Consultation outcome

Leonard Chesire response

Updated 23 March 2020

1. Introduction to Leonard Cheshire

1.1. Leonard Cheshire is a global organisation supporting disabled people in the UK and internationally to live, learn and work as independently as they choose. Led by people with experience of disability, we are at the heart of local life - providing opportunities, choice and support in communities around the globe. 

1.2. Leonard Cheshire is one of the UK’s largest voluntary sector providers of services for disabled people. We work in local communities to provide people with opportunity, choice and support. We have accommodation services – including supported living and registered care homes; and operate a number of different employment programmes for disabled people.

This includes the Department for Work and Pensions’ (DWP) Work and Health Programme and Specialist Employability Support, as well as our own innovative programmes such as our Change 100 internship scheme for disabled graduates.

1.3. Leonard Cheshire has contributed consistently to many written consultations to DWP – including most recently the ‘Health is Everyone’s Business’ consultation – as well as participating in stakeholder forums, and various working groups over the years. This consultation response is informed by our direct experience engaging with DWP, to ensure that their policy making is informed by the lived experiences of disabled people and protects the rights of disabled people across the UK.

2. Experience of Engaging with DWP

2.1. Meaningful engagement1 of people with disabilities is enshrined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is the only UN Convention to have been developed by the subjects of the treaty, based on the principle of ‘nothing about us, without us.’ This mantra has not only become the rallying call for the UNCRPD, but has been adopted by civil society and governments worldwide. In the UK for example, the Department for International Development have enshrined this principle in their Disability Inclusion Strategy.

2.2. Leonard Cheshire welcomes the government’s commitment to ensuring “equality is mainstreamed across Government”. In its response to the UN Committee of the Rights of Persons with Disabilities concluding observations, the government also stated that “all departments are responsible for consulting and engaging with disabled people and their organisations on policy issues affecting them.” However, in Leonard Cheshire’s experience, much more can be done by DWP, and the government as a whole, to engage directly with disabled people, their representative organisations, and Disabled People’s Organisations (DPOs), to ensure that government policy is informed by the lived experiences of disabled people.

2.3. Leonard Cheshire has engaged with DWP in a variety of ways. We respond directly to departmental consultations, such as the recent ‘Health is Everyone’s Business’ consultation, and the ‘Improving Lives’ Command Paper at the end of 2017. Leonard Cheshire is also an active participant in a number of DWP working groups and forums, including the PIP Stakeholder Forum and the Universal Credit Stakeholder Forum. This includes participating in forums based in London and in the devolved nations. We also are approached by DWP officials to give expert advice on programmes like Access to Work and Disability Confident, or to work collaboratively with others on projects like the potential information portal for employers. Finally, through our role as Co-Chair of the Disability Charities Consortium, Leonard Cheshire regularly engages with the Minister for Disabled People, and officials, including those at the Cabinet Office’s Disability Unit.

2.4. Leonard Cheshire is often invited to engage with DWP directly by officials, or in the case of bi-lateral meetings, we may approach officials directly instead. Many of the forums we attend involve listening to presentations from officials. There is not much opportunity for a meaningful dialogue on a specific topic, with no talking points or areas for discussion circulated in advance. It is not clear how contributions from stakeholders in the forums are captured, and there is often little feedback provided about how questions or concerns have been addressed. At times it can feel like DWP is engaging for engagement’s sake, rather than through a genuine desire to inform and update its policy work. Although our experience of engaging with DWP at these forums has been constructive, more can be done to improve the transparency of how DWP acts upon the feedback generated from these forums.

2.5. However, there are pockets of good practice. At the recent PIP Stakeholder Forum, officials presented how they had used the Forum’s suggestions to improve the PIP1 claim form. Participants were also asked to comment specifically on how to improve the PIP assessment process, with officials documenting feedback from the forum. Leonard Cheshire strongly recommends that DWP’s policy forums take a more consultative and collaborative approach in the future, so that the views of charities representing disabled people, DPOs, and disabled people can be used to meaningfully inform DWP’s policy work.

2.6. Leonard Cheshire also recommends that the DWP’s stakeholder forums are regularly held in locations outside of London. This used to be standard practice before 2018. Holding forums in the devolved nations enables a more nuanced policy discussion of the devolved policy landscape to take place. It also ensures that smaller local DPOs or civil society organisations can participate, as travel to London can be extremely costly. Holding forums in a variety of locations outside of Westminster will increase their accessibility, enable a more diverse and inclusive range of organisations to attend, and will increase the opportunities for disabled people’s voices to be heard.

2.7. In addition, more can be done to improve the accessibility of DWP’s engagement work. There have been improvements in terms of the physical accessibility of the venues DWP uses to host meetings. If requested in advance, some materials are provided in accessible formats prior to forum meetings. However, often at the meetings PowerPoint presentations are delivered by officials. These slides are not shared in advance. This resulted in a visually impaired person at the recent PIP Stakeholder forum not being able to engage fully with the presentation. Accessibility should not be an afterthought. Ensuring at all engagement activity is accessible for participants should be at the heart of DWP’s work. The onus should not be on disabled people to ask for adjustments. Adjustments should be made as part of business as usual activity.

2.8. In terms of consulting with disabled people directly, Leonard Cheshire believes in the rights-based approach advocated by the CRPD and in the principle of ‘nothing about us without us.’ Leonard Cheshire regularly receives the input of disabled people in its policy work, ensuring that disabled people’s lived experiences are shared directly with government. This includes when responding to consultations commissioned by DWP. DWP has not approached Leonard Cheshire to help to convene a focus group or arrange interviews with the disabled people we work with. We can offer access to our campaigners as well as individuals taking part in the employment programmes we operate. We see this as a missed opportunity for DWP to consult directly with the individuals who their policies affect. We urge DWP to review its approach to engaging with disabled people, particularly as part of its work on the forthcoming Disability and Health Green Paper. Disabled people should not only be consulted with but should be involved in directly co-designing and co-producing the DWP policies which impact their lives.

