Written evidence from the Disability Rights UK (HAB0051)


Disability Rights UK (DR UK) is led by people with lived experience across the spectrum of disability and health conditions, including mental health conditions, learning disabilities, dementia and autism.

DR UK operates a second-tier welfare rights advice line where we assist their front-line advice workers with supportive information and advice.

We are a pan disability membership organisation led by Disabled people seeking change. Our membership includes individual Disabled people and 440 organisations working on their behalf including Disabled people led organisations.

Our submission is set out under the following six headings –

1.    Improving the quality of assessments

2.    Work Capability Assessment (WCA) reform

3.    Personal Independence Payment (PIP) reform

4.    Moving from child DLA to PIP

5.    No to a ‘single new benefit’

6.    Learning from Disability benefit reform in Scotland


  1. Improving the quality of assessments

The DWP should automatically issue claimants with a copy of their assessment report, in their required format. This would increase scrutiny and therefore help to raise standards. Assessors would know that all claimants will be able to see any inaccuracies or misleading statements, which should encourage greater care and accuracy.


Claimants should have choice as to the assessment method: face-to-face; audio; video; or on the papers.


Claimants should have a clear option of audio or video recording of non-paper assessments. Assessment reports often contain errors and many Disabled people do not trust assessors to act fairly and independently.


Where an assessment diverges from the account given of their condition by the claimant, this difference must be clearly explained.


There is a particular need to take into account fluctuating conditions and not address them by means of a “snapshot” or “typical day”.


Where a condition is known to deteriorate over time, the system should also note unsuccessful claims and automatically advise the claimant at scheduled intervals that a new claim may succeed if their condition deteriorates at a later stage.


A frequent criticism of the assessment process is that assessors often lack a sufficient understanding of the claimant’s disability or health condition.


If an assessor does not have specialist knowledge of the condition they are assessing, it must be a requirement that they have accurate and up-to-date information readily available and can consult with experts who do have such knowledge. The support system for assessors must be designed accordingly.


The DWP should work with contracted assessment providers significantly to improve assessors’ overall knowledge and understanding of disabilities and long-term conditions (including that a claimant may experience more than one at once, possibly both a physical and a mental health condition).


The DWP should bring medical assessments inhouse instead of outsourcing to private sector companies.


This may not improve trust in the  assessment process in the short term. But it This would improve the management of this service and also mean better public accountability of it.


Due attention must be given to practical considerations relating to an assessment, especially where travelling is involved. For example:

there should be flexibility regarding the location of face-to-face assessments;


The DWP must re-establish direct responsibility for assessments quality and publish regular improvement plans to ensure assessors are conducting assessments consistently and to a high standard.


There should also be established an independent Regulator of Benefit Assessments.


The frequency of re-assessments for all benefits related to disability and health should be reviewed. The objective should be to eliminate pointless or excessively frequent reassessments, which are wasteful of resources and stressful for claimants. The Green Paper’s thinking around the projected Severe Disability Group is a step in the right direction here.


In terms of easing the concerns of Disabled people in relation to medical assessments we submit that the best way forward would be the DWP’s adoption of the type of reforms planned by the Scottish Government.


  1. Work Capability Assessment (WCA) reform


There should be a thorough review of the various assessment criteria (“activities” and “descriptors”). There should be meaningful involvement of Disabled people and Disabled Peoples Organisations and in this process, across a range of disabilities and health conditions, physical and mental, to ensure criteria are fair and truly reflect a person’s capacity to work or the extra costs they face.


The WCA ( PIP descriptors) should allow more scope for claimants to describe the way that their disability affects them on a day-to-day basis. This would assist the assessor to understand more fully the extent of how the claimant’s disability affects their daily life.


There is a particular need to take into account fluctuating conditions and not address them by means of a “snapshot” or “typical day”.


Where a condition is known to deteriorate over time, the system should also note unsuccessful claims and automatically advise the claimant at scheduled intervals that a new claim may succeed if their condition deteriorates at a later stage.


Over the years, Disabled people have consistently highlighted a range of structural issues with the WCA, including the system’s inability to account for the barriers that Disabled people face when seeking to access employment.


