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Conference Report - 2012

Opening speech
Department for Work and Pensions (DWP) panel
Questions put to the DWP panel
Challenging unlawful cuts
Where next for disability rights?
Closing comments


Social care
Work capability assessment

Opening speech

Liz Sayce began the conference by highlighting the progress made within the disability movement over the past ten years but also mentioned the challenges that lay ahead.

You can view a powerpoint presentation or word version of Liz Sayce's opening speech.

Department for Work and Pensions (DWP) panel

DWP panel members

The DWP panel session gave conference attendees a chance to put questions to DWP staff concerned with the implementation of universal credit (UC) and the personal independence payment (PIP). The panel consisted of Steve Lismore, Head of Stakeholder Engagement, Mary Hipkin, PIP benefit rules and consultations, Michael Hewson, PIP assessment criteria and Richard Llewellyn-Davies, UC issues around claimants unable to claim UC digitally.

Steve Lismore gave a brief introduction, summarising the principle behind welfare reform. The task facing a slimmed down DWP is to deliver a new service, involving a rapid change in the benefit system which minimises problems for disabled people.

Richard Llewellyn-Davies gave a five minute talk on universal credit. The aim of UC is to remove the bureaucracy that stops people working. He would like Disability Rights UK to help recruit members for the support and exceptions group, which considers those who may be unable to access UC by the standard route.

Mary Hipkin is responsible for putting out information on PIP as well as consultations. There have been two PIP consultations - Personal Independence Payment: assessment thresholds consultation, which had 1000 responses and DLA reform and Personal Independence Payment – completing the detailed design which had 1600 responses. Following from these responses the DWP is examining PIP in relation to:

  • the mobility assessment
  • the sensory impairment assessment
  • bathing and the lower body assessments
  • young people's claims
  • linking rules
  • Motability eligibility
  • habitual residence
  • claiming, claim forms and leaflets

A response to these consultation responses will be issued shortly.

Questions put to the DWP panel

Q1. I've heard that under PIP representatives, relatives, friends etc. will not be allowed to accompany claimants to assessments?

A1. This is not true. Claimants will be allowed to have someone with them.

Q2. What is the aim of UC and what is it achieving/will it achieve? Is it a money saving exercise?

A2. UC is an extension of the previous Government's stance that the best route out of poverty is through work. The aim is to help people get and keep jobs. PIP is partly a money saving exercise but is also intended to better target support.

Q3. Last October I was working. I had four jobs with gaps in my employment. This affected my housing benefit which kept going up and down. What will happen under UC?

A3. Rent costs will be included in UC to end this problem. The Real Time Information system (RTI) will allow for automatic updating of earnings and benefits (if you work for a small employer or are self employed you will be able to do this online).

Q4. The object of welfare reform is seen as an attempt to cut the benefit bill yet little is done about the millions already wasted within the system. I have a 100% success rate at employment and support allowance appeals. Can money be reclaimed from ATOS because of poor decision making based on its assessments?

A4. It is recognised that appeals are a waste of time and money. Our aim is to get decisions right first time [the issue of reclamation from ATOS was not addressed]. PIP is trying to learn from the mistakes of the work capability assessment (WCA). The DWP is putting work into minimising appeals by providing a better explanations

Q5. I also have concerns about the poor standard of ATOS assessments.

A5. PIP will impose different requirements on ATOS than the WCA.

Q6. I have concerns about the inaccessibility of assessment centres. I was not allowed into the building. This sets a poor example.

A6. PIP intends to have assessments carried out in more familiar localised settings.

Q7. I have concerns about the stress that ATOS imposes on disabled people. It is an organisation that is a step away from being Nazi.

A7. The panel recognise that ATOS are not popular.

Q8. Can we have clarification of specially adapted properties and under occupancy rules in relation to the benefits cap? There is also a need to address the problems facing cities where rents are high such as London or Manchester.

