Written evidence from All Wales People First (HAB0092)


About us:

All Wales People First is the united voice of self-advocacy groups and people with learning disabilities in Wales. It is an organisation for and led by men and women with a learning disability. It is unique in Wales in that it is the only national member-led organisation that represents the voice of men and women with a learning disability.

All Wales People First is steered by a National Council of members with learning disability, which are elected at local level through the 22 local authority areas across Wales. The National Council ensures that people with learning disability are included as active citizens in Welsh society.


1. How could DWP improve the quality of assessments for health-related benefits?

The assessment criteria look as though they should adequately meet the support needs of people with learning disability. This sadly does not translate in to practice in the experience of our members with learning disability. In our experience this is fundamentally due to training and accessibility issues.


People with learning disability and People First Groups tell us that navigating the health-related benefit systems is always a postcode lottery and perhaps a lucky dip in terms of whether an assessor possess any understanding of learning disability, adequate skills to undertake the assessment, and any empathy.


An understanding of learning disability is crucial in terms of interpreting the information provided at an assessment. Lots of People First members with learning disability feel anxious being questioned about their ability by someone they perceive as an authority figure, and thus often present with a ‘can do’ attitude to the questions being asked of them. On this basis a button pressing assessment rarely yields an accurate outcome for people with learning disability. Yet an assessor skilled in working with people with learning disabilities would be better equipped to work with the person being assessed properly to get to the root of their actual support needs. Poor quality initial assessments lead to stressful delays and severe impact on health.


It is important that the entire process is accessible for people with learning disabilities. This extends to written and verbal communication as well as the assessment process. Several members with learning disability have had their benefits stopped without their knowledge because assessment requests were not made in a way that is accessible to them. The first sign of something being amiss was when there were no funds available to withdraw. Such situations lead to crisis and severely impact mental health.


All information and correspondence and information needs to be written in plain English and Easy read must be available. It is vital that DWP ensures that benefit recipients with learning disability have received and understood what is required of them prior to changing any benefit.


Delays with accessible paperwork and poor communication puts people with a learning disability at a disadvantage when engaging with benefit systems.


If people who are being assessed are not equipped with the right tools to understand what is expected of them and being asked of them, then it is a flawed system which will set them up to fail.


a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

As we have explained above, in our experience the system continues to fall short on its delivery in practice, despite looking reasonable on paper. Whilst we agree that criteria changes have been made for the better to ensure that people with learning disability are assessed fairly on point scoring, the process continues to be unnecessarily stressful for several reasons as above, and as follows:


2. Are there any international examples of good practice that the Department could draw on to improve the application and assessment processes for health-related benefits?



3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

The ‘Prompting’ and ‘supervision’ elements provide a fairer assessment criteria for people with learning disability who do not have physical impairments. Points weighting for non-physical impairments are adequately weighted and many of our members have been able to access adequate benefits to meet their support needs based on the points weighting.


It is not necessarily the scoring criteria which places people at a disadvantage though, it is the quality of the process itself which introduces disadvantage. For example, the way some assessors interpret what is presented and the inconsistency in the way the criteria is applied.


There are several examples where our members with learning disability have attended initial assessments or benefit review assessments and the assessment findings reports have been littered with errors and are alarmingly different to what was said during assessment. Many of these reports appear to be standard ‘cut and paste’ text with no real substance based on what was presented at the assessment meeting.


4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

The same process, quality and accessibility barriers apply to ESA despite the descriptors appearing fair.


5. DLA (for children under the age of 16) and Attendance Allowance usually use paper-based rather than face-to-face assessments. How well is this working?



a. Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?

Many of our members do not have access to a computer or smart device, or the skills to be able to engage with online processes.

On the contrary, some members find online processes more accessible. Choice is crucial. One size does not fit all where accessibility is concerned.


