DPO Forum response to Health & Disability Green Paper

Shaping future support: the health and disability green paper

Consultation response from the DPO Forum England

September 2021

About us

The DPO Forum England brings together disabled people’s organisations (DPO’s) across England to work collectively to act as the voice of disabled people. The DPO forum offers a unique and valuable perspective, as the members are all DPO’s that are majority run and controlled by and for disabled people. We are truly able to speak as a voice of disabled people because we represent disabled people.

Our current membership includes:-

  • Alliance for Inclusive Education
  • Breakthrough UK
  • Bristol Reclaiming Independent Living
  • Choices and Rights (Hull & East Riding)
  • Chronic Illness Inclusion
  • Disability Positive
  • Disability Rights UK
  • Disability Sheffield
  • Disability Stockport
  • Disabled People Against Cuts
  • Equal Lives
  • Equality Together
  • Greater Manchester Coalition of Disabled People
  • Inclusion London
  • National Survivor User Network
  • People First
  • Reclaiming Our Futures Alliance 
  • Shaping Our Lives
  • Sisters of Frida
  • Spectrum CIL
  • WECIL (West of England Centre for Inclusive Living)

Note: Within this response we use the words ‘disabled people’, ‘we’, ‘us’ and ‘our’ to mean disabled people facing disabling societal barriers due to their impairments or conditions and this includes physical impairments, mental ill health/mental distress, hearing including deaf and Deaf with BSL as first language, or visual impairments, learning disability/difficulty, neurodiverse people, and those with chronic illness or fatigue.

Response overview

We have set out our summary response and have also made comments against some of the key themes proposed in the consultation.

Shaping future support: the health and disability green paper is not a reality-based document. This is a fundamental problem because you cannot plan successful policy without first knowing the reality of current policy failure. The reality is that successive welfare reforms from successive administrations of differing parties, sharing a Westminster consensus, has caused the stigmatisation and demonisation of disabled people and the creation of a structure that has been described by Dr David Webster as a ‘secret penal system’.

The first thing any realistic green paper needs to do is acknowledge the DWP and its contractors have gone badly wrong and must apologise to disabled people for subjecting them to a hostile environment causing many deaths, large scale poverty, exclusion, and human rights abuses that have been examined in detail and condemned by the United Nations.

The main document is written at times in complex inaccessible government language. With these issues in mind, we strongly recommend the use of plain English so that the document is easy to refer to for people with differing levels of literacy, easy to understand and easy to explain.

A major concern is the Green Paper’s repeated references to “affordability” and the rising spending on disability benefits, which, the DWP says “suggests there is more we can do to enable independent living and employment”. there are recurring suggestions that these concerns with limiting spending are driving longer term plans for reform. For example, the Paper mentions “reviewing how money is spent”, and how “checks are made on disabled people’s needs” with a view to ensuring the “sustainability” of the system.

This framework of austerity, carried forward from previous reforms, is entirely at odds with recent evidence collected by the government’s own Disability Unit. The purpose of this survey was to inform the government’s National Disability Strategy, the Health and Disability Green paper is a key plank of delivering this strategy. We would therefore expect the Green Paper to address issues raised by the Disability Unit survey.

The Disability Unit’s Survey of over 16,000 people demonstrates the inadequacy of current benefit levels. The perception that disability benefits are woefully inadequate is shared almost equally by the general public as well as by disabled people themselves:

Just 4% of disabled people, 4% of carers, and 6% of general public respondents ‘agree’ or ‘strongly agree’ that disabled people have sufficient financial support to meet their needs.

Only 5% of disabled people, 6% of carers, and 9% of general public respondents ‘agree’ or ‘strongly agree’ that in general, the government provides a good level of support to disabled people.

In addition, better financial support was among the top three priorities raised by survey respondents: “Disabled people and carers also reported that increasing benefit payments to reflect a living wage (including adjustments to account for additional costs of disability) would improve their lives”.

These findings on the inadequacy of benefit levels are in line with the report on reforming disability benefits after Covid19 by Matthew Oakley for the Social Market Foundation, and several other thinktanks including The Commission on Social Security led by Experts by Experience.

It is shocking and unacceptable that the Green Paper completely fails to address the inadequacy of the financial support available to disabled people who face multiple and complex barriers to employment. The inadequacy of benefit levels was acknowledged by the Chancellor in 2020 through the £20 a week uplift to Universal Credit. But disabled people on legacy benefits were discriminated against as this vital uplift was denied to us.

Disabled people have been the hardest hit from austerity policies from 2010 onwards by a variety of measures. The Green Paper should have been the opportunity for levelling up by addressing income poverty among disabled people. Instead, it hints at more retrenchment to come.

