Governance and structure
The National Autistic Taskforce (NAT) has made significant progress since its inception at the beginning of 2018. The NAP Autistic Advisory Panel (AAP) was expanded to create the NAT strategy board (SB), ensuring representation from the four nations. NAT has been established as a company limited by guarantee (CLG). A shared online platform has been created for project management, and we have held face-to-face meetings of both the SB and the executive. NAT has been structured into a number of ‘GNAT’ sub-groups (listed under the headings below) led by members of the SB.
A Skills survey has been drawn up and will be used to find out more about the interests and knowledge of the many autistic people who have declared an interest in NAT. This wider network will be used for sharing knowledge and expertise more widely and finding out as much as possible about social care practice nationwide. The network provided people for a focus group on Mental Health reforms, and expert feedback on the Self-Assessment process on the Autism Act from members of local partnership boards.
Media and publicity
A website for NAT is currently being built. A draft NAT logo has been created (see above) and a slogan agreed upon: Bolder voices, better practice. We have also drafted a mission statement:
Give autistic adults a stronger voice in the decisions and directions of our own lives – especially those with highest support needs and, often, least autonomy. We draw on deep knowledge of rights and obligations, already enshrined in law but rarely respected in practice, to increase autonomy in Autistic lives.
We seek to ensure autistic voices are included alongside those of families, policy makers and professionals in debates about matters which affect the people whose rights Dr Yo Dunn addresses in ‘The Other Half‘ (http://www.autscape.org/2017/programme/presentations).
Social Care
Draft guidance on quality care for autistic people is being produced for providers and commissioners. This is directly linked to recommendations from the NAP project, backed by research evidence where available and the expertise and collective knowledge of autistic adults. The finished document will be produced in an attractive format in time for the NAP legacy forum event in November and our efforts thereafter will focus on ensuring wide dissemination of the guidance and progress towards that standard in care services throughout the UK. We have also contributed to Social Care related public consultations on:
- Reducing the Need for Restraint and Restrictive Intervention for Children and Young People with Learning Disabilities, Autistic Spectrum Disorder and Mental Health Difficulties
- The Right to Freedom and Safety – Select Committee inquiry on reform of the Deprivation of Liberty Safeguards, the only Autism-specific organisation to do so
- The Adults with Incapacity (Scotland) Act reform consultation
- Skills for Care – Adult Social Care Workforce consultation
This group has also contributed to the Autism board self-assessment methods, and identified social care policy differences between England, Wales, Scotland and Northern Ireland
The group also hopes to develop some longer term goals for quality care in ways that maximise autonomy and minimise compulsion. This includes contributing to potential reform of the legal framework including the Mental Health and Mental Capacity Acts and working towards the full realisation of the United Nations Convention on the Rights of People with Disabilities (UNCRPD) in the UK. One of the key challenges is around ‘ascertainable wishes and preferences’ and this will link closely to the work of the Communication and Advocacy GNAT set out below.
Communication and Advocacy
This GNAT will be developing an approach to support and maximise inclusion in care homes of all sorts, particularly through the use of digital technology, tying into aspects of the care quality guidance and referencing a range of legal rights. Potential allies will be identified within social care providers, charities, campaigning groups, and key players in institutions such as the CQC and Health Education England.
A specific priority is to explore ways to ascertain choices and interests among those who do not use speech, especially in relation to who they want to speak up for them and claim to know their best interests. This will link closely to the work of the Social Care GNAT on UNCRPD implementation.
Psychiatry
- NAT has provided Independent Reviews of Mental Health Act reforms in Scotland,
- NAT has drafted a contribution to the current Mental Health Act review in England and Wales and as well as the MH focus group mentioned above. This contribution will be finalised shortly, once it has been approved by the SB.
Key psychiatrists working in both Learning Disability and Autism have been identified. Damian Milton sits on a working group on Autism for the Royal College and advises re their Autism Champions program. Participation in MH reform in Scotland continues.
Research
Alongside the Communications GNAT, the Research GNAT will be working on developing needed infrastructure to support and maximise autistic involvement at every level, and that research priorities are strongly influenced by the views of the autistic community, but also identifying where there are current gaps in evidence, particularly in regard to community priorities. This GNAT has been coordinating efforts regarding potential collaborative bids for projects. We have also recently met with representatives of Autistica, where agreement was found for expanding social scientific research in the field, the need for training (and implementation of in practice) regarding epilepsy, as well as ideas for future Autistica research workshops discussed, such as in the area of social care.
A priority area in which research will be promoted will be ways to ascertain choices and interests among those who do not use speech.
This GNAT will also contribute to the ongoing work on reform of the legal framework around the participation of autistics who are deemed to lack capacity to consent to their involvement in research.
Sustainability and fundraising
An autistic specialist in this area has been tasked with helping us draw up a Case for Support that will explore ways in which NAT can be made sustainable into the future.