As soon as it was introduced, the online PIP process presented stressful barriers to many of our members with learning disabilities who are digitally excluded. The DLA paper system was not without its issues either though. Both paper and electronic based systems rely on the skills of the person filling them in. In our experience the paper-based system for adults receiving DLA was so difficult, it often needed specialist support to complete. It was not always clear what was being measured and the complexity and repetition of questioning often gave the perception that questions were designed to ‘trip up’ applicants with contradictions.


Clear and easy paper and electronic systems need to be available.


6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

This would be devastating and would undermine applicant’s right to speak up for themselves about issues which affect them. Although assessment processes are stressful, if done properly they provide an opportunity for people with learning disability to convey for themselves what barriers they experience and what support needs they have. Implementing this degree of clinician jurisdiction would not provide a solution to improving the system for our members with learning disability.


Not all people with learning disability are known well or at all by a clinician. Relying on clinician input could therefore provide a limited one-dimensional textbook perspective of how a person’s impairment affects them.


Not all clinicians have a thorough knowledge about learning disability and learning disability issues. Whilst clinician input is often important in terms of providing supporting information to a benefit application, relying solely on clinician input means that assessment outcomes could be driven by assumptions rather than facts. This would not contribute to a fair and accurate assessment process.


7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

This suggests that there is a flaw in the initial assessment process. We have explained the flaws which affect people with learning disabilities.


Assessors need adequate learning disability training in order to get it right the first time. It is essential that training is provided by people with learning disabilities themselves.


a. What could DWP change earlier in the process to ensure that fewer cases go to appeal?

Clear processes, experienced well trained assessors. Fair and consistent assessments.


It is essential that assessors have a suitable skillset and adequate learning disability training in order to get it right the first time.


8. Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (eg. PIP and ESA)?

Yes, one assessment, better join up and communication between agencies would remove the stress of being passed back and fore with queries. It could facilitate simplification of the application process, and would inevitably reduce the need for support required by applicants when they engage with the benefit process.


In our members’ experiences there is currently effective join up at the back end of the system/s such that when one benefit is withdrawn, this has a cascading affect in automatically stopping other benefits. Our members with learning disability feel it would be beneficial to introduce a similar join up at the front end of the process.


9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?


a. (For people claiming) Would you like to be able to manage your benefit claim online?

Our members who claim health related benefit tell us this is good in the context of providing people with choice, but solely digital would put digitally excluded people at a significant disadvantage if presented as the only means to manage a benefit claim.


Adequate telephone assistance for paper-based applications is essential for people who are not able to manage their claim online.


b. What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process?

It could potentially reduce bureaucracy and introduce consistency. The current postcode lottery experienced by our members with learning disability is a significant source of stress. Some assessors possess empathy and some understanding of learning disability, while others are hostile and do not posses the skills to glean a true picture of an applicant’s support needs.


Our members with learning disability tell us that the current agency delivery is stressful when queries arise. Often people are left in limbo while the agency and DWP deflect ownership of the issue in question.


Removing the current agency delivery could also help to challenge any perceptions that agencies are incentivised to assess harshly. The current use of different agencies is inconsistent in terms of the benefit outcomes it delivers for people with learning disability. Bringing the process in-house could provide a fairer and consistent system.


10. What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?

Access to support staff was difficult and in some cases impossible for some people with learning disability during the pandemic. Some people with learning disability would not have had the means to engage with the benefit system without support, irrespective of the format.


Although the assessment flexibility introduced during the pandemic meant that benefit applications could continue where possible, the telephone assessments did not provide a suitable long-term improvement to the system.


Our members with learning disability and their support workers experiences of telephone assessments were not good. Telephone assessments do not provide a suitable platform for a person with learning disability to be supported properly and this exacerbates the issue of unskilled assessors undertaking the assessment. By experience People First support workers tell us it is rarely possible for an assessor to gauge a true picture of a person’s needs by sticking verbatim to the assessment questionnaire without any face-to-face interaction.


As a consequence, several people they supported were turned down on assessment by telephone, despite having high support needs.


a. Is there a case for making some of the changes permanent?