In a section titled “Why Further Change is Needed”, the increasing numbers of claimants who are assessed as having limited capability for work and work-related activity under Universal credit and ESA is highlighted.

The Green Paper claims that spending on PIP and ESA (and its earlier and later equivalent benefits) has risen in real terms from about £8 billion in 1980/1981 to £31 billion in 2020/2021, and is forecast to reach £40 billion within five years.

Yet from April 2017, new ESA and UC claimants who are placed in the work related activity group have not received the additional limited capability for work component –  then worth £29.05 a week. The justification for this cut was that it would incentivise Disabled people to gain employment. The fact that it is not referred to, means that the DWP has no evidence that it has had any affect other than to increase Disabled people’s poverty.

The Pandemic Poverty report by the Disability Benefits Consortium highlighted that two thirds of Disabled claimants have had to go without essential items at some point during the pandemic; and almost half of Disabled claimants reported being unable to meet financial commitments such as rent and household bills.

Although (except for years in which they have been frozen) benefits are normally uprated annually according to an index of inflation, the initial amounts to which that uprating is applied have never been assessed for adequacy.

Many of the disabled people we work with report confusion about terms used. We therefore think it is important to be clear about what the terms you use mean on a practical level such as:

  • Define what is meant by advocacy: Many disabled people do not have a reliable and trustworthy circle of support needed to help them to say what they want, but the consultation seems to concentrate and takes the default ableist position on representation which erases many experiences. It is important to include disabled people who may not want to rely on friends or family, or they may not have the right support to respond to the process of the consultation.
  • The consultation questionnaire which is likely to be used by the vast majority of respondents, is complex, lengthy and not fit-for-purpose; it suggests very specific questions which does not give disabled people a meaningful opportunity to respond about what is really important to us.
  • Whilst we are pleased to see availability of accessible formats, such as an easy read version; this somewhat misconstrues the context which, therefore, does not give disabled people a meaningful opportunity to respond about what is really important to us.

We would also recommend it is made clear who the document is for. If it is intended for people who have lived experience of accessing health and disability related benefits, it would be preferable to refer to ‘you’, rather than ‘disabled people’, which may encourage more disabled people to engage with the consultation process.

We are concerned by the level of contradiction within the paper, for example: on one hand, the paper claims that universal credit is so successful at helping disabled people into employment, and yet suggests the need to design a different benefit system.

We are also disappointed to note the lack of meaningful or evidenced engagement with disabled people and Disabled Peoples Organisations (DPO) which is led by us and for us, there is no reference in Annex A of the scope, or level of attendance at the engagement events. Therefore, DWP, government must better recognise the distinction between large nationally based disability charities and DPO’s. Government is committed to following the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), a part of which is about engaging with disabled people and our representative organisations. Government has too often turned to the national charities as ‘the voice’ of disabled people, when in reality these organisations may speak on behalf of disabled people, but they cannot represent us.

Responses to the key themes proposed in this consultation

1: Providing the Right Support

Based on listening to the disabled people we work with; we would disagree that most people find the forms easy to complete. The forms create much stress and difficulties for millions of disabled people. Simpler forms are necessary to enable disabled people to engage with the process. Also the forms should adhere to what the law requires and not route people into answers favourable to DWP imperatives. The forms are pages and pages long, asking for endless information about our medical conditions how it affects us. It is very difficult to answer the questions with any degree of articulation, without feeling completely overwhelmed, degraded and deflated.

Access to independent advocacy is imperative. However, it is important that this is not delivered by the DWP but independent of the government. This would be best placed within local DPO’s whose practices are centred on using the social model of disability, centred on lived experience, UNCRPD and intersectionality to tackle ableism in our society. DPO’s workforce are people with lived experience of the process and are a trusted source of information, advice, and support; helping people to say what matters to us. Funding DPO’s to deliver advocacy to support disabled people to navigate the benefits system would support thousands of us per year and improve outcomes and increase employment opportunities for disabled people.

In considering accessibility, it is also important to consider experiences of mental ill health and/or distress and how these may be exacerbated by the setup of the benefits system including but not limited to claimant commitments, work capability assessments and sanctions.

The mobility aspect of the assessment is really critical because to many disabled people across the UK, it does not currently feel supportive but suspicious and degrading. For example, setting assessments up as far away from the front door as possible (usually more than 50 metres). It should be easier to arrange virtual meetings, or assessments at home to prevent unnecessary additional stress caused by arranging care/travel to attend ‘assessment’ centres, during an already anxious time.

