National Disability Strategy

Disabled people and their representative organisations told us they have had little to no influence over the National Disability Strategy. The result is a disability strategy in name only: a list consisting mainly of pre-existing departmental actions with minimal strategic thinking behind how those actions interact. Only a strategy which integrates different policy areas—such as education, health, social care, employment and transport—will have a truly transformational effect on the lives of disabled people. (Paragraph 7) A longer-term approach

The Government should develop the National Disability Strategy beyond the short- term actions already in progress. To support this approach, it should work with disabled people to develop a ten-year strategy with an action plan for the first five years outlining clear targets and timescales for delivery. The Disability Unit should have the final say on all disability policy sitting in or originating from other Government Departments to ensure that the whole of Government works towards the same long- term strategic objectives. It should also have the power to challenge relevant Ministers. (Paragraph 13) Engagement with disabled people

The Government claimed to have carried out “the biggest listening exercise with disabled people in recent history” to inform the National Disability Strategy. We disagree. Rather than being listened to, many disabled people and their representative organisations felt excluded from the engagement process. The Government then chose to ignore their concerns, even after the possibility of legal action became likely, further disempowering its primary stakeholder group.

Disabled people and groups continue to feel excluded from having meaningful input into policies directly affecting them. This suggests the Government has not learnt lessons from the concerns raised over the development of the National Disability Strategy and that its efforts to engage are perceived to be superficial. The Government needs to improve its engagement with disabled groups, to listen to and act on what disabled people want, if its policies on improving their lives are to be effective.

The Government should immediately establish a national advisory group bringing together the DPO Forum England and the chairs of Regional Stakeholder Networks. The advisory group’s remit should include reviewing all government policy proposals targeted towards people with disabilities; advising ministers on issues facing disabled people; and working closely with the Disability Unit and the Minister for Disabled People, Health and Work on the further development, implementation and evaluation of the National Disability Strategy. (Paragraph 28) 20 The National Disability Strategy Evidence

The Disability Unit, in its response to this Report, should provide specific details on the steps it is taking to improve the evidence base on disability, including on disabled people’s lived experiences and the intersection with other protected characteristics. (Paragraph 32) Progress on remaining actions

The act of appealing the High Court’s judgment on the lawfulness of the National Disability Strategy created many months of uncertainty and frustration for disabled people and their representative organisations. It was unclear why the Government chose to pause 14 policies in the strategy while allowing a hundred others to continue. Failure to update disabled people on those actions that remained ongoing only served to exacerbate confusion and anxiety. The Minister for Disabled People, Health and Work—who is charged with oversight of implementing the strategy— should have had a system in place to monitor the actions still in progress and to update disabled people’s organisations and other relevant stakeholders accordingly. (Paragraph 38) Updating Parliament

The Minister for Disabled People, Health and Work should immediately update Parliament and disability stakeholders with specific timescales for delivery on all outstanding actions in the National Disability Strategy. (Paragraph 39) Convention on the Rights of Persons with Disabilities

That the Government failed to engage with the CRPD process earlier this year is disrespectful to the UN Committee and disabled people. It sends the wrong message, both nationally and internationally, about the UK’s commitment to upholding the rights of persons with disabilities. The Government, in response to this report, should set out: a) its reasons for failing to attend the August 2023 meeting with the UN Committee; b) Why it has not yet adequately addressed the UN Committee’s 2016 recommendations, the steps it is taking to progress that work and by when those recommendations will be met; and c) The specific steps it is taking to ensure that the whole of Government understands and follows the principles of the CRPD in policymaking. (Paragraph 43)

The National Disability Strategy is a positive step towards ensuring equality for disabled people. The Government now has an opportunity to put it fully into action. However, it needs to listen to the concerns that disabled people and their The National Disability Strategy 21 representative organisations had with the strategy and work closely with them to develop it into a long-term plan for change over which they have ownership.

The findings from our inquiry are split into three parts. This report looked at the extent to which disabled people had the opportunity to influence the National Disability Strategy. It focused on the Government’s engagement with stakeholders on disability policymaking. A further two reports will separately examine the inequalities that people with learning disabilities and autism face and disabled people’s access to products and services. (Paragraph 45) 22 The National Disability Strategy

The Disability Action Plan calls on the Disability Unit to publish research into the accessibility of private sector products and services in spring 2024 and to improve its understanding of the barriers disabled consumers face. It is right that policy options should be evidence-based However, despite the hold ups owing to legal proceedings, it is unacceptable that three years after the publication of the National Disability Strategy, rather than seeing tangible improvements in their lives, disabled consumers are instead left with further delay while waiting for the Government to undertake research, the need for which has long been recognised.