According to our members experiences there is no case for introducing telephone assessments as a long-term solution. Reducing reassessments for people with lifelong conditions such as learning disability is a more practical solution.


11. Most assessments for Industrial Injuries Disablement Benefit were suspended during the pandemic. What has been the impact on people trying to claim IIDB?


a. Some IIDB claimants will receive a lower award than they might have, due to the suspension of assessments, because IIDB awards are linked to age. Should the Department compensate these claimants? How?


b. What lessons could the Department learn for how it deals with these claims in future, in the event of further disruption to normal services?


12. DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants weren’t able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?

Some People First group lost contact with several members during the pandemic when face to face contact ceased. Many applicants with learning disability would not have had the means to engage with the benefit system.


Things that could help remove barriers in times of crisis are as follows:


a. How can the Department best help the third sector to support claimants in their applications?

Third Sector organisations need adequate resources to provide support to disabled people who need to engage with the benefit system. Their resources are thinly stretched across ambitious delivery plans, and many are not equipped financially or with adequate staff resources to deliver consistent one to one support for benefit applications.


Non-profit groups such as regional People First Groups do the best they can to help people with learning disabilities, and in the interests of serving their members with learning disabilities in the best possible way, they deliver above and beyond what they are funded to do, especially so during the pandemic.


People First groups provide facilitated self-advocacy services to people with learning disability. Self-advocacy is the ultimate preventative measure in terms of reducing dependency on care provision. Self-advocacy promotes independence and choice and supports people with learning disabilities to grow their skills to speak up for themselves.

Proper investment around benefit application support is needed for Third Sector Organisations and non-profit self-advocacy groups. Benefit support is resource intensive and often detracts from self-advocacy activities which are essential to growth and development for members with learning disabilities. 


Providing literature which explains the process and criteria in plain language and easy read is also essential to equipping people with learning disabilities and their supporters with the right tools to engage with the application process.


13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

Getting it right the first time is essential. Repeat assessments and long waits for assessment and reassessments are intensely stressful for people with learning disabilities who need benefit support. Our members tell us that the anxiety is debilitating and has a huge effect on mental wellbeing.


The impact on physical and mental health when people with learning disability engage with health-related benefit systems cannot be over-emphasised.  Several members with learning disability have had negative experiences such as having support stopped or declined; being left with no money to live on for a long period; subsequently being re awarded the support on appeal.


The current health benefit rhetoric is so often an unnecessarily terrifying and unjust experience for many applicants with learning disability. In order to improve on the status quo, it is essential that staff receive adequate training to do a better job, and the barriers around clarity of information are removed. 


14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?

The frequency of re-assessment for people with lifelong and/ or degenerative conditions should be more along the lines of the previous DLA system where some recipients could receive a lifelong benefit. Unnecessary re-assessments mean that there are less available appointments for first time applicants. Reducing unnecessary re-assessments would not only reduce assessment related stress for some applicants who would no longer need a re-assessment, it would also reduce the wait times for assessments which are needed.


a. How effectively does the “assessment rate” for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?


15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?

The DWP could learn from the Scottish Government’s holistic model where all assessments are covered in one session, and the reduced need for re-assessment for people with certain conditions.


a. PIP started rolling out in Northern Ireland in 2016. Is there evidence that the Department learned from the experience of rolling out PIP in the rest of the UK?


16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?

All Wales People First is an organisation for and led by men and women with a learning disability. We were regularly invited to DWP stakeholder meetings when PIP was first introduced. This has not been the case for some two to three years though. We would welcome the opportunity to re-engage with any current stakeholder groups.

In order to get things right the first time, in our experience it is crucial that systems are co-designed well from the outset before they are introduced.


a. What steps could the Department take to improve its engagement with stakeholders?

Consult with member-led organisations – people with learning disabilities themselves.

Engage people with learning disabilities in and accessible and meaningful way.



December 2021