Welsh Parliament
Cross-party Autism Group
Minutes
Thursday 19 January, 3.30pm-5pm
Hybrid meeting, Ty Hywel
Present: Mark Isherwood MS, Carolyn Thomas MS, Frances Rees, Sioned Thomas, Kirsty Jones, Rosie Edwards, Chris Haines, Keith Igram, Megan Thomas, Shaun Bendle, Jeff Morris, John Price, Stephane Guidon, Kyle Eldridge, Carys Holt, Catherine Ede, Catherine Vaughan, Steffan Davies, Sian Emlyn Edwards, Angela Ellis, David Evans, Heather Lucas, Jake Smith, Kirsty Rees, Ruth Rabet, Samantha Lambert-Worgan, Stacey Baker, Alexander Still, Aoife Pryor, Suzanne Rinvolucri, Hannah Madd, Janet Willicott and Angela Ellis
Apologies: Llyr Gruffydd MS, Dr Sarah Broadhurst, Dr Alberto Salmoiraghi, Stephen Morris, Jill Grange, Gareth Marshall, Elizabeth Naylor and Michal Blochowiak.
1. Welcome and introduction
Mark Isherwood MS welcomed everyone to the meeting of the Senedd’s Cross-party Autism Group and introduced the speakers.
2. Minutes of previous meeting
The minutes of the annual general meeting held on Monday 24 October at the Well-being Hub in Wrexham were agreed after being proposed and seconded as an accurate reflection by Carolyn Thomas and Stephane Guidon, respectively.
3. Annual report and accounts
MI informed attendees that the Cross-Party Autism Group’s annual report and financial statement have been published on the Senedd website following the annual meeting.
Sioned Thomas, Frances Rees and Kirsty Jones – development officers for the Welsh Local Government Association – gave an overview of the National Autism Team’s (NAT) work. They also provided an update on how the NAT is supporting implementation of the Code of Practice, with ST the voice of autistic people is integral to the NAT’s work.
KJ told the meeting that Dr Duncan Holtom, from People and Work, will be leading on evaluation of the statutory code. She said the aim is to review the extent to which the duties in the Code have been being met since its implementation, and to make recommendations for improvements. The first phase will focus on implementation by local authorities, health boards and Regional Partnership Boards, with the second phase in 2024 focused on people’s awareness and experiences of the code. She also played part of a podcast, produced with Autistic UK, which tries to ensure that autistic people and their families understand their rights under the Code of Practice.
KJ added that the NAT is leading on two workstreams under the new neurodivergence ministerial advisory group: the first focused on urgent need and the second on longer-term service redesign to ensure sustainability. Highlighting the new four-level training framework, she outlined work with local authorities and health boards, with new modules on understanding autism and effective communication.
FR raised the NAT’s Community of Practicesessions, which offer an opportunity for professionals to share good practice. She highlighted a session on eating, food and diet – led by Emma Reardon from Autism Well-being – saying one in five women in eating disorder clinics is on the spectrum. FR also raised sessions on mental health, involving the Royal College of Psychiatrists, as well as gender and autism. FR said forthcoming Community of Practice sessions will focus on Alexithymia and complexity.
She highlighted a resource toolkit for CAMHS professionals and the work of a national adult mental health group. FR said the NAT is working closely with Christy Hoskings who leads Betsi Cadwaladr UHB’s neurodevelopmental patient experience team. She also pointed to training and resources for education professionals as well as those working in primary health care or the emergency services.
ST added that the NAT is working on advice sheets for autistic adults on people’s lived experience of subjects such as seeking a diagnosis and masking.
Megan Thomas asked about the NAT’s work around eating disorders, questioning whether those who are self-diagnosed can access the same support. ST agreed about the importance of ensuring that diagnosis is not a barrier to accessing support. She said the NAT would never insist that someone have a formal diagnosis to access any of its groups, adding that resources are available on autismwales.org for anyone to access.
Drawing on his constituency casework, MI raised concerns about public bodies “cherry-picking” duties under the Social Services and Well-being Act and Code of Practice on the Delivery of Autism Services. He asked how people with lived experience can be more involved in monitoring and enforcement. KJ said Dr Holtom’s evaluation will include the experiences of autistic people, families and carers since the code was introduced.
Samantha Lambert-Worgan raised concerns about a lack of autism understanding among staff in CAMHS, saying it has been a barrier to her son accessing support.
5. National Autistic Society’s education casework service
Rosie Edwards, the National Autistic Society’s (NAS) education and transitions advice coordinator for Wales, outlined how the charity can help with advice and support on educational entitlements, transitions, school exclusions, and education tribunals. She told the meeting the NAS also offers a volunteer-led parent-to-parent support helpline, which can provide emotional support for parents and carers.
RE said the education rights helpline has supported nearly 100 families in the past year, and more than 800 since 2015. Giving a geographical breakdown of calls to the service, she said the charity receives the highest call volumes from Flintshire (14%), Cardiff (12%) and Conwy (10%) and the lowest from Blaenau Gwent, Carmarthenshire, Ceredigion, Gwynedd, Neath Port Talbot and Torfaen (2%).
Highlighting some of the challenges the casework service faces, she said parents and children often feel like they are not listened to. She pointed to NAS research which found it’s been harder to contact school staff, with around half of parents saying their child’s academic progress suffered during the pandemic. RE also raised the importance of improving autism understanding in schools and ensuring the new ALN system doesn’t ‘raise the bar’ in terms of access to support.
In closing, she highlighted positive feedback from families, with 99% feeling listened to, 92% more knowledgeable about their child’s educational rights and 100% of respondents said they would recommend the casework service to others.
Janet Willicott asked a question about academically gifted children, complex presentation and those who fall between mainstream and special school provision. RE said the casework service can help families explore all the different options available, such as home education. MI suggesting returning to the topic in greater depth at a future meeting. Responding to a contribution about legal aid, MI said the group would also revisit the important subject of legal support in future.
6. Any other business / closing remarks
MI informed attendees that the next group meeting is scheduled for Monday 17 April 2023 from 10.30am to midday. The meeting will be held in North Wales at Bangor University, with members again able to join virtually or in person.
In closing, MI thanked all the speakers, everyone in attendance, and staff at the Senedd Commission for their help in hosting the meeting.