Commissioning services for autistic people

The resources on this webpage have been assembled as part of a shared project between NDTi, Skills for Care and the National Autistic Society to create guidance for commissioners of services for autistic people. The project is funded by the Department of Health and Social Care.

Current resources

• The UK Government published its Autism strategy in 2021, along with an
• Implementation plan for 2021-22.
• Skills for Care published A framework for commissioning support for autistic people and their families in 2019. That Framework set out what kinds of support should be available.
• The Department of Health and Social Care published Commissioning Services for autistic people to guide commissioners on the process of commissioning these services
• NHS England published a research agenda in 2022.
• Skills for Care published a Prevalence Calculator in 2019 to help Commissioners work out how many autistic people were likely to be living in their area.

History

• Landmarks. Guidance on commissioning services for autistic people was provided by the Department of Health in 2006 and 2009. Following the influential I exist report by the NAS, a consultation, and a review by the National Audit Office, the Autism Act 2009 led to England’s first Adult Autism Strategy ‘Fulfilling and rewarding lives’ published in 2010. NAS published a brief commentary on progress in 2013. Following the scandal at Winterbourne View, the Bubb review generated recommendations about commissioning autism services. In April 2014, the Strategy was updated with the publication of ‘Think Autism’, which led to a consultation paper in March 2015 called ‘No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions.’ and then revised Statutory Guidance in March 2015. 2016 saw a House of Commons Briefing Paper and a Progress report. The Think Autism strategy was refreshed in 2018 followed by a consultation and then a new strategy in 2021, along with an implementation plan for 2021-22.
• Advice for Commissioners. In 2006 the NWTDT and NAS published advice on how to improve commissioning standards for services for autistic children and adults and NAS updated it with a series of leaflets in 2014. In 2014, NICE produced their version here and the LGA set out the principles they thought should underpin commissioning for autistic people. NHS England produced guidance in 2017 called Developing support and services for children and young people with a learning disability, autism or both. Meanwhile, SCIE produced guidance for commissioners of social care for adults with autism. The CQC set out its principles in 2017 and Skills for Care published A framework for commissioning support for autistic people and their families in 2019. That Framework addressed the question of what kinds of support should be available, while in 2021, the Department of Health and Social Care published Commissioning Services for autistic people to guide commissioners on the process of commissioning these services.
• Data collecting. IHAL ran a survey of autism commissioning in 2014. The Department of Health and Social Care required local authorities to complete a Self Assessment Framework (known as the SAF) each year from 2012 to 2015, as illustrated by these returns from Surrey. This letter devolved responsibility – and so some areas, such as Lincolnshire and Gloucestershire, continued with the annual audit for one or more years but most did not. DHSC asserted that a further national next Self-Assessment exercise would be undertaken in autumn 2018. but then abandoned the plan. The questions within each self-assessment were modified each year inhibiting year-on-year comparisons. The PSSRU published research on the views of commissioners in 2018.
• Rights, duties and the law. The law relating to autism is explained in easy-read terms here and an easy-read dictionary of words used when thinking about rights is here. Local authority obligations are here.

What could be provided?

All health and social care services provided for autistic people should meet the NICE Quality Standards. These standards address access to health and social care, and mention just three areas beyond the care system – social contact, quality of life and employment, so it is a weak definition of an inclusive life. In addition, the NHS has published Improvement Standards.

Specific needs can be identified that could be addressed by a deliberate response from services. Some general remarks about each of the potential services are made in the bullet points below. Click on Commissioners might buy for a catalogue of service responses that includes examples from around England of services that have actually been funded at one time or another in response to these issues.

• Mental health support. 70-80% of autistic people experience mental health problems and autistic people are disproportionately likely to commit suicide. Advice is available from the LGA on supporting autistic people who have mental health needs and the Green Light Toolkit helps mental health services review their service, and STOMP campaigns to stop the inappropriate use of psychiatric medication on autistic people. NAS has highlighted the increase in the number of autistic people in mental health hospitals here.
• Behaviour that challenges. In 2015, NHS England published service models and additional information for commissioners to meet the needs of autistic people who presented behaviour that challenges. In 2017, NDTi published guidance for commissioners that is relevant to our topic. A four-page guide for commissioners has been trialled.
• Diagnosis. NICE have published guidance on how to assess autism. Here’s two checklists that you can use to check out whether the assessor has upheld your rights – here and here. The words used in assessment are explained here. Research is underway on the use of social stories to prepare people for assessment. There are also issues connected with eligibility for support. Government has taken an interest in the waiting time for diagnosis.
• Supported living and residential care.
• Access to healthcare. The Westminster Commission present evidence on the barriers that block autistic people out of healthcare. The Royal College of GPs have published an online resource. Guidance for GP surgeries is available.
• Access to social care. See the evidence review here and some information about the autism voluntary sector.
• Networking.
• Service Directory – such as this one from Surrey.
• Reasonable Adjustments. Explained in a briefing note by a group of people in Calderdale.
• Capacity Building to help mainstream organisations offer a respectful and appropriate service to autistic people.
• Public attitudes can perhaps be changed – evidence is available.
• Research. The Autism Research Network publishes evidence summaries.

