Sixth Report - Inequalities in healthcare and employment for people with a learning disability and autistic people

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