Pathways to Work: Our Submission
The below is our submission to the government consultation on the Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper.
Consultation Questions
Chapter 2: Reforming the structure of the health and disability benefits system
1. What further steps could the Department for Work and Pensions take to make sure the benefit system supports people to try work without the worry that it may affect their benefit entitlement?
It is essential that the department clearly and proactively communicates any new protections that allow claimants to try work without being penalised, such as guarantees against immediate reassessment or loss of benefits, if a job proves unsustainable. The department needs to rebuild trust with claimants as we heard multiple testimonies from claimants, during our recent APPG on Poverty and Inequality inquiry on the disproportionate impact of poverty and inequality on disabled people, describing the process of accessing disability benefits as stressful and dehumanising. Many claimants live in constant fear of having their benefits stopped. A submission from lived experience described their experience of claiming benefits; “The regular text messages saying that payments may be stopped isn’t just a case of “pocket money” being stopped or something like that – it means that I will not be able to pay my rent or feed myself, and will end up homeless and then die on the streets. It is like getting a regular death threat every week.” The department needs to ensure that there are proper mechanisms in place to guarantee that every claimant is fully protected from losing disability related benefits and facing reassessment and that no one falls through the cracks if work proves to be unsustainable.
We would like to see the government go further and adopt Disability Rights UK’s recommendation that individuals in the Limited Capability for Work and Work-Related Activity (LCWRA) group be guaranteed the right to return to their previous level of benefits, without the need for reassessment, for up to two years if they enter employment but subsequently find they are unable to sustain the job due to their health condition. Fundamentally, the system must shift from one of conditionality to one of holistic support. That includes ensuring work is truly accessible, flexible, and inclusive for disabled people and people with long-term health conditions.
2. What support do you think we could provide for those who will lose their Personal Independence Payment entitlement as a result of a new additional requirement to score at least 4 points on one daily living activity?
We believe the government should abandon its plans to introduce new eligibility criteria for the Personal Independence Payment (PIP). PIP is not an out of work benefit and the new additional requirement will not support disabled people into work, it will just push more people into poverty and destitution. Our recent APPG on Poverty and Inequality report in response to the Green Paper proposals cites a number of examples of PIP claimants saying that losing their PIP support will mean they will either have to reduce their hours or give up work entirely. This goes against the government’s stated aim of creating a ‘pro-work and sustainable benefits system’.
The ramifications of the proposed 4 point rule will be catastrophic for disabled people and those with long term health conditions. A recent FOI request submitted by whatdotheyknow.com and Benefits and Work, shows that 87% of standard daily living PIP awards get fewer than 4 points in all activities. If the 4 point requirement comes into force, this would virtually abolish the standard daily living element of PIP. The Government has offered no evidence that those disabled people who rightfully score points over a series of PIP daily living activities, but not a single 4 points score have any less support needs or less disability related costs. The FOI also revealed that 13% of PIP claimants currently receiving the enhanced daily living rate are set to lose the entirety of their claim under the new 4 point proposal. This clearly contradicts the government’s claim that those with the most severe disabilities will be protected from any cuts to disability benefits. As evidence from Z2K’s advice services shows, double amputees, stroke survivors and people with psychosis will be among those who could potentially lose support.
This Green Paper includes a total of 22 policy changes, but only 11 are being consulted on as part of this consultation. The government has previously stated being committed to “putting the views and voices of disabled people and people with health conditions at the heart of everything we do.” The government has clearly not lived up to this promise and must engage and meaningfully consult with disabled people and disabled people’s organisations. We are calling for the government to redesign the social security system using co-production methods to ensure the new system is fair, humane and accessible.
We agree with Disability Rights UK’s assessment that the proposed 4 point rule is “an arbitrary reform aimed solely at brutally cutting PIP expenditure.” Taking away support from those who require assistance to cut up their food, to wash themselves, to dress themselves and to go to the toilet is callous and wholly unnecessary. Our Spirit Level at 15 report lays out a number of progressive taxation policies which would raise billions of pounds for the treasury annually. Simply equalising tax rates on capital gains with income tax rates would raise £14 billion a year according to IPPR. This is nearly 3 times more than the projected £5 billion that will be “saved” as a result of these proposals.
We are also deeply concerned that the proposed changes to PIP eligibility criteria will increase child poverty. Analysis by the Child Poverty Action Group (CPAG) shows 870,000 children are living in families receiving PIP, with a third of them already living in poverty. CPAG also estimates that the long term impact of the proposed cuts is an additional £5 billion cut to benefit spending, pushing 100,000 more children into poverty. The Women’s Budget Group (WBG) also points out that child poverty stands at 34% in families where someone is disabled, compared to 27% in families where no one is disabled.
