Report, Document

Autistic Spectrum Disorder (ASD) strategic action plan – delivery plan: annual report 2019 to 2020

A summary of our autistic spectrum disorder delivery and strategic action plans for 2019 to 2020.

First published: 24 March 2021

Last updated: 24 March 2021

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Introduction

This year has seen Wales and the rest of the world face the COVID-19 pandemic which has had an unforeseen effect on everyone’s lives. Early in the year the Welsh Government had to urgently re-allocate staff and resources to ensure communities were protected from impact of the virus.

Since the publication of the autism strategy in 2016 we have published two comprehensive annual reports, this year the report for 2019/20 is more concise as resources continue to be hard pressed.

Work undertaken between April 2019 and March 2020 has primarily focused on two main areas, first autism services such as embedding the Integrated Autism Service and secondly on the development of the draft Statutory Code of Practice on the Delivery of Autism Services and its accompanying guidance document ready for public consultation.

As in previous years this report will follow the structure describing What we have done, What we were told and What we will do.

What we have done

Autism services

Children’s neurodevelopmental services (ND)

In addition to targeting investment this year into improving the capacity of NHS neurodevelopment (ND) teams, we have continued to collect data against the waiting time target of 26 weeks from first referral to first face-to-face appointment. We are working with Health Boards to ensure the quality of the data collected and that this target is met, however demand for support from ND teams has been higher than expected and as such we are aware that this has been challenging for a number of Health Boards.

To support the continued improvement of multidisciplinary neurodevelopmental teams which assess and diagnose neurodevelopment conditions in health boards, the NHS Together for Children and Young People programme (T4CYP) was extended at the end of 2019. This year the T4CYP has continued to support the development of a whole system approach for children and young people with neurodevelopmental conditions including the development of a future vision and policy for neurodevelopmental support services in Wales.

This year, the NHS Delivery Unit has worked to support health boards with managing demand and capacity. Although not yet completed across every health board in Wales, the unit aims to train key staff in the principles of demand and capacity management and includes looking at current processes, rather than simply reviewing models of delivery.

Integrated Autism Service (IAS)

The phased roll out of the Integrated Autism Service began in 2016 and backed by £13m funding by April 2019 all regions were operational. The IAS offers assessment and diagnostic services for adults, and support services for adults and parents and carers. As reflected in last year’s annual report, in April 2019 we published the evaluation on the roll out of the service. The review found that it was a welcome new service, recommendations were made in relation to service monitoring, stakeholder involvement and alignment with children’s neurodevelopmental services. An extension to the review was agreed and in September 2019 the Scoping Study for the Alignment and Development of Autism and Neurodevelopmental Services was published. This report confirmed acknowledged emerging issues with increasing demand and limited capacity for both children’s neurodevelopmental and adult autism services in the Integrated Autism Service. The report can be found via the following link: Scoping Study for the Alignment and Development of Autism and Neurodevelopmental Services.

Demand and capacity review

As a result of recommendations made by the scoping review a Ministerial commitment was made to undertake a demand and capacity review of neurodevelopmental services which includes autism, to identify gaps in provision and to support the development of sustainable future services.

Initial benchmarking work has been undertaken by the services, however due to the impact of COVID-19 further commissioning was delayed and will now be completed by the end of 2020. The review will take place during 2021 and to ensure continuity in support in September 2019 funding for autism services was made recurrent subject to the outcomes of the review. In September 2020 the current funding arrangements for the IAS were confirmed up to March 2022.

The code of practice on the delivery of autism services

During 2019/20 we built on earlier consultation on the development of the code, we established technical groups which met in July and November advising on each area of the code which are:

assessment and diagnosis
meeting support needs
awareness raising, information and training
planning, monitoring and stakeholder involvement

Members of the technical groups included autistic people and their parents and carers, local authority autism leads, IAS and ND service representatives and third sector organisations. At each meeting, attendees went through the relevant chapter and had an opportunity to comment in detail on a draft which was shared with them prior to the meeting. Feedback at each of the meetings was positive and constructive.