There is also a clear lack of accessible public transport, where it is not possible to spontaneously arrange travel. It has to be planned well in advance to meet access requirements, particularly if travelling from one town to another, or from more rural settings. Ensuring that all public transport is accessible will be essential if the assessment process doesn’t adapt to meet the current limited accessible transport. 

The Motability Scheme is another crucial aspect of support for mobility needs; however, the green paper does not refer to the impact of change to the 20 metres rule, which has resulted in thousands of disabled people losing their Motability cars. We would suggest that access to Motability scheme is reviewed to ensure that it can support more disabled people and remove barriers to our mobility and independence.

In 2020, Motability said that around 102,000 DLA claimants have lost their Motability vehicles after PIP reassessment (which would have been due to the stricter 20 metre rule).

The 20 metre rule has to be removed and the 50 metre rule or a better more real world based criteria be introduced.

There are also very poor wheelchair services, where disabled people report severe delays, so people end up purchasing inappropriate aids, such as mobility scooters, many of which are disallowed from use on public transport due to chaotic licensing arrangements.

Whilst Access to Work has enabled many disabled people to enter and retain employment we recommend a review of the process which is inaccessible to some disabled people and can also take a long time from claim to receipt of funding which puts increased pressure and stress on the disabled person to carry out their role without the necessary equipment or support. The current process to obtain an in-work support worker is a barrier to many disabled people and many of the disabled people we work with have stated that they have forfeited this support as they cannot complete the process required to release the funding and therefore struggle or fall out of employment due to not having the support that they need. It is again unclear as to how the DWP Access to Work staff receive Disability Equality Training or the percentage of disabled staff who work within the department.

A review is recommended of the Disability Confident Scheme, currently there is no requirement for employers to make changes or improve their accessibility or progress from Committed to Leader status. The disabled people we support have stated that they do not have confidence in Disability Confident employers and they feel that the scheme is a tick box exercise and not a meaningful route to improved employment opportunities.

Current employment programmes place the barriers with the disabled people (CV writing, upskilling or reskilling) and not enough emphasis is placed on employers to be more inclusive or accessible. Funding DPO’s to support employers to become more inclusive, to be fully aware of their anticipatory duty under the Equality Act and to make reasonable adjustments is effective, unlike putting the burden on job seeking individuals.

2: Improving Employment Support

Whilst we support encouraging disabled people to ‘start, retain and succeed’ in employment, it is important that it is recognised that this will never be achieved to its full potential until the education system and public perception ends disability discrimination and stops shutting disabled people out of mainstream education and other related previsions are more inclusive of disabled people.

It is unclear how JCP staff receive Disability Equality training or the percentage of disabled staff working as Disability Employment Advisors and work coaches. Employment support would be best placed within local DPO’s whose workforce are people with lived experience of the process and are a trusted source of information, advice, and support.

Resource and funding DPO’s to deliver employment support to disabled people would support thousands of us per year, improve outcomes and increase employment opportunities for disabled people.

The DWP’s approach to its employment programmes is centralised, “one-size fits all” and not effective. Instead, increased funding should be given to local DPO’s to provide personalised support to thousands of us per year, improve outcomes and increase employment opportunities for Disabled people. Currently the commissioning system excludes place-based support from local DPO’s.

3: Improving our Current Services

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 Scottish approach outcomes and this Green paper are stark.

Among the several Scottish reforms are:

  • replacing DLA, PIP and AA with three new benefits that make decisions using a claimants account of their circumstances and existing supporting information.
  • for adults, significantly reducing the number of formal face-to-face, telephone or video assessments and with a formal assessment held when it is the only practicable way to make a decision.
  • basing entitlement to the new DLA Child benefit using the claimant’s account of their circumstances and existing supporting information and holding no face-to-face assessments being held.
  • the Scottish Short Term Assistance payment which provides those challenging benefit decisions with their previous level of support until a decision is reached on the appeal. This payment is not repaid regardless of appeal outcome.

All the above are welcome changes in Scotland.

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.

Disabled people should be able to record the assessment, in a format of our choosing, so that there is an accurate record, that can then be compared to the assessment report received. The assessment report should automatically the issued to claimants with the decision letter.

Contractors should follow the rules of the Equality Act and provide the necessary equipment, to record the sessions as a reasonable adjustment and this should be provided with the assessment outcome.

This would also help improve the accuracy of reports, as many disabled people report that the report they receive relates to another person, where it is obvious that the assessor has copied and pasted from another report that relates to another individual.

Mandatory reconsideration is simply a delay on access to justice for disabled people and should be discontinued. Legal aid should be restored, and tribunals should take place in more accessible formats of our choosing, and in safe, accessible venues that minimise mental distress caused by intimidating court buildings.