A8. The budget has been increased for discretionary housing payments which can be paid in these circumstances. Following this answer it was suggested that some local authorities had already run out of funds and that eventually the discretionary housing payment would be reduced or removed. The answer to this was that the underlying aim of UC is to get people into work. Discretionary housing payments are not meant to address all need.

Q9. Much of the disagreement on welfare reform is over policy. The Minister should have attended this conference. What is the DWP doing to stimulate user-led involvement?

A9. We are keen to do engage user-led organisations and are interested in any examples of good practice. There is some funding available for capacity building. The Right to Control pilots have a strong role for user led organisations.

Q10. Regarding your answer to question 4. The approach seems to be to discourage appeals by explaining the decision. this does not address the central issue that decision making is poor.

A10. It is not the intention to discourage appeals. Professor Harrington's review found that people were more likely to appeal if the decision process was poor and the reasons given for a decision were insufficient. [The Harrington review recommends that written communications to the claimant are comprehensively reviewed so that they are clearer, less threatening, contain less jargon and fully explain the process]. We are trying to build these recommendations into the process with clearer letters etc.

Q11. I have concerns about applying online as I have sight problems.

A11. I'm not too familiar with this area but I believe that there is screen reading software [this caused protest from the floor]. UC will retain face to face contact and home visits. PIP will have telephone claims with a paper based alternative. There will be a PIP online claim service from 2014.

Q12. What about additional expenses incurred by other service providers - NHS and local authorities - as a result of people being taken off benefits?

A12.We are required to consider the burdens to other service providers such as local authorities. We hold meetings with the local government association. Many decisions related to this are not finalised.

Q13. I am concerned that the term 'disability' has a negative connotation for the DWP. I question its commitment regarding discrimination.

A13. Liz Sayce,in her opening conference speech highlighted the progress DWP has made towards disabled people's rights and the fact that there is more to be done. The DWP needs to work with disabled people to make more progress.

Q14. The aim is to cut 20 per cent off benefits. How does this impact on the assessment?

A14. This saving refers to disability living allowance. PIP will aim to target those with the greatest need.

Challenging unlawful cuts

Alex Rook, of Irwin Mitchell Solicitors

Alex Rook, of Irwin Mitchell Solicitors gave a presentation on Challenging unlawful cuts. You can view a powerpoint or word version of Alex Rook's presentation. There then followed a short question and answer session

Q1. How do we tackle unlawful policies?

A1. Bring forward more cases and publicise these policies.

Q2. This is a case of someone who had transferred funding which was stopped, meaning that personal assistants may not be paid. The local authority complaint system is too slow.

A2. Firstly this involved unlawful backdating of charges which can be challenged. Secondly you should write to the local authority stating that you are willing to use the complaints system if funding continues in the meantime. otherwise you will go to court.

Q3. Do you know of any legal challenges foe the Work Capability Assessment?

A3. Difficult. There is one challenge by Mind and the Public law Project. For more information see Tom Pollard's presentation.

Irwin Mitchell Solicitors

Where next for disability rights?

Sue Bott gave a brief overview of Disability Rights UK information provision and events. Then there was an open forum where suggestions were made from the floor. These included:

  • The need to challenge the credentials and services provided by third party work programme providers. The programmes are poor quality with no regulation and no results analysis.
  • Highlight the positive benefits of social care and independent living in contributing to the economy to all political parties in the run up to the next election.
  • Disability Rights UK does not need to get hung up on detail at this stage but should concentrate on its headline narrative as a starting point.
  • Tackle the difficulty of disabled people accessing jobs fairs using the Equality Act.
  • Identify ways in which disabled people can be motivated to get involved.

Closing comments

Phil Friend OBE, Chairman Board of Trustees

Phil Friend OBE, Chairman Board of Trustees closed the conference by saying that Disability Rights UK needs to be more in touch with grass routes issues. We can focus on the bigger picture but in the end it's the small things that affect disabled people on a day to day basis.

He also thanked Disability Rights UK for their contribution to making today's event a success.