Not all businesses are considering the needs of disabled consumers when bringing products and services to the market. Where accessibility is considered, it is often done so retrospectively, as something to be bolted on to an existing design. Products and services should be inclusive by default. By not embracing inclusive design, businesses risk missing out on the spending power of disabled consumers and restricting the options available to them.

The Government should task the Disability and Access Ambassadors with engaging with businesses on inclusive design, to seek out and share best practice and to identify the barriers to making products and services in their sectors accessible to disabled people. The Government should then work with each sector to discuss relevant interventions and develop guidance on best practice.

Disabled people face additional costs in their daily lives. These costs are exacerbated by restrictions on their choice as consumers. We support the Government’s commitment in the National Disability Strategy to establish an Extra Costs Taskforce to better understand the extra costs faced by disabled people, including how this breaks down for different impairments. The Government originally planned to set up the taskforce by summer 2022. We recommend that the Government establish an Extra Costs Taskforce as a priority and by no later than summer 2024.

Disabled people should not have to look for alternatives or settle for less when using online shopping and services. Despite the untapped potential of the purple pound, market forces have failed to drive the urgent improvements that are necessary.

Given that disabled people increasingly need access to online services, information, and social networks, it is imperative that the Government acts on what it has described as the “persistently poor accessibility of private sector websites” without further delay. As a priority, private sector websites and applications which provide essential products and services should be subject to the same regulations as the public sector. Concurrently, Ministers should work with businesses, the Disability and Access Ambassadors and Disabled People’s Organisations (DPOs) to lay the ground for legislative action across the other parts of the private sector. The Government should provide an update on its progress on this recommendation within six months of the publication of this report. (Paragraph 28) 16 Accessibility of products and services to disabled people

Several banks and financial providers have innovated to make their services accessible to blind and partially sighted customers, such as issuing debit and credit cards with tactile indicators. However, this is not standard practice across the banking sector as providers continue to phase out embossed cards. We are also concerned that not all banks properly consider the needs of disabled people in the provision of ATMs.

The Financial Conduct Authority should work with the retail banking sector and organisations such as the RNIB to ensure all banks embrace inclusive design from the outset when innovating or phasing out existing services. We recommend that all banks: • roll out flat bank cards that are accessible to disabled people, and continue to issue embossed cards to customers who request them; • in addition to tactile indicators, ensure that all flat bank cards have a clear visual design, including colour, good contrast and large font size; and • where ATMs are provided, ensure they have been user tested with disabled people, installed in locations accessible to all and are regularly checked to guarantee that accessible features are in working order.

The Department for Environment, Food and Rural Affairs should review its food packaging guidance in light of new technological approaches being developed and ensure a minimum accessibility requirement on food packaging’s essential nutrition, health and pricing information. (Paragraph 37) Accessibility of products and services to disabled people 17

Health inequalities continue to be significant among people with learning disabilities and autism, including an unacceptable level of premature and avoidable deaths compared to the general population. Although some measures are now in place to monitor mortality, such as the annual Learning Disability and Mortality Review (LeDeR), and mandatory training on learning disability and autism, it is clear that more effort is required to improve health outcomes. Significant progress has been made in rolling out part one of the Oliver McGowan Mandatory Training on Learning Disability and Autism but the number of staff who have completed part two is low and availability is constrained while training capacity increases.

The Government should set out clear targets for the rollout of part two of the Oliver McGowan Mandatory Training on Learning Disability and Autism to help increase take up. The training should include elements tailored to specific health settings.

We welcome the commitment to train and recruit more learning disability nurses to help address some of the shortfall within the profession. Alongside that commitment the Government should support more learning disability nurses to go into senior leadership roles within hospital and community health services to help drive the necessary improvements to health outcomes for people with a learning disability.

The learning disability register is vital for people with a learning disability to receive important, life-saving annual health checks and reasonable adjustments. Yet around 75% of people with a learning disability are not registered. We heard from people who struggled to convince their GP to put them on the register and only achieved success once the media and politicians were involved. They should not have to reach that point, and not everyone will feel empowered to argue their case or have access to such advocacy to assist them. The system has to work better to ensure all people with a learning disability have access to good healthcare.