We also undertook a programme of wider engagement with autistic people, their parents and carers and with professionals, as described in the What We Were Told section below. The National Implementation Advisory Group also met twice during the year and these meeting focussed on the development of the code.

By March 2020 having worked closely with stakeholders the draft code of practice and accompanying guidance was ready for publication, but this was purposely delayed due to the impact of the COVID-19 pandemic. Arrangements resumed during the summer and publication of the consultation went live on 21 September 2020, it is open to 14 December, with online public consultation events organised for November 2020.

A summary of the draft code is at appendix two.

Sustainable Social Services Third Sector Grant Scheme 2020-2023

During 2019/20 two autism third sector organisations were successful in their proposals for the Sustainable Social Services Third Sector Grant Scheme 2020 - 2023. The organisations are:

National Autistic Society (NAS) Cymru whose project Spectrum Clubs aims to increase the number of NAS peer support and social groups available to autistic adults across Wales.
Autism Connections Cymru’s One Stop Shop – this project will bring additional resource and expertise to existing services, particularly in relation to employment and welfare support

These two projects will increase capacity and bring new expertise to existing autism services. These projects began in April 2020 and funding is available for up to three years. A collaboration board has been set to promote joint working across services.

National autism team

The Welsh Government funds the National Autism Team to support the delivery of the ASD Strategic Plan and Delivery Plan in partnership with key stakeholders. The team has been key in the successful delivery of the IAS, continued support for the local authority network of autism leads, and the development of resources and support available on their dedicated website. The NAT also published its annual report for 2019 – 2020 which can also be found on its website.

During the COVID pandemic the team has worked with partners to develop advice on the lockdown rules and guidance to help autistic people to help cope with the impact of COVID-19 on their everyday lives, this will continue as we support autistic people to engage with the post COVID-19 world.

What we were told?

Engagement

During 2019/20 we undertook a comprehensive engagement programme. In November 2019, we arranged two stakeholder events one in Llandudno and the second in Carmarthen. There was a wide range of attendee at both events including autistic people, families and carers as well as local authorities, local health boards, Integrated Autism Services (IAS) and education. The event in Llandudno in particular had a strong representation from local parent and family groups. Attendees at the event received a copy of a summary of each of the four chapters of the Code and had the opportunity to highlight any gaps and also share their experiences of accessing services. The feedback at both events has also been reflected in the draft Code and the accompanying guidance document. Attendees fed back that there was greater clarity needed on a number areas which could addressed in the guidance document; examples of areas were referrals pathways and enforcement of the Code.

The event in Llandudno was attended by a teenage autistic young person with his parent, who during the event drew a number of small sketches to explain how he was feeling during the day – one of the sketches was entitled 'autistic, but proud of it'.

The Welsh Government Autism Policy Team were invited to return to North Wales to speak to local groups. This was arranged in February 2020 where the team met with local services and groups and arranged an informal engagement event to discuss the Code and future services.

Also during the last year, the team has also met with other parent and carer groups in Wales and with representatives of the Royal Colleges, DWP, Health Education and Improvement Wales (HEIW), Social Care Wales, Cardiff University, third sector organisations such as National Autistic Society Cymru and All Wales People First.

What we will do?

Statutory Code of Practice on the Delivery of Autism Services and accompanying guidance document

The year 2021 will be a busy year where we will deliver the final Statutory Code of Practice on the Delivery of Autism Services and the accompanying guidance. The public consultation on the draft Code closed on 14 December 2020.

We have reviewed the responses and the feedback received from online public consultation events. We have published a consultation report. The report summarises responses and identifies the key themes raised which will inform final drafting of the Code and guidance during January and February 2021. The aim will be for a final version of the Code and guidance to be completed before April 2021.

Demand and Capacity review

As explained earlier in this report we are working to commission the main phase of the review and anticipate it will be undertaken during 2021, the outcomes will inform a new delivery plan which will also contain plans for implementation of the code of practice.

