Treatment of autistic people and individuals with learning disabilities

Autistic people and people with learning disabilities have the right to live independent, free and fulfilled lives in the community and it is an unacceptable violation of their human rights to deny them the chance to do so. It is also more expensive to detain autistic people and people with learning disabilities in inpatient settings and this takes up resources that are not then available for more humane community care. We are therefore deeply concerned that community support and provision for autistic people and people with learning disabilities, and financial investment in those services, is significantly below the level required to meet the needs of those individuals and to provide adequate support for them in the community. Fixing this must be a greater priority for both the Department of Health & Social Care and NHS England & Improvement.

We recommend that the Department of Health & Social Care provides us with a complete assessment of the cost of providing community support for all autistic people and people with learning disabilities currently in inpatient units. Alongside this, an assessment should also be made of the cost of providing community support for all autistic people and people with learning disabilities funded by both the NHS and local authorities. Once the costs of moving care and support to the community for these individuals currently detained in inpatient units are identified, we expect the Government to provide investment which matches these costs, including initial funding for double running if needed. This may require financial transfers from the NHS to local authorities in the short term, to ensure continuity of support. We expect this information by the end of 2021 and the new system to be up and running by the end of the 2022–2023 financial year.

We also recommend that the Department then needs to redesign the financial incentives in the healthcare system so that local authorities do not seek to ‘offload’ autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities. The Department must instead offer a credible alternative and provide additional support so that autistic people and people with learning disabilities can live independent and fulfilled lives in the community.

Since the Winterbourne View scandal, over 10 years ago, successive governments have committed to reducing the number of autistic people and people with learning disabilities in inpatient settings and prioritising community support for these individuals. However, missed and delayed policy targets suggest a more radical approach to unlocking funding for community provision is urgently needed. Too often autistic people and people with learning disabilities are assessed as needing to stay in an Assessment and Treatment Unit (ATU) not for temporary assessment or treatment but simply because appropriate community provision is not available, as evidenced by the shocking six year average length of stay.

While we welcome the vision set out by Helen Whately MP (Minister of State, Department of Health & Social Care), we believe this is a matter of delivery and The treatment of autistic people and people with learning disabilities 39 not a matter for further review. At present, the work and output of The Building the Right Delivery Support Group is unclear and risks repeating the previous mistake of focusing on a “voluntary” approach to supporting autistic people and people with learning disabilities rather than addressing the fundamental flaws in funding flows that prevent community provision being adequately provided. The Group does not appear to have a clear plan for improving the practical support autistic people and people with learning disabilities receive when living in the community in order to avoid future admissions or readmissions to inpatient units.

The Trieste model of care—characterised by simplified and quicker admissions to and discharges from inpatient facilities; limited number of individuals in inpatient facilities for lengthy durations; and emphasis on well-resourced community support—presents a clear and better alternative to supporting autistic people and people with learning disabilities than is currently in place in England. Crucially, the Trieste model demonstrates that, when legislated for and well-resourced, autistic people and people with learning disabilities can be effectively supported in the community and without unnecessary and lengthy stays in inpatient facilities.

We recommend that the Trieste model of care is implemented for autistic people and people with learning disabilities by the Department of Health & Social Care and NHS England & Improvement. All new long-term admissions of such people to institutions should be banned except for forensic cases. For cases where there is a severe co- morbidity any admission longer than three months should be subject to the safeguard as set out in the next paragraph.

In pursuing that policy, we recommend that by the end of 2021 the Department and NHS England & Improvement: i) introduce weekly formal reviews of the suitability of admission for all autistic people and people with learning disabilities who have been kept in inpatient facilities for three months or more; and such reviews should be used to determine whether it is in individuals’ interest to remain in such facilities. Furthermore, with the agreement of individuals’ families, these reviews could take-place on a monthly-basis; ii) ensure that those reviews are conducted by experienced clinicians who have no financial or personal connection including with working the inpatient facility concerned so as to guarantee their independence; iii) where the reason for a long-term admission (greater than three months) is due to a lack of appropriate community support and provision, the NHS should be required to find and set up community provision within eight weeks using the funding from the inpatient facility. The Mental Health Act 1983 should be amended to include automatic compensation for the breach of human rights involved for individuals for whom this is not delivered; and iv) proceed with removing the definition of autism as a disorder in the forthcoming reforms to mental health legislation in line with the commitments provided by the previous Secretary of State. (Para 56) 40 The treatment of autistic people and people with learning disabilities

Furthermore, we recommend that autistic people and people with learning disabilities should never be admitted to an inpatient facilities that has received an “inadequate” rating from the Care Quality Commission (CQC). The Department for Health & Social Care must bring forward measures to ensure that service commissioners can no longer buy services from settings that have been rated “inadequate” by the CQC.

