Inequalities in healthcare and employment for people with a learning disability and autistic people – Report Summary

Summary

Approximately 1.3 million people in England have a learning disability, 29% of whom are diagnosed as autistic. People with a learning disability and autistic people face significant health inequalities, including an unacceptable level of premature and avoidable deaths compared to the general population. While there have been some improvements in recent years, including the introduction of mandatory learning disability and autism training for all healthcare staff, overall care and outcomes too often still fall below acceptable standards.

People with lived experience of a learning disability told us of the challenges they faced in getting the healthcare support they needed. People with a learning disability can ask to go on the learning disability register, which entitles them to receive reasonable adjustments, such as support with making decisions and, vitally, access to an annual health check. Yet around 75% of people with a learning disability are not registered, and many struggle to convince their GP and practice staff to add them to the register. The Government needs to work with stakeholders to investigate why eligible people are not on the learning disability register and take appropriate action to increase registration, including an awareness raising campaign.

Learning disability nurses can help people with a learning disability to access good healthcare but there is a shortage of these nurses in both primary and secondary care. The Government has committed to train and recruit more disability nurses. Alongside that commitment the Government should support them 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 Government should also 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.

Reducing the current waiting time for an autism diagnosis is crucial to tackling health inequalities for autistic people, however the backlog is getting worse. The funding committed to date to support these assessments has been inadequate and needs to be radically increased. Understanding of how autism presents in women and girls needs to 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.

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. It needs to learn from previous lessons and increase support for community-based alternatives to detention and do more to stop people reaching crisis in the first instance.

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.

Several Government measures are in place to help reduce the disability employment gap, but some schemes are difficult to access and require improvement. The Government should 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. The Access to Work scheme should be made easier to access for people with learning disabilities and delays in processing applications need to be tackled.

People with a learning disability and autistic people who do not have an Education, Health and Care Plan should be exempted from the Maths and English skills requirement for apprenticeships. The Work and Health programme, due to end later this year, should be extended for a further 12 months and the recommendations of the Government’s Review of Autism Employment must be implemented, 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. To underpin this work 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.