Together for Children and Young People’s Programme 2 (T4CYP2)

The Together for Children and Young People’s Programme neurodevelopmental work stream worked to improve ND services between 2015 and 19. T4CYP2 will continue from November 2019 to 2022, its objective is to further support health boards to implement the Pathway and Standards. T4CYP2 wants to support the development of a whole system response for children and young people with ND conditions, providing an early offer for children and young people and their families, who otherwise would be referred to the ND team.

Implementation of the Statutory Code of Practice

The Minister for Health and Social Services’ Written Statement of 21 September outlines the next steps for the Code.

We will publish a summary of consultation responses in early 2021. We want to publish the final Code this term, however, due to the impact of COVID-19, it may not be possible to complete this until the start of the next Senedd term next May because of the on-going pressures placed on the capacity of Welsh Government’s legal services.

We will continue with our intention to commence implementation of the Code in September 2021 and in preparation for this a delivery plan will be developed in partnership with our stakeholders.

This will include actions to raise awareness of the Code and to support and organisations with implementing the new requirements. We will also engage with autistic people so everyone understands what the code will mean for them. We will also establish a new Welsh Government autism advisory group to provide advice and feedback on delivery, it will work closely with the National Autism Team in their role to support the delivery of the autism strategy.

A summary of actions taken in relation to the Delivery Plan is at appendix one.

Appendix One: ASD delivery plan update 2019 to 2020

Assessment and diagnosis
What we want to achieve	What will we do	Progress
Autistic children, young people and adults will have access to timely referral, assessment and post diagnostic services which meet their needs.	Deliver improvements to children’s assessment and diagnostic services. This will include the implementation of the national standardised diagnostic assessment pathway to ensure consistency.	All health boards are aware and using the pathway to guide their services.
Autistic children, young people and adults will have access to timely referral, assessment and post diagnostic services which meet their needs.	Improve timeliness of access, for children and young people, a new 26 week time target from referral to first assessment appointment.	Waiting times will be published on Statswales in due course.
Autistic children, young people and adults will have access to timely referral, assessment and post diagnostic services which meet their needs.	Ensure ongoing monitoring of progress and timeliness of assessment and diagnosis. This will be incorporated within the formal planning and performance management mechanisms of health boards.	Waiting times are reported monthly to Welsh Government. From November all health board figures will be collected under the NHS delivery framework.
	Deliver improvements to adult diagnostic services through the National Integrated Autism Service. This will include: The development of a national model that will be implemented across Wales. On-going monitoring and reporting of progress against the agreed standards of the service.	The Integrated Autism Service is available in all regions in Wales. IAS services report to the Welsh Government on a quarterly basis. The IAS services have developed service standards for the collection of outcome focussed monitoring data. A demand and capacity review of neurodevelopmental and autism services is being commissioned to support the development of sustainable services.
Autistic children, young people and adults will have access to timely referral, assessment and post diagnostic services which meet their needs.	Regional Partnership Boards will be required to report on progress.	Regional Partnership Boards submit quarterly returns through the Integrated Care Fund.