A points-based system where a blanket assessment criterion is imposed on everyone is not suitable. It fails to generate an understanding of how someone’s condition impacts specifically on them, and regularly results in aspects of their condition being undermined or missed.


Instead, an assessment needs to follow a less prescriptive format, and provide the opportunity for individuals and their supporting evidence to explain for themselves the impact of a condition, including how it varies over time, not just on a specific day.


It is also important that assessors do not work from a set script, and instead are able to respond to the information they are presented with, asking questions that are more personalised and suited to the individual. This is particularly important for ensuring that assessments don’t inflict physical or emotional harm.


However, there is a need to for a more holistic WCA would take into account “real world” factors such as mobility issues, including access to suitable transport; skills gaps; and the actual availability of relevant employment in the local economy.


The way the WCA currently assesses people, and the questions it asks, simply are not appropriate for correctly assessing people’s ability to access work.


DR UK is a member of the Disability Benefits Consortium (DBC).


Outlined below is the DBC’s policy on how a new WCA should test with Disabled people through DPOs and with other disability organisations.


The benefit of such an approach would be that it:


There should be a holistic assessment of people’s barriers to work, separate from an assessment of disability-related costs (PIP) taking into account factors such as employers’ attitudes, mobility needs, lack of transport and skills gaps.


The assessment must be able to respond to individual need and be able to acknowledge that some people may never be able to work.


A future assessment would still separate claimants into two groups similar to now, but with one completely exempt from reassessments and the other still being reassessed, but less frequently than currently – to increase people’s security and stability and therefore likelihood of better managing their health, living well, and potentially also getting back into work.


There should be a focus on supporting people instead of any work-related conditionality or sanctions.


Claimants should have access to a support coordinator following the assessment, who will help the individual draw up a support plan, on a voluntary basis.


For the support plan to be meaningful, the Government needs to fundamentally improve the support on offer for Disabled people across a spectrum of needs.


There should be a review of benefit levels to ensure that Disabled people do not fall below the minimum income standard.


There should be an independent regulator, to make sure that Disabled people’s testimony is recorded fairly and accurately and that people are not put at risk of harm when they apply for benefits.


  1. Personal Independence Payment (PIP) reform


The main disadvantage to the current system of PIP descriptors, is that it does not accurately take into account the broad additional costs that many Disabled people face as a result of their condition outside of the narrow focus of the daily living activities.

For example, the PIP assessment fails to take into account the additional costs of high heating bills if a person is housebound, or increased water bills because a person is incontinent and must regularly wash their clothes.

We would like to see an assessment which accurately reflect these additional costs.

In the short term, the Government needs to acknowledge the widespread criticisms of its proposed PIP reforms and press the off button on them.

The distance requirements within the PIP mobility activity should be extended from 20 metres to 50 metres to not make an artificial distinction with very limited medical or practical validity.

In addition, a “substantial health risk criteria” comparable to that within ESA and UC needs to be introduced where someone may qualify for PIP even if they do not have sufficient points where there may be a risk to their health if it is not awarded. This provides an essential failsafe where someone with severe disabling effects cannot be made to fit the arbitrary rigidity of the descriptors.”

A thorough independent research study of the actual extra costs of disability is needed with a view of investing in a new benefit that will accurately and fairly assess individual Disabled people’s extra costs.

It also needs to commission a report examining the cumulative impact on Disabled people of welfare reform to date.

  1. Moving from child DLA to PIP

The transition from child DLA to PIP is particularly challenging. Supportive, high-quality assessment and decision-making and readily available advice and advocacy are crucial.

Parents of disabled children are often exhausted by constant medical procedures and appointments, constant battles to access services and equipment they need at the time that they need it, in addition to the day-to-day worry and huge burden of responsibility of keeping their child healthy, happy, and developing. Child DLA or PIP should assist them – not provide them with another complex battle to fight.

As the DWP already contacts families to identify if an appointee is needed, this call could be used to explain the differences between DLA and PIP and highlight that independent advice can help. 

Also, the rule allowing DLA to continue to age 17 to facilitate a claim to be determined could be modified so awards of DLA can continue up to age 17 if PIP is refused, to allow mandatory reconsiderations and appeals to be completed.

