Minister,

Changes to Personal Independence Payment

We, the undersigned, as national organisations representing disabled people, are deeply concerned by imminent changes to Personal Independence Payment (PIP) which will leave at least 160,000 disabled people and those with long-term conditions without vital financial support.

The decision to amend PIP following Upper Tribunal judgments means that disabled people face losing £3.7 billion by 2022. We believe this undermines the principle of the PIP assessment and its ability to fairly provide financial support, regardless of impairment or condition.

PIP helps to cover essential and unavoidable extra costs faced by disabled people. Research by Scope shows that disabled people spend an average of £550 a month on disability related expenditure, including increased energy bills, specialist equipment and insurance. Those with mental health issues, learning disabilities and autism face just as severe barriers and costs as those with other impairments – these changes fail to acknowledge this.

We are also worried that the full scale and impact of these changes will not be understood before they come into effect. The Impact Analysis acknowledges a ‘significant risk that the numbers affected could be much higher’ than currently estimated.

Our helpline and advice services have been inundated by calls about PIP since it was introduced. In far too many cases we hear that the system is continuing to fail people. The confusion and concern caused by these changes highlights the need for the system to be urgently improved. It must work for disabled people and accurately assess the support they need.

We would welcome the opportunity to discuss this issue with you further.

Yours sincerely:
1. Steve Ford, Chief Executive, Parkinson’s UK
2. Liz Carroll, Chief Executive, The Haemophilia Society
3. Teresa Catto-Smith, Chief Executive, Autism in Scotland
4. Sonya Chowdhury, Chief Executive, Action for M.E
5. Ailsa Bosworth MBE, Chief Executive, National Rheumatoid Arthritis Society
6. Philip Lee, Chief Executive, Epilepsy Action
7. Chris Mackie, Director, AdvoCard
8. Jan Tregelles, Chief Executive, Royal Mencap Society
9. Karen Walker, Chief Executive, Multiple System Atrophy Trust
10. Billy Watson, Chief Executive, SAMH (Scottish Association for Mental Health)
11. Mark Lever, Chief Executive, National Autistic Society
12. Alison Garnham, Chief Executive, Child Poverty Action Group (CPAG)
13. Brian Carlin, Chief Executive, Aspire
14. David Ramsden, Chief Executive, Cystic Fibrosis Trust
15. Debbie Cook, Chief Executive, National Ankylosing Spondylitis Society (NASS)
16. Amanda Batten, Chief Executive, Contact a Family
17. Paul Farmer, Chief Executive, Mind
18. Deborah Gold, Chief Executive, National AIDS Trust
19. Steve Scown, Chief Executive, Dimensions
20. Kate Lee, Chief Executive, CLIC Sargent
21. Gillian Morbey, Chief Executive, Sense
22. Jill Allen-King, National Federation of the Blind of the UK
23. Dave Webber, Chief Executive, Livability
24. Mark Atkinson, Chief Executive, Scope
25. Barbara Gelb OBE, Chief Executive, Together for Short Lives
26. Peter Corbett, Chief Executive, Thomas Pocklington Trust
27. Mark Winstanley, Chief Executive, Rethink Mental Illness
28. Neil Heslop, Chief Executive, Leonard Cheshire Disability
29. Liz Sayce OBE, Chief Executive, Disability Rights UK
30. Michelle Mitchell OBE, Chief Executive, MS Society
31. Kate Steele, Chief Executive, Shine
32. Andy Kerr, Chief Executive, Sense Scotland

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Failing benefits system leads to ill-health and isolation for disabled people

A benefit designed to support disabled people is making their health worse and leaving them isolated, according to new research from over 80 organisations.

In a survey of over 1700 people with long-term conditions including Parkinson’s, multiple sclerosis, epilepsy and mental health problems, more than three quarters (79%) of respondents said their assessment for Personal Independence Payment (PIP) had made their health worse due to stress and anxiety.

Read the full report here

Read the executive summary here

It is the first time that PIP, which is designed to help people with extra costs caused by long term ill-health or disability and replaces Disability Living Allowance (DLA), has been evaluated in this way.