The group also notes that the proposed cuts will be devastating, particularly for disabled women and carers. Disabled women have already borne the brunt of cuts to social security and public services, experiencing an 11% drop in living standards since 2010. PIP is also a gateway benefit for unpaid carers, the majority of which are women, to be able to claim Carer’s Allowance. Tightening PIP eligibility criteria will not only affect disabled people, it will have a knock-on affect on carers ability to claim Carer’s Allowance. WBG have also raised concern about the impact the proposed cuts will have on disabled victim-survivors of domestic abuse as the changes will make it harder for survivors to achieve financial independence from abusers. The group point out that “disabled victim-survivors are nearly twice as likely to experience economic abuse compared to non-disabled women, and are nearly four times more likely to have a partner or ex-partner stop them, or try to stop them, accessing benefits that they or their children are entitled to.”
3. How could we improve the experience of the health and care system for people who are claiming Personal Independence Payment who would lose entitlement?
We reject the premise of this question. No one who is currently eligible should be losing their PIP entitlement. Health and social care is a vital provision, however, it does not mitigate the effects of PIP being removed. PIP is designed to meet the additional costs of being disabled, from needs for accessible transportation to a personal support worker to assist someone out of bed and into their wheelchair. Removal of PIP changes the public policy of helping to meet the additional costs of being a disabled person, to punishing people for being disabled and burdening disabled people and their families with the costs of their existence.
Social care services are already under extreme pressure due to chronic underfunding with the recent Comprehensive Spending Review failing to deliver the level of investment needed. Expecting the social care system to absorb the impact of PIP cuts is both unrealistic and irresponsible. In fact, cutting PIP will increase pressure on the NHS and social care services by reducing disabled people’s ability to live independently, maintain employment, and manage their health condition. It risks pushing more people into crisis and will increase demand for services that are already overstretched.
The government must; uphold and protect PIP as a non-means-tested benefit to meet the extra costs of disability, address exorbitant social care charges – which already create financial hardship and commit to building a properly funded National Care Service that is free at the point of use, accessible and based on need and not ability to pay.
4. How could we introduce a new Unemployment Insurance, how long should it last for and what support should be provided during this time to support people to adjust to changes in their life and get back into work?
The proposal to merge Job Seeker’s Allowance (JSA) with Employment Support Allowance (ESA) to create a new “Unemployment Insurance” carries a number of risks for claimants with disabilities and long term health conditions. The proposed Unemployment Insurance would replace contributory ESA, which currently includes an indefinite element of support for disabled claimants, with time limited Unemployment Insurance. Disabled people with long term or fluctuating conditions could lose support once the time limited Unemployment Insurance ends. There is also no guarantee that claimants would be able to access Universal Credit once the time limited support ends. The government should conduct a full impact assessment to determine how many disabled people and people with long term health conditions will be affected by this proposed benefit merger, particularly those who will not be eligible to claim Universal Credit. People with work-limiting health conditions should be protected and exempted from the requirement to actively seek work in order to claim Unemployment Insurance.
Any proposed Unemployment Insurance scheme must go further than short-term financial assistance. It should provide genuine, long-term support that recognises the complex barriers many people, particularly disabled people and people with long term health conditions face when trying to enter or return to work.
To be effective Unemployment Insurance should last for a minimum of 18 months, with options to extend based on the needs of the individual, especially for those with health conditions or caring responsibilities. A strictly time limited approach would run the risk of pushing people into unsuitable work. The support provided by the DWP should be personalised to an individual’s particular set of circumstances. Accessible and inclusive employment practices should be supported including promoting flexible and remote work, providing workplace adjustments, and tackling discriminatory recruitment practices. Workplaces must be made more adaptable and people should not be forced to adapt to inflexible systems.
When considering a new Unemployment Insurance scheme it is important to consider the considerable barriers disabled people face when seeking employment. Disability charity Scope found that disabled applicants make 60% more job applications than non-disabled people and about half of disabled applicants get an interview, this is compared to two thirds of non-disabled applicants. They also found that job adverts are often posted on inaccessible platforms which aren’t compatible with assistive technology, interview venues are often inaccessible, interview test formats are not always accessible and negative attitudes about the abilities, skills, and capabilities of disabled people are pervasive.