Further analysis and examples of where these and other services have been commissioned can be found in this examples paper.

Other jurisdictions

• Scotland published guidance in 2008 and a systematic review of prevalence data within a microsegmentation approach in 2018.
• Wales did so in 2017, considering its guidance for commissioning services for people with a learning disability to also cover autistic people.

Local needs and strategies

Particular local authorities, CCGs or NHS Trusts may have conducted a careful Joint Strategic Needs Assessment, like this one from Camden & Islington. The Public Health England Fingertip Profile does not include data on adults. They then go on to produce a commissioning plan for autistic people living in their own area. Examples include:

• 2011 – Bradford, Luton
• 2012 – Brighton & Hove, Bristol, Hampshire, Shropshire  , Wirral,
• 2013 – East Sussex, Gloucestershire, Oxfordshire, Waltham Forest
• 2014 – Dorset, Essex, Isle of Wight , Nottingham, SLAM,
• 2015 – Bracknell Forest, Buckinghamshire, Devon, North Yorkshire, Swindon, Thurrock, Worcestershire,
• 2016 – Calderdale, Camden, Harrow, Solihull, Surrey,
• 2017 – Derbyshire, Havering, Kent, Leeds, Oldham , Tower Hamlets, Warwickshire,
• 2018 – Halton, Herefordshire, Merton,
• 2019 – Greater Manchester, Lincolnshire, Norfolk, Warrington,

Adjacent policy areas

• The Equality Act 2010 protects many autistic people.
• Digital inclusion is addressed in a guide on keeping safe online.
• The NHS Long Term plan was published in January 2019 and contains over 30 references to autism.
• The Transforming Care programme, set out in Building the right support, with progress tracked by NHS England using its Assuring Transformation dataset. This was a result of the 2014 report Winterbourne View: Time for Change – Transforming the Commissioning of Services for People with Learning Disabilities and/or Autism.
• Challenging behaviour. Strategy to support people whose behaviour challenges – sometimes this is addressed within the Transforming Care programme, but at other times it is considered separately. NICE have published guidance. Positive and Proactive Care is also relevant as it seeks to minimise restrictive practices.
• Personalised, universal and integrated care is a growing emphasis from NHS England.
• The Lenehan Review included young people with autism and had a focus on commissioning.
• Guidance on Care and Treatment Reviews affects those in hospital.
• Equalities – Lewisham report their support for people with autism as part of their Public Sector Equality Duty.
• Out of area placements have been the subject of ADASS advice.
• Guidance for commissioners on supporting older people with learning disabilities has been published by NICE.
• The Accessible Information Standard ensures that people are provided with information that they can easily understand so they can communicate effectively with health and social care services.

Competent staff

• Commissioners. In January 2019, Norfolk County Council advertised for a Assistant Director for Learning Disability and Autism Commissioning, offering a salary of £83,000.
• Champions. Surrey have identified Autism Champions and accredited them through the SPELL process.
• Training. NAS has published guidance on general training, as well as an old version and newer versions of specific training for social care assessors. See a manual and curriculum guide for social workers. Skills for Care have also worked on a core skills framework that applies to those working with autistic people.
• Safe staffing. Advice has been offered here, despite the lack of robust evidence.

Public consultation

Consulting with people, families and communities. Scarborough did this regarding their diagnostic service. Approaches should include feedback and complaints (such as the Ask Listen, Do project run by NHS England), and independent advocacy.

Co-producing health and care

• Experiences in the criminal justice system are described, including accounts of what prison and secure hospital is like for autistic people.
• Access to personal budgets
• Autistic people can become a Quality Checker and review NHS services.