Finally he said that disabled people need to be treated as assets, not problems. The Paralympics were an example of this. Oscar Pistorius was enabled by the fact he had £60,000 blades as well as a coaching and training support. All disabled people can achieve if they are given support.


Social Care Workshop

We ran two workshops on the future of social care. The first workshop focused on funding and the second workshop on the law reform. The workshop was led by Marije Davidson, with Simon Gillespie, Chair of the Care and Support Alliance and Clare Hensman and Amy White from Department of Health.


  • Clare Hensman, Department of Health (workshop 1) - Clare Hensman's presentation (powerpoint or word)
  • Amy White, Department of Health (workshop 2) - Amy White's presentation (powerpoint or word)
  • Simon Gillespie, Chair of Care and Support Alliance and Chief Executive of MS Society - Simon Gillespie's presentation (powerpoint or word)

Key issues arising from Q&A:

  • Politics of social care. Successive Governments have grappled with social care and none have been able to resolve the growing crisis. What are the chances that we will have real reform now? Will the Government also take account of the economic benefits of social care, including increased participation of disabled people and our contribution to employment in the care sector?

There is a political commitment to a new care and support law before the end of Parliament (in 2015). The funding issue will be addressed through the Spending Review (likely to be in 2013). The Care and Support Alliance (CSA) is a network of over 60 organisations representing older and disabled people and their families, including Disability Rights UK. The CSA is campaigning for a fair and sustainable care system. It is important for disabled people to lobby their MPs – to explain what social care is, why it matters and to put the funding issue on their agenda. For more information, go to www.careandsupportalliance.org. Disability Rights UK will provide campaign updates through our e-newsletters.

  • Choice and control. Currently disabled people have to fit their lives around support which limits their opportunities to work. Sometimes safeguarding arguments are used to reduce choice and control by the disabled people. How does the Bill address this?

The Bill places a duty on local authorities to promote an individual’s well-being including choice and control over their life and the care and support they get. The assessment must also look at outcomes for the disabled person. So people should be able to fit their support around their life including work. Also, it means that people should also be allowed to have choice with risk. The Right to Control (http://odi.dwp.gov.uk/odi-projects/right-to-control-trailblazers.php) is not specified in the legislation.

  • Postcode lottery. How will the new law and funding address the postcode lottery in terms of charging, services and good practice?

The Government believes that local authorities should be able to decide their own priorities but the White Paper aims to promote good practice, whilst the Government intends to set a minimum eligibility threshold.

  • Future for Independent Living Fund (ILF) users. What happens in 2015 when the ILF closes?

One of the options that the Department for Work and Pensions consulted on was to transfer the money from the ILF to councils (i.e. it would no longer go to ILF users). DWP will respond to the consultation in due course. Simon Gillespie warned that this funding will not be ringfenced and there are no safeguards that ILF users will continue to receive the funding they need. There is a real need for joined-up working across government to ensure that disabled people have the care and support they need to play a full and equal part in society.

  • Social care and NHS. How does the Bill address the integration between social care and NHS continuing care and will it mean that services that are currently provided free on the NHS become 'social care' and charged for?

The Bill places a duty on local authorities to cooperate and it allows authorities to work together on assessments, including sharing information (e.g. assessment for social care and continuing care). However there remains a grey area and the intention is to provide clarity between "social care" and continuing health care. The Bill includes a power to charge for social care and the details will be in regulations.

  • Eligibility framework. How will the Bill help people who are currently not receiving services because their needs have been assessed as ‘moderate’ or ‘low’?

The eligibility framework is currently in guidance; the Bill says that everybody who has eligible needs must have their needs met; and the framework will set out through regulations. There is no decision about the level of need at which a local authority must meet them. The Care and Support Alliance believes that the level must be set at moderate, together with strong preventative services.

  • Informal care. How does the Bill address informal care?