Meeting support needs
What we want to achieve	What will we do	Progress
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Bring forward legislative reform for children and young people with additional learning needs in December 2016 and monitor progress. Support the delivery of the phase 2 of the Together for Children and Young People Programme (T4CYP) neurodevelopmental work stream’s holistic approach.	The Additional Learning Needs and Education Tribunal (Wales) Bill was passed by the National Assembly for Wales on 12 December 2016 and became an Act on 24 January 2018 following Royal Assent. Consultation on the draft ALN Code and regulations to accompany the Additional Learning Needs and Education Tribunal (Wales) Act 2018 was undertaken in 2019. The statutory roles created under the Act will commence in January 2021. Guidance for people in these roles will be issued in advance of the ALN Code and regulations being laid before the Senedd in February 2021. The new ALN system will commence on a phased basis from September 2021. The T4CYP 2 work stream commenced in November and will run until 2022, collaborative working is established to enable alignment of policy development across neurodevelopmental condition services.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Develop and Publish a Code of Practice on the Delivery of Autism Services under the Social Services and Well-being Wales Act 2014 and NHS Act in partnership with stakeholders including autistic people and their parents and carers.	The consultation on the draft code of practice and guidance commenced on 21 September 2020, it will close on 14 December. A consultation report will be published early in 2021, the code will be finalised and implemented from September 2021.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Continue to develop and roll out our ‘Learning with Autism’ programmes to improve support available to children and young people across early years, primary, secondary and further education sectors.	The National Autism Team continues with their successful programmes in both Junior and Secondary schools. They are co-producing FE and Work Based learning schemes. More detail is available in their annual report.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Improve opportunities for people with autism. This includes monitoring the delivery of the Getting Ahead Two programme to support long term youth employment for people with learning difficulties or disabilities including ASD.	We continue to work collaboratively with the Getting Ahead Programme through our autism services but this has been impacted by COVID-19.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Welsh Government to take action to become an autism friendly employer by participating in the Positive About Working with Autism Programme.	In the Equality and Inclusion Action plan 2017 – 2020 Welsh Government agreed: ‘Welsh Government is an autism friendly employer – Engage with staff with autism to identify what specific actions could be put in place : e.g. buddy system, training for teams etc.’ To support this action Welsh Government have: Set up an Informal ASD Network which is an active peer support network. There is an identified Director in Welsh Government as an informal champion / sponsor. The Director has also been reverse mentored by the ASD Network Chair. The Director has written and published a blog to all staff on her experience of being reversed mentored by an autistic colleague. The ASD Support Group has seen an increase in numbers and activity since Covid restrictions were put into place earlier this year. It continues to have an active daily chat as well as a members only intranet site that hosts discussion boards, members blogs and useful links to ASD resources and interesting news. The group has been using virtual ways of connecting since it was first started, so have easily been able to keep in touch with members and support each other on a daily basis. The ASD Support Group has also delivered bespoke training for managers/teams, designed and delivered by the ASD Group co-chairs on an ad hoc basis as requested. They have offered bespoke mentoring/coaching to ASD group members and have also represented/accompanied ASD Group members at their request at some personal meetings within WG (HR, line management, etc.). More recently, they have been attending all the Learning Lab pilot sessions (our online training offering) to provide feedback from an ASD accessibility perspective. As part of induction training for all new staff, the ASD Network is introduced, along with all the other staff diversity networks. The Welsh Government Diversity Award 2019 was won by the Chair of the new ASD Network. Recognising the impact it has had on autistic staff members and colleagues who may have autistic family members. The Chair and more recently appointed co-Chair have also written several blogs which have helped people understand what it’s like to be autistic on a day to day basis. The blogs have been shared and recognised by the wider Civil Service and Cabinet Office. Autism Awareness Week 2018 – The launch of the ASD Network took place and there were a number of blogs published from colleagues. As part of the week there was an Autism Awareness session where we invited a welsh Autism Blogger to come into the office and give her account of being autistic. Intranet articles published to all staff with quotes of support from Permanent Secretary and Board Diversity Champion; also included in the article were links to TED Talks. HR Panel Chair Training – Last year, all HR Panel chairs attended refresher training. Part of this training was a session on reasonable adjustments during the recruitment process. A big emphasis was placed Autism and how as an organisation we can attract, recruit and retain autistic members of staff, and what adjustments may be requested and how we can accommodate them. This includes allowing an autistic person to take notes into an interview if they request it. Visitors Guidance: Autism friendly guidance has now been produced for anyone who maybe visiting Cathays Park for an interview or a meeting. It gives clear instruction on accessing the building, reception and going through security. This is now published on the external Welsh Government web site We are developing our new Equality, Diversity & Inclusion Action Plan 2020-2025. Our overall objective - as set out in Welsh Government’s current Strategic Equality Plan – is that by 2025 Welsh Government will be an exemplar employer: Increasing diversity by addressing in particular the underrepresentation of disabled people and people from minority ethnic communities at all levels of the organisation and the underrepresentation of women in senior roles Removing barriers and Supporting staff from all backgrounds to reach their potential, creating equality of opportunity for all We are committed to barrier removal for current and potential future staff, which will benefit autistic staff and job applicants. We are also committed to embedding the Social Model of Disability in all that we do. Actions we will be taking forward are: Our Equality, Diversity and Inclusion Action Plan for 2020-2025, was recently signed off by our Executive Committee. The supporting delivery plan says that we will offer training on autism and neurodiversity to HR Advisers and front of house staff, and offer further if requested. We will also develop a staff networks policy where we will formalise the support that we provide for our staff diversity networks and peers support groups – including our ASD network. For UN Day of Disabled People (3 December 2020) we will be running internal awareness communications as part of our Respect Campaign. The focus is on Invisible Impairments and autism awareness and support will form part of the campaign.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Work with organisations across Wales to raise awareness and for them to become autism-friendly working environments. This will include promoting the Positive About Working with Autism Programme.	The National Autism Team has delivered training and awareness sessions to a variety of public and private sector work places. Delivery of this action has been impacted by the COVID-19 restrictions.
Autistic children, young people and adults and their family and carers can access advice and preventative services to address unmet need in education, employment and health and social care.	Delivery of the National Integrated Autism Service. This will be implemented from April 2016 over a three year period and will include: The implementation of a standard diagnostic assessment service for adults Provision of advice and support for all people with autism including their family and carers Development of training and support packages for professionals	All regions in Wales now have an IAS service which offers a standard diagnostic assessment service for adults. They also provide advice and support for all people with autism and their families / carers. Training and support packages for professionals are available although these vary from region to region depending on the maturity of the service and the resources available.