The organisations that make up the Disability Benefits Consortium (DBC) warn that although PIP is a lifeline for disabled people when they can access it, the findings provide clear evidence that in too many cases, the assessment process is failing people at every turn and having a devastating impact on their health.

As part of their report Supporting Those Who Need It Most? launched today, the DBC surveyed more than 1,700 people and found that applicants are facing unnecessary barriers to accessing the support they need, including:

  • Almost three quarters (71%) of respondents found the PIP application form ‘hard’ or ‘very hard’ and 11% of respondents were unable to complete it at all
  • Over half (58%) of people said that assessors did not understand their condition
  • Two thirds (64%) of people who saw their claim form felt it ‘badly reflected’ the answers they had given in their face-to-face assessment

As a result of this flawed assessment process, people are losing out on vital support with half (50%) of respondents saying they were receiving less money under PIP than they were previously entitled to under DLA, or they had lost their award completely.

The report warns of the devastating consequences this is having, including people:

  • becoming more isolated (40%)
  • struggling to pay for food, rent and bills (35%)
  • not able to get to medical appointments (26%)

The report also shows that the number of decisions being overturned at appeal is increasing. In 2013/14, 26 per cent of decisions were changed in favour of the applicant. In the fourth quarter of 2016/17 this had increased to 64 per cent.

The DBC say this suggests the assessment process is failing to make accurate decisions first time around, leading to further stress for the applicant. In addition, it is estimated people face a 17-week wait for their appeal without access to the financial support they desperately need.

Diane Barrett from Battersea, South London was diagnosed with Parkinson’s in 2008. She was receiving the highest rate of Disability Living Allowance for seven years but after her  reassessment for PIP she was told her needs had changed and she lost the £57 a week she was receiving to pay for a mobility car. She had to take her case to a tribunal to get the decision over-turned.

Diane explains: “I was absolutely gobsmacked when the letter came. To be told I had improved when I’m living with a condition that is only going to get worse was horrible.

“Without the allowance I couldn’t have a car which had a massive impact, it totally took my independence and my lifeline away. I find it hard to use buses and have fallen a couple of times when I’ve tried so it was quite scary.

“It also made me realise how bad my Parkinson’s was, going through the process was a constant reminder of my diagnosis. I can normally stay positive but the stress made me worry about the future and I became depressed. This led to lack of sleep and that caused my tremor and stiffness to get worse. I felt very isolated.

“I ended up going to a tribunal and it took just ten minutes for the judge to overturn the decision.

“As soon as it happened, my son and I looked at each-other and cried with relief. I felt that finally someone was listening to me and believing me about how my condition affects me. It had been so stressful and confusing from start to finish, I was glad it was over.

“I wish the government would think more about long-term conditions. People with conditions like Parkinson’s and MS are not going to get better, the system just does not take that into account.”

The DBC is now calling on the government to urgently review PIP and make much-needed improvements including simplified application forms, improved knowledge for assessors and indefinite awards for people with progressive conditions, removing the need for people to constantly be reassessed.

Phil Reynolds, Co-chair of the Disability Benefits Consortium and Senior Policy Adviser at Parkinson’s UK, said:

“For the first time, these findings paint the true picture of what it is like to go through the complex assessment process for PIP.

“Shockingly, a small number of people told us the experience of claiming PIP was so distressing that it has caused new conditions to emerge, or even caused suicidal thoughts.

“It is clear that PIP is failing many people from start to finish so it is vital the government work with us to get a grip on PIP and support everyone who needs it, instead of making their health worse.”

ENDS

Media Enquiries

For more information please contact:

Amy Dodge, Media and PR Manager, Parkinson’s UK, 020 7932 1362

adodge@parkinsons.org.uk

Out of hours: 07961 460248

DBC responds to Budget 2017

Commenting on the 2017 Spring Budget, Disability Benefits Consortium Policy Group Co-Chair Phil Reynolds said:

Today was a missed opportunity to put a stop to damaging cuts to Employment and Support Allowance (ESA), Personal Independence Payment (PIP) and reassure disabled people and those with long-term conditions that they will receive a fair deal if they need additional support in future.