We welcome the Government’s announcement that it will bring into force the Mental Health Units (Use of Force) Act 2018 in November 2021. This will go some way to reducing the use of restricted practices in inpatient facilities. However, we remain concerned that the use of restrictive practices remains commonplace in many inpatient facilities and therefore still presents a long-term risk to autistic people and people with learning disabilities. We recommend that in addition to the requirement of the Mental Health Units (Use of Force Act) two further reforms are introduced: i) use of restraint on individuals in inpatient facilities is published twice every calendar year; and ii) all providers are required to meet with both families and commissioners within a month of each incidence of restraint, whether chemical or physical, to explain why it happened and what measures are being taken to prevent a reoccurrence.

Inpatient facilities do not consistently meet the needs of autistic people and people with learning disabilities and too often this is because of factors such as the unnecessary use of restrictive practices; inpatient facilities being unable to accommodate individuals’ needs to avoid sensory overload; and the distance inpatient facilities are from individuals’ homes.

We recommend that, in addition to the implementation of the Mental Health Units (Use of Force Act) (i.e. ‘Seni’s Law’), all Assessment and Treatment Units (ATUs) are closed within two years and replaced with person-centred services that are: i) designed for easy discharge as well as easy admission; ii) physically designed and maintained to meet the needs of autistic people and people with learning disabilities; iii) located close to the homes of autistic people and people with learning disabilities; and iv) only admits autistic people and people with learning disabilities for short periods of time.

We have significant concerns about the quality of training and support provided to staff working in inpatient facilities and the negative consequences this can have on the treatment of autistic people and people with learning disabilities in inpatient facilities. While we welcome the pilot of the ‘Oliver McGowan’ training, it is clear that, in some cases, there is a lack of understanding amongst staff working in The treatment of autistic people and people with learning disabilities 41 inpatient settings that autistic people and people with learning disabilities do not need to be “cured” and instead need to be consistently put at the centre of their care. Ultimately, a system based on incarceration, restraint and seclusion will create an environment which dehumanises both staff and inpatients. But, if in limited circumstances, autistic people and people with learning disabilities are to be held as inpatients, it is essential for staff to be properly trained so that autistic people and people with learning disabilities receive adequate support from people who understand their condition.

We recommend that staff involved in the treatment of autistic people and people with disabilities in inpatient settings receive training in care planning which has a clear and unhindered focus on: i) understanding that autistic people and people with learning disabilities have non-treatable conditions and therefore should not be assessed as having treatable or preventable conditions; ii) putting autistic people and people with learning disabilities and their families at the heart of their care and treatment planning; iii) reducing and, where possible, eliminating the use of physical or chemical restraint, and seclusion; and iv) ensuring that all Integrated Care Systems implement such high-quality training and care planning for all autistic people and people with learning disabilities and that all staff receive this training by April 2023.

We conclude that the benefits of early diagnosis for conditions like autism are well- understood and late diagnosis presents a particular risk that autistic people will end up with mental illnesses such as anxiety and/or depression.

We recommend that the Government analyses the speed at which autism is diagnosed especially in children and young people, and puts in place a strategy to increase early diagnosis with measurable outcomes by the end of the financial year 2021–22.

The physical health and wellbeing of autistic people and people with learning disabilities requires greater prioritisation. We believe that the creation of an Intellectual Disability Physician to co-ordinate care in line with the model established in the Netherlands should be fully explored by the Department and NHS England & Improvement; and that this model would be a positive approach to addressing key problems facing autistic people and people with learning disabilities.

We recommend that the Department and NHS England & Improvement undertake an assessment of the merits of establishing the Intellectual Disability Physician as a new professional discipline within the NHS with the objective of reducing admissions 42 The treatment of autistic people and people with learning disabilities and the length of hospital stays for people with intellectual disabilities; as well as improving the quality of care autistic people and people with learning disabilities receive. We expect an update on this matter by the end of 2021.

In recent years there have been too many incidences of autistic people and people with learning disabilities dying in inpatient settings. Families and friends have too often had to go to extreme and difficult lengths to have independent reviews into such deaths. Of even greater concern is that in some cases, the poor treatment of autistic people and people with learning disabilities has led to people dying unnecessarily in hospital. The evidence we heard presented a compelling case for making mandatory, subject to family consent, an independent review of every autistic person and person with a learning disability who dies in inpatient settings or community settings.

We therefore recommend that the Government and NHS England & Improvement bring forward the necessary financial and workforce resources required to mandate the independent review of the deaths of all autistic people and people with learning disabilities in inpatient and community settings, and ensure there is a structured way to make sure any learning that emerges is disseminated across the system with clear actions following.