Awareness raising, information and training
What do we want to achieve	What will we do	Progress
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Ensure autistic people and their family and carers as well as professionals are made aware of the resources available on the ASDinfowales website. Develop a communication strategy setting out specific actions by end of January 2017.	The National Autism Team annual report highlights the continuing development of the website and increasing web hits. The National Autism Team has developed and published an engagement strategy. Further work has been impacted by COVID-19 restrictions.
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Awareness raising campaign Work with the partners, including autistic people and their families and carers to develop a joint approach to rolling out an autism awareness raising campaign, including increased awareness of available support services and resources including those on the NAT website.	The National Autism Team continues to work closely with stakeholders, including families and carers, detailed information is in their annual report:
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Continue to develop information and resources for identified priority areas, to be freely available through the NAT website. Priority areas will be reviewed and updated on an annual basis.	The National Autism Team annual report highlights the progress achieved in developing new resources and delivering existing packages.
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Develop and deliver training resources and material to raise awareness of autism and support for professionals working with children or adults with autism. Priority areas will be updated on an annual basis.	The National Autism Team’s annual report highlights the progress achieved. Priorities are updated in their annual work plan.
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Work collaboratively with other organisations dealing with non-devolved matters to raise awareness of autism. This will include the police, fire service, courts and the National Offenders Management Service.	The National Autism Team’s annual report highlights the progress achieved in working with non-devolved organisations such as the fire service.
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Update and expand guidance for housing services on supporting autistic people	The guidance was launched on 21 October 2019. See the National Development Team annual report. The guidance is to help professionals working in housing to better understand the needs of autistic people in gaining access to housing services.
Autistic people and their families and their family and carers and professionals report they have access to good quality information, advice and training on autism which meets their needs.	Continue to support the ASD National Leads and team to provide expert advice and guidance on autism to the Welsh Government, professional groups and stakeholders.	The National Autism team supports quarterly meetings and promotes good practice sharing.