As an immediate priority, the Department for Health and Social Care and NHS England should work with national and local learning disability organisations and charities and the Royal College of General Practitioners to investigate why eligible people are not on the learning disability register and take appropriate action to increase registration. That work should include an assessment of the reasons why eligible people who have applied to be on the register have been denied access to it and a review of the existing guidance for GPs to ensure it captures all those who are eligible for registration. We also recommend that, by the end of 2024: • The Government should develop and launch an awareness raising campaign to encourage people to ask their GP to be put on the learning disability register; the campaign should be appropriately tailored to deliver increased registration among underrepresented communities; Inequalities in healthcare and employment for people with a learning disability and autistic people 35 • All GPs should ensure staff are using existing guidance on registration correctly to ensure eligible people are not being denied access to the register before even seeing a GP.

Too many people are waiting far too long to get their autism assessment and the backlog is getting worse. It is clear that current efforts to address the waiting list backlog are inadequate and that the additional funding that has been allocated is far short of what is required. The Government needs to radically increase the funding allocated to reducing waiting times for an autism assessment.

People with autism who may find it difficult to advocate for themselves can struggle to navigate the diagnosis process. The Government should work with NHS Trusts to ensure that information about the autism assessment process is accessible and available to everyone going through it, from pre- to post-diagnosis.

Women and girls with autism struggle to get diagnosed. Understanding of how autism presents in women and girls must be improved so that they can receive the support they need before they reach crisis and to prevent misdiagnosis and inappropriate care. The Government acknowledged this need in the National Disability Strategy but has made no progress in delivering the promised autism public understanding initiative. The Department for Health and Social Care should develop and trial an initiative aimed at improving public understanding of autism in women and girls by the end of 2024. In the meantime, the Government should set out what steps it is taking to improve the autism diagnosis process for women and girls.

The Government has fallen short on its commitment to halve the number of people with a learning disability and autistic people inappropriately detained in mental health hospitals. Promises to bring forward a new Mental Health Bill to help address this concern have gone unmet. Meanwhile, the number of autistic people in mental health settings and exposed to the harm that those settings can present is increasing.

The Government must make more progress in reducing the number of people with learning disabilities and/or autism detained in mental health settings. To achieve this the Government needs to learn from previous failings and increase support for community-based alternatives to detention and do more to stop people reaching crisis in the first instance.

In response to this report, the Government should set out: • The reasons why the number of autistic people detained in mental health hospitals has increased; and how it plans to reduce that number, and by when. • The steps it will take to improve access to and availability of community-based alternatives to inpatient settings, including the additional resources it plans to allocate to support this; and • Its progress on discharging people with a learning disability and autistic people inappropriately detained in mental health hospitals, broken down by Integrated Care Board. (Paragraph 51) 36 Inequalities in healthcare and employment for people with a learning disability and autistic people

People with a learning disability and autistic people, and the people who care for them, are the real experts when it comes to their health and care needs. However, aside from the occasional opportunity to feed into consultations, their voices are often missing when it comes to decision making at both a local and national level. Their lived experience should be better reflected throughout efforts to reduce the health inequalities discussed in this report.

The Government should reestablish a national board with a focus on improving health inequalities for people with a learning disability and autistic people across all health and social care services. That board should include, and be led by, people with a learning disability and autistic people, people with parental and caring experience and health and social care professionals. Ministers should grant the board the responsibility and accountability necessary to drive change in health outcomes.

People with a learning disability and autistic people can and want to work and thrive when they get the opportunities to do so. However, they face the widest employment gap of all people with disabilities and find it difficult to get their foot in the door. The Government should: • publish a new disability employment goal based on relative measures and set out how it plans to achieve it; that goal should include a specific target for people with a learning disability and autistic people; • ensure that work to improve Disability Confident and Access to Work includes reviewing the extent to which those policies are helping employers to recruit and support people with a learning disability and autistic people; • simplify the Access to Work scheme for people with a learning disability and autistic people and tackle the delays in processing applications to that scheme; • extend the Work and Health programme for a further 12 months; • exempt people with a learning disability and autistic people who do not have an Education, Health and Care Plan from the Maths and English skills requirement for apprenticeships; • implement the recommendations of its Review of Autism Employment including, as a priority, the appointment of a task group to be chaired by someone independent of government who represents autistic people and their needs; • roll out the autism accreditation scheme in all Jobcentres; and • ensure all Jobcentre work coaches are trained in learning disability so they can effectively refer people to suitable employment support programmes. (Paragraph 69) Inequalities in healthcare and employment for people with a learning disability and autistic people 37