The upper age limit for child DLA needs reviewing. In Scotland (where new benefits are being introduced to replace DLA and PIP) it is already the case that young people receiving DLA can now continue to get it until they turn 18, although they can opt to move to PIP earlier if they so wish. We recommend that this provision should be extended to the rest of the UK.

  1. No to a ‘single new benefit’

We are very concerned of the Health and Disability Green Paper suggestion that Ministers could create a “new single benefit” so as to simplify the application and assessment process..

Given the stress, worry, fear and distrust PIP assessments (and work capability assessments) cause Disabled people, the prospect of only having one assessment and not two is only superficially attractive at best.

Given the repeated stress the Green Paper gives to “affordability” we believe the DWP is being disingenuous and the actual reason for the single benefit suggestion is likely to be reducing expenditure.

Any significant reduction in disability benefit spending can only happen if new rules exclude more Disabled people or benefit amounts were reduced.

Is the promotion of a new simplified single benefit a way of achieving both?

Our concern is that a single benefit would be created by merging PIP – which contributes towards the extra costs of disability – with income based ESA and Universal Credit.

This would be unacceptable as it would likely exclude many Disabled people who rely on PIP to try to maintain independence. And the whole purpose of PIP is to compensate for the extra costs of disability.

At present, a Disabled person in receipt of both benefits can challenge a flawed assessment while still receiving the other benefit. A single benefit has the potential to remove all a person’s income in one sweep.

Disabled people would not support a single assessment if it meant PIP would be abolished and with just a ‘single disability benefit’ with increased eligibility conditions remaining.

The benefits payable in recognition of the extra costs of disability (such as DLA, PIP and Attendance Allowance) are not means-tested, in recognition of the fact that such costs arise at any level of income. Nor are they contribution-tested, in recognition of the fact that many Disabled people will not have had the opportunity to build up contribution records.

We vehemently oppose a single income replacement and extra costs benefit that would introduce means-testing into extra costs benefits and displace contributory benefits.

  1. Learning from Disability benefit reform in Scotland

The Health and Disability Green Paper offered case studies of four countries – Australia, France, New Zealand and Switzerland – that approach disability benefits in a different way to the UK.

Three of these at lease appear to provide a less generous system or offer less control to Disabled claimants over their support.

However, the Green Paper is silent about the disability benefit reforms to be made by Scotland, despite it starting from the same DLA, PIP and AA benefit regime base as the rest of the UK.

In January 2020, the Scottish Government published Welfare reform: impact report on benefits for Disabled people. This too, like the Green Paper, was informed by consultation with Disabled people and their organisations. However, the contrast between the two documents is stark.

In obtaining evidence from Disabled people, the Scottish Government found:

All the above sounds very familiar.

Yet the reform actions taken in response to these findings are very different to those identified in the Green Paper.

Among the several subsequent Scottish reforms, based on the testimony of Disabled people include:

The Scottish Government explain:

“Each form of assistance has been designed in a person-centred way, consulting people with lived experience and experts in the social security system to ensure that Disability Assistance is delivered in a way that meets the needs of the people it is intended to support.

A full public consultation on proposals was undertaken earlier this year [2019], closing on 28 May and with a wide range of stakeholders and individuals responding. This included 189 individuals and 74 organisations.

The majority of respondents were broadly positive about the proposals set out in the consultation document.

The Scottish Government has considered carefully the feedback provided by respondents, as set out in the Scottish Government response report, published on 28 October 2019.

A number of amendments to proposals have been made in light of feedback including, for instance, the extension of the proposed number of days to request a redetermination from 31 to 42 calendar days.

This change ensures that clients have a sufficient window to receive welfare rights advice, or other support, before considering whether to challenge their award.”

All the above are very welcome changes.

Having listened to Disabled people, this is the way Scottish Government policy, unlike the UK Government’s, has been framed to alleviate Disabled people’s stress and anxiety and a lack of trust in the disability benefits system.

We would recommend that the type of reforms being introduced in Scotland are ones that should be introduced within the rest of the UK.


November 2021