Our Stories for Change series includes an interview with Amos, who shares his personal journey as a disabled person, highlighting the deep rooted societal and systemic barriers that continue to limit disabled people’s opportunities, particularly in employment and public life. Amos calls for a complete mindset shift in how disabled people are perceived. He argues that disability is something that will affect most people eventually, and that society must act now to make inclusive changes, rather than waiting until disability becomes personal.
5. What practical steps could we take to improve our current approach to safeguarding people who use our services?
The government should implement the recommendations from the Work and Pensions Select Committee’s Safeguarding Vulnerable Claimants report published in May. The committee calls for a new statutory duty to be placed on the DWP to safeguard claimants. The duty would require the DWP to refer vulnerable claimants to appropriate agencies that have a duty of care. The committee also recommends that all major changes to social security policy undergo a formal safeguarding assessment carried out by the DWP’s Chief Medical Adviser’s team, to ensure potential risks to claimant health and wellbeing are properly assessed.
Although we recognise that safeguarding mitigations alone can only achieve so much, when public policy is chosen with the full knowledge that it will cause further distress, hardship and deaths of disabled people. The government must take heed of the findings of reports by The UN Committee on the Rights of Persons with Disabilities, which found that ‘grave and systematic violations’ of Disabled persons’ rights had taken place because of austerity measures and welfare reforms, including the delays in satisfying PIP claims and appeals, since 2010, which had ‘disproportionately and adversely’ affected the rights of disabled people. More than 600,000 disabled people in the UK have £10 or less per week to pay for food and other costs; around a quarter surveyed had missed meals or not heated their homes. (Leonard Cheshire, 2022) The PIP system inherited by the current government was already being implemented in a harmful way before the added harms of this Green Paper. Over 7,990 people died within six months of having their PIP claim rejected (DWP, 2019), yet 72% of PIP appeals are won by claimants (Disability Rights UK, 2019). 17,000 people have died during a five-year period, while waiting for their PIP claim to go through (DWP, 2019). Doctorate researcher Porter (2020) argues “potentially thousands of people died before having access to the money they needed to keep them out of poverty” and that they were entitled to, therefore PIP is an example of necropolitics (Mbembe, 2019). The human cost of this policy was highlighted in the Museum of Austerity, where visitors wore virtual reality headsets to hear the testimonies of grieving families, and to meet the holograms of disabled people who died. Similarly, the Deaths By Welfare Project documents the human cost of policy decisions made without regard for the grave consequences. Furthermore, the opportunity for private contractors to profit from this deathly approach to PIP reduction targets, exposes the discrimination, greed and inhumanity, from which a government should protect the people. With the DWP having been cited in Coroner’s cause of death reports and studies identifying excess deaths of disabled people while awaiting their PIP appeal, this is an area of grave concern. Given the findings by the UN, specialist organisations and researchers on this matter, it is alarming that the government is proposing further cuts with the foreseeable consequence of worsening hardship and even more excess deaths of disabled people. This is a breach of disabled people’s Human Rights and the government’s obligations under the Public Sector Equality Duty. The Equality and Human Rights Commission has highlighted these breaches previously.
Chapter 3: Supporting people to thrive
Our new support offer
6. How should the support conversation be designed and delivered so that it is welcomed by individuals and is effective?
We believe that participation in “support conversations” should be voluntary as any conversation that is conditional cannot be considered genuinely supportive. These conversations must be conducted by fully trained professionals who have a deep understanding of both the social model of disability and trauma-informed care. A “supportive conversation” is only meaningful if it is backed by real support and guaranteed pathways to adequate income, housing, health and social care and other essential entitlements.
As previously stated, we believe the social security system needs to be completely redesigned. Disabled people and disabled people’s organisations have to be at the heart of creating a new system based on compassion, dignity and respect. Under the current system disabled people and people with long term health conditions too often do not receive the support they need and instead face complex bureaucracy and cuts in support. Claimants are often treated with suspicion rather than receiving the necessary support.
7. How should we design and deliver conversations to people who currently receive no or little contact, so that they are most effective?
Engagement with people who currently receive little or no contact should come from highly trained and experienced professionals with expertise in trauma, disability, and long-term health conditions. These professionals should use a person centred and a trauma informed approach focused on enhancing quality of life and not pressuring people into work.
The aforementioned deaths caused by withheld PIP claims, most of which would go on to success at appeal stage, and the track record of insensitive delivery of PIP assessments and reviews by unqualified personnel, that have caused disabled people anxiety and humiliation have broken trust and confidence, caused trauma and even suicide.
A new baseline expectation of engagement
8. How we should determine who is subject to a requirement only to participate in conversations, or work preparation activity rather than the stronger requirements placed on people in the Intensive Work Search regime.