The Bill gives carers new rights, including a right to assessment and support. People should not have to provide care unless they are willing and able. We need a further discussion about what is ‘care’.

 To find out more about the developments around care and support, go to:

Transport Workshop

Declan O’Mahoney, Motability, and Mike Lambden, National Express

The workshop was led by Sue Bott, with Declan O’Mahoney, Motability, and Mike Lambden, National Express.

Sue began by reporting that, at all of nine regional events organised by Disability Rights UK, transport issues came up. Disability Rights UK want to take up these issues over the next 12 months including:

  • wheelchair precedence over pushchairs
  • signs
  • parking
  • audible announcements

Mike Lambden gave a short presentation on national express coaches services for disabled people. You can view this as a word or pdf version.

Declan O’Mahoney talked a little on the future of the Motability Scheme. Last year Motability made some changes to the scheme to discourage abuse of the system but by and large they are happy with it.

For the future they estimate that 100,000 of their existing 600,000 customers will be ineligible for Motability agreements under PIP. Motability has been consulting with various groups, the DWP and customers regarding this. In the next few days the new assessment criteria will be published.

In advance of PIP, Motability has already decided that those going into hospital who lose their enhanced mobility component after 28 days will not necessarily lose their Motability car. Decisions on this will be made according to individual circumstances.

Issues raised at the workshop included;

  • Problems with rail luggage in wheelchair areas - Railway staff often fail to do anything about this. New train designs which are supposed to conform to guidelines do not seem to improve this situation.
  • Buggies versus wheelchairs - The problem is partly one of human nature and selfishness. Wheelchair areas are also often occupied by standing passengers and luggage. Often the driver is limited in how far he or she can arbitrate disputes. There have been cases of drivers being stabbed. Modern buggy designs also take up more room.
  • The necessity to plan journeys - Disabled people do not want to have to advance plan everything in order to get accessible transport. they want the same rights as everybody else.
  • Bus announcements - Why isn't there a technological solution which allows bus destinations to be announced at bus stops?

Work Capability Assessment

Neil Coyle, with Tom Pollard of Mind

The Work Capability Assessment (WCA) workshop was led by Neil Coyle, with Tom Pollard of Mind.

Neil Coyle discussed issues raised in our response to the Harrington Year 3 call for evidence. He identified 4 problems:

  1. High appeal rates - This has a human cost in stress and even suicides for disabled people. There is also the cost of wasted appeals, which are expected to increase with the introduction of PIP.
  2. Support for disabled people into work - We have seen little evidence of this.
  3. Lack of evidence of disabled people getting back into work from referrals.
  4. The introduction of mandatory consideration of revision before appeal will deter people from appealing.

Tom Pollard gave a presentation on supporting a legal challenge of the WCA and the work of the Evidence Based Review. You can view a powerpoint or word version of Tom Pollard's presentation.

Key issues arising from Q&A:

  • Pressure for short term outcomes - Successful outcomes for disabled people take time. Outcomes suffer in pressurised work environments. Mind has made proposals regarding this.
  • Side effects of drugs - The WCA takes little account of drugs and how they interfere with the ability to work. Mind has also made proposals regarding this.
  • Coping with pain - There is no scoring for chronic pain.
  • Use of wheelchairs - The WCA takes little account of the barriers to using wheelchairs and the variance and reliability of wheelchair designs.
  • Atos - The WCA picks on the most vulnerable people. The Government needs to engage with disabled people because the test is not fair. Mind have been trying to assemble case studies.
  • Use of GP - More use should be made of the GP although GPs not always very good on mental health issues.
  • Support for employers - There needs to be more information given to employers to highlight tax breaks and the access to work scheme.
  • Deaf people - The WCA fails to appreciate the problems facing deaf people.
  • Professor Harrington's failure to attend - The workshop would have liked to ask him questions and wonders who will replace him. Harrington's final report is due next week. his replacement is not known.
  • Third party organisations - Third party work programme providers are a problem. Expectations are high but unrealistic.