- Landmarks. Guidance on commissioning services for people with autism 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 and the national strategy will be formally reviewed in 2019. A consultation is underway on mandatory training on autism for healh and care staff.
- Advice for Commissioners. In 2006 the NWTDT and NAS publshed advice on how to improve commissioning standards for services for children and adults with autism 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 people with autism. 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.
- 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 people with autism 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 here 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 thesee 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 people with autism who have mental health needs and the Green Light Toolkit helps mental health services review their service, STOMP campaigns to stop the inappropriate use of psychiatric medication on people with autism. 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 people with autism 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 people with autism out of healthcare. The Royal College of GPs have published an online toolkit. Guidance for GP surgeries is available.
- Access to social care. See the evidence review here and some information about the autism voluntary sector.
- Service Directory – such as the Calderdale Directory or 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 people with autism.
- 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.
- 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 people with autism.
Local needs and strategies
Particular local authorities, CCGs or NHS Trusts may have conducted a careful Joint Strategic Needs Assessment, like this one from South Gloucestershire, this from Camden & Islington and this from Norfolk. 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, North Lincolnshire
- 2012 – Brighton & Hove, Bristol, Dorset, Hampshire, Shropshire , Wirral,
- 2013 – East Sussex , Gloucestershire, Oxfordshire, Waltham Forest ,
- 2014 – Essex, Isle of Wight , Leicester, Nottingham, SLAM,
- 2015 – Bracknell Forest, Buckinghamshire, Devon, Manchester, North Yorkshire, Somerset, Swindon, Thurrock, Worcestershire,
- 2016 – Bristol, Calderdale, Camden, Hackney, Harrow , Solihull, Surrey,
- 2017 – Derbyshire, Havering, Kent, Leeds, Oldham , Tower Hamlets , Warwickshire,
- 2018 – Halton . Herefordshire, Lincolnshire, Merton,
- 2019 – Warrington
Adjacent policy areas
- The Equality Act 2010 protects many people with autism.
- 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 progrramme, 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 BILD and NDTi.
- The Accessible Information Standards ensure that people are provided with information that they can easily understand so they can communicate effectively with health and social care services.
- 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.
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.