We recommend that the department considers the New Economics Foundation’s (NEF) Terms of Engagement report which shows that strict and prescriptive conditionality is both ineffective at getting people into work and is actively damaging, especially to disabled people and those with long-term health conditions. NEF recommends a move away from rigid conditions, such as mandating a fixed number of hours spent job searching each week or compelling claimants to apply for any job their work coach suggests, towards a more flexible and co-produced system. Instead of punitive conditionality, work coaches need to engage with claimants to find suitable roles that reflect their skills, experience, and aspirations, while taking into account their health, wellbeing and other life circumstances. This approach encourages positive engagement and is more likely to lead to sustainable and fulfilling work compared to the current target driven and compliance led regime.
9. Should we require most people to participate in a support conversation as a condition of receipt of their full benefit award or of the health element in Universal Credit?
No, we do not support making “support conversations” a condition of receiving benefits. People with disabilities, health conditions, and caring responsibilities should be exempt from any mandatory form of participation. Employment support should be available to everyone on a voluntary basis.
10. How should we determine which individuals or groups of individuals should be exempt from requirements?
People with disabilities, health conditions, and caring responsibilities should be exempt from any mandatory form of participation. Medical evidence should be used, such as GP letters or NHS records, rather than placing the burden on claimants to continually prove their disability or health condition through repeated and dehumanising assessments. Decisions must be made by qualified professionals with the understanding that many conditions are complex, fluctuating or are invisible. The system needs to move towards one based on trust and genuine support rather than one which treats claimants with suspicion and mistrust.
Delaying payment of the health element of Universal Credit
11. Should we delay access to the health element of Universal Credit within the reformed system until someone is aged 22?
We strongly oppose this proposal. This will only push more young people out of higher education and will mean fewer will be able to live independently. Such age discrimination is unjustified and would add to heightened vulnerability factors, especially for young adults without a support network, for example disabled care leavers and young adults without parental/guardian or carer support. Young people under the age of 25 already receive a lower rate of Universal Credit standard allowance and this proposal would only compound this existing injustice.
The government should also consider the long lasting and far reaching impact the Covid-19 pandemic has had on young people. Research from Oxford University shows that the mental health of young people deteriorated at a significantly greater rate than that of older adults during the pandemic, with increased levels of depression, anxiety, and social withdrawal persisting even as restrictions were lifted. A recent NHS survey found that one in four young people in England have a mental health condition. The government should expand support for young people, many of whom have struggled transitioning from education to employment as a result of the pandemic. We are also concerned by the rhetoric used by the Secretary of State for Health and Social Care who claimed that mental health conditions are currently being “overdiagnosed”. We believe the government should value physical and mental health equally and be aiming for parity of esteem in the healthcare system.
Disability Rights UK estimate that around 66,000 disabled people under 22 are set to lose around £45 a week in support, with some hit with a “double whammy” no longer qualifying for PIP or UC health component, losing at least £9,600 per year.
Raising the age at which young people start claiming adult disability benefits
12. Do you think 18 is the right age for young people to start claiming the adult disability benefit, Personal Independence Payment? If not, what age do you think it should be?
No, the age young people can start claiming adult disability benefits should remain at 16. Young people should have access to the necessary support and financial assistance as soon as they need it.
Chapter 4: Supporting employers and making work accessible
13. How can we support and ensure employers, including Small and Medium Sized Enterprises, to know what workplace adjustments they can make to help employees with a disability or health condition?
The department should provide resources and training through ACAS and EHRC to deliver guidance and training to employers on designing inclusive workplaces and cultures as well as making reasonable adjustments. Disability awareness and inclusion training should be a core part of business planning and not an afterthought. Employers should move away from the common practice of advertising all jobs as full-time as standard, when flexible and job-share options could work effectively and widen access to employment opportunities.
14. What should DWP directly fund for both employers and individuals to maximise the impact of a future Access to Work and reach as many people as possible?
The department should continue to directly fund assistive technology such as specialist reading and writing software, screen readers as well as headsets, voice recorders, back supports, footrests, chairs, desks and ergonomic keyboards. This is particularly important for disabled people who are either self-employed or work for a small or medium sized business, who may struggle to cover the costs of specialist equipment. No individual should be left with the burden of costs for adjustments as a disabled employee. Individuals and small businesses should not be left out of pocket, waiting unduly for reimbursement through the scheme. Unfortunately, there are many examples of small businesses being owed hundreds of thousands of pounds through the scheme and have either had to close or be threatened with closure.