Alongside MPs from all parties, we have warned that the disastrous £1500 per year cut to ESA for new claimants in the Work Related Activity Group and the equivalent benefit in Universal Credit will push them further from work and closer to, or deeper into, poverty.

Proposed changes to Personal Independence Payment (PIP) will leave at least 150,000 disabled people without vital financial support in future. We’re extremely concerned that these unnecessary regulations undermine the principle of the PIP assessment.

Thousands of disabled people will be bitterly disappointed that the Government has not used today’s Budget to scrap these damaging and unnecessary cuts.’

 

DBC response to Government announcement on changes to PIP regulations

Commenting on the Ministerial announcement made on 23rd February, Rob Holland Public Affairs Manager at Mencap and DBC Parliamentary Co-Chair said

‘We are concerned by these changes to the criteria for Personal Independence Payment (PIP). These risk further restricting access to vital support for thousands of disabled people. Last year, MPs strongly opposed restrictions to PIP and the Government promised no further cuts to disability benefits. Other changes have already had a devastating impact on thousands and in far too many cases people have had to rely on tribunals to access the support they need.

We are deeply disappointed as a coalition of over 80 organisations representing disabled people that we were not consulted about these proposals and their potential impact. The Government must ensure the views of disabled people are properly considered before they proceed with these changes.’

Tell us about your experience of claiming disability benefits

The Disability Benefits Consortium of over 80 charities and organisations has launched its 2017 Big Benefits Survey, which aims to better understand disabled people’s experience of applying for and claiming disability benefits.

Take the Big Benefits Survey here 

We know that disabled people often struggle to get the financial support they need. We want to hear from as many disabled people as possible so we can understand what is and isn’t working well.

The survey asks about claimants’ experiences of the benefits system, particularly Employment and Support Allowance and Personal Independence Payment. Responses will be kept anonymous, unless respondees offer to be contacted further.

The anonymous evidence provided will help us to campaign for a fairer benefits system for all disabled people. Anyone who has supported individuals to apply for these benefits is welcome to fill it in of their behalf.

Chancellor fails to address disabled people’s concerns on benefit cuts

23rd November 2016

The DBC is disappointed that the Chancellor has failed to use the Autumn Statement today as an opportunity to act on cross party opposition and widespread concerns from disabled people and charities to halt damaging cuts to support for disabled people.

The Government is continuing with a cut to the Work Related Activity Group (WRAG) of Employment and Support Allowance (ESA) and the Universal Credit (UC) equivalent.

From April 2017, new claimants will face a loss of almost £30 a week. Cuts to the ‘work allowance’ – the amount of money disabled people on UC can keep before they lose benefits, are also going ahead. These changes will push disabled people further from the work place and closer to or deeper into poverty.

In addition nothing has been said on the proposals to ask local authorities to fund the support currently provided by Attendance Allowance (AA) from their business rates for future claimants. This is very worrying as it is likely to lead to reductions in the amount of support people who receive AA get.

While the Chancellor has lowered the ‘taper’ rate within UC for those in work from 65% to 63%, (meaning people in work will keep an additional 2 pence for every pound over the work allowance they earn) this will come as scant consolation for the thousands of disabled people who will be much worse off

MPs vote to postpone cuts to Employment and Support Allowance and Universal Credit

17th November 2016

We are delighted to see that MPs from across all political parties have listened to concerns of disabled people and charities and voted to postpone the £30 weekly cuts to Employment and Support Allowance (ESA) and Universal Credit in today’s backbench business debate in the Commons.

The vote to postpone the cuts was won 127 votes to 0 and, while not binding on the Government, the strength of feeling to reverse these cuts in the Autumn Statement is overwhelming.

For over a year the Disability Benefits Consortium together with MPs from across all partieshave been warning of the disastrous effects that a cut to ESA for new claimants in the Work Related Activity Group and the equivalent benefit in Universal Credit (due to come in April next year) would have on the lives of disabled people. We firmly believe it would push them further from work and closer to, or deeper into, poverty. We hope the Government listens to these calls and acts swiftly to allay worries among disabled people.