Planning, monitoring and stakeholder involvement
What do we want to achieve	What will we do	Progress
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Establish an Implementation Advisory Group to monitor progress and delivery of the specific actions in the Strategic Action Plan and Delivery Plan. This group will be established before 1 April 2017.	The ASD Implementation Advisory Board met twice during 2019/20. A new group will be convened from 2021 to support delivery of the Code of Practice.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Publish an annual report setting out the progress in relation to the specific actions within the Strategic Action Plan and Delivery Plan. This will include performance information and timeliness of assessment and diagnosis.	Full annual reports have been published for 2017-18 and 2018-19. A concise report is published for 2019-20 reflecting the impact of COVID-19 on resources.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Ensure Regional Partnership Boards report on progress in relation to the specific actions within the Strategic Action Plan and Delivery Plan. This will include performance information and timelines of assessment and diagnosis.	Regional Partnership Boards continue to provide quarterly reports on the Integrated Care Fund which is supporting the roll out of the Integrated Autism Service.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Welsh Government to consider ways in which disability data will be incorporated into the new social services data collection.	The Performance and Improvement Framework will develop an Adults Receiving Care and Support Census with key stakeholders in 2020/21 to collect more robust information on disability that is able to be linked with other data and replace legacy reporting. Development of the new census has been delayed slightly by the COVID-19 pandemic. The Children Receiving Care and Support Census and the Children Looked After Census will also be reviewed as part of the same programme of work. A revised timeline is scheduled to commence in November 2020.The 2021/22 year will be used to pilot the new data collection with local authority partners.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Working with partners to look at how we collect data on meaningful outcomes to inform about the quality and effectiveness of the services provided and to identify where there may be continuing gaps in support.	A data collection system has been developed and is being piloted across the IAS services from March 2019. This information will inform the forthcoming demand and capacity review.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Establish a GP register for autism	Initial discussions have been held with GPC Wales and NWIS about establishing a register within the GP clinical system, and discussions held with the health board Associate Medical Directors Group to identify a lead to work with policy colleagues and Autism specialists. The impact of COVID-19 has prevented this work from being progressed.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Consult on changes to the Social Services and Well-being Wales Act Part 2, Code of Practice in relation Population Needs Assessment and Area Plans, mandating core themes	We will issue additional guidance to support the new PNA process which will also set out our expectations in relation to services for autistic people. We will review draft assessments to ensure sufficient consideration of autism service development.
Children, young people and adults with autism and their family and carers are involved and consulted in the delivery of ASD SAP.	Monitor the implementation of legislative requirements under the Social Services and Well-being (Wales) Act and keep the need for future autism related legislation under review.	The Welsh Government contributed to the scrutiny of the Autism (Wales) Bill. We have carefully considered the recommendations made by scrutiny committee in the development of the forthcoming code of practice and future service improvement priorities.

Summary of the draft code of practice on the delivery of autism services

Development of the statutory code of practice on the delivery of autism services.

This year has been a busy year for the development of the draft Statutory Code of Practice on the Delivery of Autism Services. The Code contains four chapters which align with the four chapters of the ASD Strategic Action Plan 2016, and are mirrored in the Code’s accompanying guidance document these are:

Chapter one - assessment and diagnosis - This section describes arrangements for people who may be autistic to access assessment and diagnosis services. For example, access to multidisciplinary services trained in the diagnostic techniques to identify autism and support for people referred for diagnostic assessment and their families or carers.

Chapter two - accessing health and social care services - This section covers access to health and social care services. It describe how services should accommodate the needs of autistic people, including ensuring that IQ is not a barrier to access support.

Chapter three - awareness raising and training on autism - This section describes how local health boards and local authorities should promote inclusion for autistic people in mainstream services, by ensuring that the wider community has an appropriate understanding of autism. It also requires organisations to undertaken autism training needs analysis for staff and to ensure training is available which is suitable for their roles.

Chapter four - planning, monitoring services and stakeholder engagement - This section describes how local health boards, local authorities and their partners must include autism as a separate theme when undertaking a joint population assessment of care and support needs.