We do not support the continuous reassessment of disabled people who are unlikely to improve year on year in terms of how their impairment affects their day-to-day lives. In fact, disabled people we support, find the reassessment process pointless when nothing has changed. The system could be improved by using an approach centred on trust, where the benefit continues for longer periods, with the onus on the disabled person to notify of any changes in the meantime. At reassessment, this should be done by a simplified process to ask if anything has changed, since the last claim.

If an assessment or reassessment is required, the disabled person’s choice of format (home, telephone, assessment entre, video, paper) should be followed. Additional stress is often caused by having to arrange care/travel to attend assessment centres, during an already anxious time.

The process is unnecessarily highly complex and stressful which creates a barrier for disabled people.

Provision of psychological therapies within Job Centre settings is not helpful while sanctions and coercion are part of the system as they are currently.

4: Re-thinking Future Assessments to Support Better Outcomes

More and more unpaid carers are over pensionable age, which is not fair for them to lose Carers Allowance at this point in their life, therefore, the impact of this must be considered as part of future assessments to enable people to continue to claim Carers Allowance, regardless of their age.

There is no mention of housing, intersectionality and intersecting experiences which is a major barrier to independent living and standard of living as noted by the UNCRPD. We would therefore suggest that this is given further consideration, as the lack of accessible housing has a significant impact on disabled people.

With regards to the health impact record, so that disabled people can record the impact of their condition throughout their claim; whilst this sounds supportive in principle, it is important that there are clear parameters set out in this regard. Otherwise, this could feel like daily state surveillance in an attempt to reduce disabled people’s benefit entitlement, which would not improve the lack of trust disabled people already have for the DWP.

5: Exploring Ways to Improve the Design of the Benefits System

The re-design, implementation and development of a benefits systems should be in coproduction with DPO’s and disabled people to meet the commitment to the UNCRPD and create a simpler, fairer, humane system that recognises our lived experience and embraces our different intersectional identities; creating a benefits system that is centred on human rights models. There already exists a disabled people led Commission on Social Security (commissiononsocialsecurity.org) who have considerable work on designing an improved system.

We would also recommend that the DWP adopt a radically different attitude and culture towards disabled people. The DWP need much improved training, delivered by disabled people that is centred on rights base models, on the multiple societal barriers disabled people face, and interlocking oppressions upon our intersecting identities.

BSL users continually face a lack of interpreter provision or recognition of the extra costs they need to cover for this. Recognition of such different requirements is needed.

We have extra living costs as disabled people; therefore, a separate additional, non-means tested benefit is imperative to being able to live a truly independent and full life.

It also has to be recognised that the currently regime is highly distressing to many, has exacerbated and in some instances caused further mental distress with subsequent crises and fatalities. Reform must ensure the harmful practises and culture of the institutions administering benefits are changed to be supportive and constructive.

We are opposed to any notion of Personal Independence Payment (PIP) being merged under Universal Credit. This is unacceptable.

This would go against the sentiments of the UN CRPD to improve support and services for disabled people. This would mean the abolition of PIP as a separate benefit and it being means-tested. PIP is not means-tested, in recognition of the fact that disability related extra costs arise at any level of income. It is not contribution-based, in recognition of the fact that many Disabled people will not have had the opportunity to build up contribution records.

In addition, a single poor assessment of any such new benefit could a knock out all benefit support, leaving the Disabled claimant in serious financial trouble while the decision was being challenged.

In addition, we demand a removal of sanctions from the Social Security System and sufficient level of benefits to live a life well. The approach to conditionality and sanctions is counterproductive and disabled people have been disproportionately impacted by the current system. The Trussell Trust report that in 2008 -2009, there were 25,899 people receiving three days of emergency food, and in 2020-2021, there were 2,537,198 people receiving three days of emergency food. Disability Rights UK report that 62% of people who accessed food banks in 2020, were disabled people (which is three times the rate in the general working age population, which is 19%).

The design of the system should look at examples in France and Scotland.

  • France has a much better social security system, so even if one part of that system is less generous, other parts compensate for it, providing a better service for disabled people overall.
  • Scotland already has a better system, but this isn’t mentioned in the green paper. They have properly consulted with disabled people in Scotland, so there is learning that could improve the level of coproduction with disabled people in England for the design, implementation and delivery of a supportive benefit system that values disabled people as equal citizens.

Funding DPO’s to support the re-design of a benefit system, would achieve better outcomes for disabled people and meet the commitment to follow the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and engaging with disabled people and their representative organisations