2.9. Leonard Cheshire has seen benefits from its engagement work with DWP. This is particularly the case from our bilateral engagement with DWP officials on Disability Confident and Access to Work. As a result of our engagement, we have seen improvements made to Disability Confident, with DWP now introducing voluntary reporting for level 3 employers. We are also supporting DWP to engage with employers and pilot some new approaches for the employers we work with to support disabled individuals claiming Access to Work. These examples demonstrate how DWP can work with its partners to deliver improvements to its programmes. However, although there are benefits of engaging bilaterally, as highlighted, DWP does not always show how it responds to feedback and new policy ideas featured in written consultation responses or through its stakeholder forums. A more transparent and consistent approach across its engagement methodology would ensure that there are genuine benefits for disabled people to engage meaningfully with DWP.

3. Engagement with other organisations outside of DWP

3.1. Leonard Cheshire engages with a number of public sector bodies and organisations external to government on issues affecting disabled people. In our experience, more can be done across the board to include disabled people in engagement activities, as well as to ensuring that engagement activities are meaningful and representative. However, we can cite examples of good practice.

3.2. Firstly, disabled people, DPOs, and representative organisations like Leonard Cheshire engaged with the National Audit Office (NAO) to inform its 2018 to 2019 inquiry ‘Supporting Disabled People to Work’ . The NAO formed an ‘expert panel’ consisting of DPOs, charities and academics to submit and review evidence to the inquiry.

Most importantly, there was the opportunity to suggest and review the NAO’s draft recommendations. This helped to increase the transparency of the inquiry and enabled expert panel members to understand how their evidence had shaped the outputs of the inquiry. The NAO also consulted with 40 organisations working with disabled people through focus groups with ERSA (Employment Related Services Association) and BASE (British Association of Supported Employment), as well as interviewing staff at Jobcentre Plus, Local Authorities and DWP. Unfortunately, the NAO did not directly consult with disabled people to find out their lived experiences of employment support.

The NAO communicated progress and tested their recommendations with partner organisations throughout, helping to generate credibility for the final report. The transparent approach to policy making, consistent communications, and consultation with a diversity of stakeholders are all areas which DWP could learn from to enhance its approach to engaging with disabled people.

3.3. Similarly, Leonard Cheshire has recently engaged with the Rail Delivery Group (RDG) as part of their legal obligation to make rail replacement travel fully accessible for disabled people. Although this work is ongoing, so it is too early to say whether this engagement has had an impact, the RDG has worked hard to ensure that DPOs and organisations representing disabled people have been included in the policy development progress. This has included the RDG conducting interviews with organisations to gain an understanding of the current issues affecting rail travel for disabled people; holding a workshop in an accessible venue to present initial policy solutions; holding follow up interviews to test assumptions; sharing the draft policy proposal for the Minister for Rail to enable organisations to input and critique the proposals. Although the final proposal submitted to the Minister has not yet been shared, the process the RDG followed was again transparent and collaborative and underpinned by good communications.

4. Conclusion and recommendations

4.1. Even though DWP has pockets of good practice in involving disabled people in changing the way it works, there is still a long way to go before the department upholds the principle of ‘nothing about us without us.’ Furthermore, there are also significant improvements DWP can make to ensure that its engagement with stakeholders is meaningful, impactful and transparent, and drives genuine changes to policy to improve the lives of disabled people in the UK. Although Leonard Cheshire has had a positive and constructive experience of engaging with DWP, and will continue to work with the department, we make the following recommendations to improve its work.

4.1 Recommendation 1

DWP should adopt a consistent and transparent approach to engaging with its stakeholders and commit to ensuring that all engagement is meaningful, with the genuine intent for it to inform DWP policy. A consistent methodology, informed by best practice, should be produced to advise civil servants on how to conduct meaningful engagement. This includes advising on how to engage with a diverse range of stakeholders; how to ensure engagement is accessible to disabled people; how to gain and act on stakeholder feedback; how to share draft policy proposals; and the importance of clear and consistent communication to stakeholders. This guidance should apply to both written consultations, as well as to face to face engagement activities like stakeholder forums, policy roundtables, workshops and focus groups.

4.2 Recommendation 2

DWP should embrace the principle of ‘nothing about us without us’ and include disabled people directly in its policy making process. Although DPOs and representative organisations like Leonard Cheshire share the experiences of the disabled people they work with, involving disabled people directly in co-designing and co-producing DWP policy will help future government policy to deliver genuine improvements to disabled people’s lives.

4.3 Recommendation 3

To increase the accessibility and inclusivity of its engagement work, DWP should regularly hold stakeholder forums outside of London. This not only ensures that local, smaller organisations like DPOs are able to attend and engage with DWP, but also ensures that regional or devolved contexts can inform DWP’s policy work.

4.4 Recommendation 4

Accessibility should not be an afterthought for DWP. The department should consult with disabled people to ensure its stakeholder engagement work, including presentations delivered in forums, is fully accessible as standard practice.

4.5 Recommendation 5

Feedback should be provided to individuals and organisations submitting written evidence to consultations or sharing evidence in DWP forums and roundtables. This would help to improve the transparency of DWP’s work and help organisations to see if and how they are making an impact.