Media reporting suggests that the department is planning to scale back on the support items eligible for funding through Access to Work (AtW) and looking to introduce a strict cap on the hourly rates it pays support workers, as well as limiting the type of tasks support workers are allowed to carry out and is potentially also seeking to end funding for support workers entirely other than for interpreters and job coaches. This would be hugely detrimental to disabled people with physical impairments who require support with physical tasks. Some disabled people have also reported their AtW support packages have been cut by between 40% and 80% upon renewal. The fact that cuts to AtW support are already taking place before this consultation has officially closed completely undermines the consultation process.
The government must prioritise clearing the current backlog of nearly 63,000 people waiting for a decision on their AtW application. The average wait time for a decision currently stands at 85 days and average wait times for a reconsideration stands at nearly 100 days. There are multiple accounts of disabled people waiting over 6 months for a decision on their AtW application. The current system is failing disabled people and must be urgently reviewed and made a government priority. Cuts to AtW will lead to disabled people being excluded from the workforce, especially for those whose needs go beyond reasonable adjustments. Reducing funding for AtW will also increase the likelihood of disabled people facing discrimination from employers. If the government is serious about supporting disabled people into work they must invest in and expand access to AtW. All aspects of the current scheme should be protected including costs for specialist equipment, assistance with transport costs, support workers and job coaches, support provided at job interviews and mental health support.
15. What do you think the future role and design of Access to Work should be?
The government must proactively engage with employers in the positive case for diversity, inclusive workplaces and unlocking disabled people’s full potential. The current policy proposals fail to address the attitudinal and structural barriers that discriminate against disabled people.
The current scheme should be protected from spending cuts and it should be further expanded. AtW is one of the few initiatives that does social good via improving opportunities for disabled people to participate in employment and public life. Cutting AtW would be counterintuitive and would go against the government’s aim of supporting more disabled people into work.
We would like to see grants go back to being awarded on a 3 year basis, so people are not forced to reapply for support each year. It should be made clear to applicants when their package of support will be reviewed, so they are fully aware of when they will be required to reapply. Overall, the system needs to be made less bureaucratic and easier to access. All stages of the application, assessment and award process should be clear and easy to follow. Applicants should be offered named advisors who they can contact throughout the application process to make the process as smooth as possible. Once grants have been awarded, named advisors should undertake regular check-ins to ensure that the support provided is suitable and meets the needs of the claimant. For example, specialist equipment such as assistive technology to support reading and writing, often requires frequent upgrades, so it is important that support is ongoing and does not end once a grant has been awarded.
AtW will require significant investment as applications to the scheme have significantly increased, access to the scheme should be further expanded and support should be personalised, quick and responsive. We believe that the government should actively engage and listen to disabled people and disabled people’s organisations to co-produce recommendations on how to improve the current scheme.
16. How can we better define and utilise the various roles of Access to Work, the Health and Safety Executive, Advisory, Conciliation and Arbitration Service and the Equalities and Human Rights Commission to achieve a cultural shift in employer awareness and action on workplace adjustments?
Disability equality training, based on the social model of disability, should be delivered through Acas and the EHRC and should be co-produced with disabled people and disabled people’s organisations. Additionally, enforcement mechanisms need to be significantly improved, with clear action plans, timelines, and penalties for non-compliance. Crucially, all of the organisations listed must be adequately funded and resourced, restoring their levels of funding to pre-austerity levels. Underfunded watchdogs are unable to hold employers accountable, which perpetuates poor practices and unchecked breaches of the law. With proper support and collaboration, these institutions can help to drive systemic change and make working environments genuinely inclusive.
17. What should be the future delivery model for the future of Access to Work?
We support the reforms to AtW outlined in the Disability Employment Charter which proposes that the government should:
- Remove – the AtW support cap
- Ensure application/renewal processes are efficient, personalised, and flexible
- Entitle disabled jobseekers to ‘in principle’ indicative awards
- Facilitate passporting of awards between organisations and from Disabled Student’s Allowance to AtW
- Increase awareness of AtW support
Alongside these changes, we would like to see certain exclusions removed such as the provision of ADHD coaching. People with ADHD should not be denied access to tailored support they need to succeed in order to succeed at work. The government should embrace a needs based approach so that provision is tailored to help each individual do their job effectively. The government should publish clear and accessible data on application processing times, approval rates, case backlogs and processing times for reconsiderations, to ensure transparency and greater public accountability. Ultimately, we believe that any new future delivery model should be co-produced and co-designed with disabled people and disabled people’s organisations.