Cross-Party Autism Group
Minutes
Thursday 12th December 202 15:00pm - 16:30 pm Microsoft Teams
Present: Mark Isherwood MS (Chair), James Radcliffe (Secretary - NAS), Nigel Morgan, Kerrie Hopwood, Alexander Still, Amy Gray, Julian Morgan, Sam Forrester, Robin Jones, Dawn Cavanagh, Dan Rose, Kirsty Rees
Apologies: Llyr Gruffydd, Hefin David, Kara Monkiewicz, Lee Green.
1. Welcome
Mark Isherwood (MI) welcomed everyone to this meeting of the Senedd’s Cross-Party Autism Group.
2. Minutes of previous meeting
A decision was taken to approve the minutes of the last meeting.
3. Matters arising
James Radcliffe (JR) explained that since the previous meeting we have written to the Minister for Mental Health and Well-being regarding the guide raised by the Association of British Insurers but have received no response
4. Annual General Meeting
MI explained that the rules for cross party groups require an annual general meeting to take place, and this would occur in this meeting. He formally stood down as Chair, and JR opened nominations. MI was proposed by Alex Still (AS) on behalf of Hevin David MS, and this nomination was seconded by Dan Rose (DR) on behalf of Carolyn Thomas MS. MI was subsequently elected as the chair of the group.
JR was then nominated for secretary by AS on behalf of Hefin David, and seconded by DR on behalf of Carolyn Thomas.
That concluded the formal business for the AGM.
5. Mental health support for autistic people
Amy Gray (AG) of the charity Kim Inspire presented on mental health for autistic people. She explained that Kim Inspire is a community mental health charity that works with many autistic people. They have noticed the amount of autistic people seeking help for mental health has increased in recent years, and that although autism is not a mental health condition, autistic people are at increased risk of mental health difficulties. However, they face increased barriers to accessing appropriate care. These barriers include inappropriate settings, labelling autistic people as ‘too complex’, and financial barriers in accessing therapy.
Kim Inspire has thought differently about how to support autistic people, and this has led to several suggestions/recommendations they have. They work with autistic people themselves in developing services and interventions, adapting them to individuals. They also ensure practioners access appropriate training that is designed by Neuro-diverse (ND) people. She added that we need to stop measuring ND people against Neuro-typical people and then deeming them lacking. We also need to avoid stigmatising and reinforcing prejudice.
The presentation concluded and a wider discussion followed. Nigel Morgan (NM) congratulated Kim for the work it was doing. He commented that there is a huge black hole in transition to adult services from youth services, that many autistic people feel frustration about explaining their circumstances repeatedly to different services, and there being no resource for keeping things right but then resources having to be found for when things go wrong.
Julian Morgan (JM) stated that it was an encouraging presentation as knowing a practitioner has undertaken appropriate training is hugely encouraging for an autistic person. JM then asked about the stolen lives campaign, and whether KIM had experience in supporting people in relation to that. AG did say although KIM did not have direct roles in this campaign, she personally knew of the issue. JM highlighted the lack of community services in creating the barriers for people being discharged from inpatient units.
Amy also then explained that KIM works with women and girls under 24 and does work with Betsi Cadwaladr.
The group then agreed that it would write to the WG on the barriers faced by autistic people, referring to the presentation.
6. Update on reforms to the Mental Health Act
Sam Forrester (SF) of the National Autistic Society (NAS) then presented on the new Mental Health bill in Westminster. He started by highlighting the current situation, noting the human rights scandal of inappropriate detention and the long-standing campaign for changing the Mental Health Act – specifically campaigning to change the situation so that autistic people can no longer be detailed purely because they are autistic (which the current proposed bill does). He explained how the NAS wants to strengthen the bill by ensuring that the system does not criminalise or incorrectly co-diagnose other conditions to obtain detentions. He also noted that getting community support is crucial
The discussion then opened with MI asking about what should be done about mental health conditions that co-occur because services treated someone badly. SF explained that training for the workforce will be crucial in ensuring that assessments are undertaken properly.
JM asked about safeguards and noted that mental health and autism not catered for in the prison system. He expressed concern about people being shifted from one system to another. He notes that language in the legislation such as ‘give regard to’ care and treatment plans is not strong enough and that compliance with them needs to be thought of. SF stated that NAS is trying to get amendments tabled to ensure a duty to comply with such plans, as well as ensuring better data on those detained in hospital.
Dawn Cavanagh (DC) then noted that Wales had a different system to England, and argued that we are far more unprepared for the changes. This would mean that the right support to enable discharges from inpatient units will not appear. We need to know where the money is coming from to ensure people get support in crisis. SF noted we do need a plan to get services in the community and NAS was hoping to amend the bill to achieve that.
Kerrie Hopwood (KH) raised the fact that autistic people also have physical disabilities, which means more accessible housing and lack of that is the barrier to discharge. MI highlighted others who have raised issue of accessibility and suggests the letter to WG could capture that issue.
The group agreed to write to WG to ensure that community services can be put in place to help implement the changes, and this letter would include issues around housing.
7. Update on Stolen Lives campaign
DC introduced herself and the campaign by explaining her personal story and what had happened to her son. She notes that the campaign has many members and families who fear their loved ones being sectioned, and that people are also threatened with it because of a lack of community and social care. The campaign also has people whose loved ones have died in hospital waiting for the right support to be in place.
Since the previous meeting, the campaign has given a presentation to Cardiff and Vale Parents and Carers forum. She noted that the local authority spoke in the morning but didn’t stay for their presentation in the afternoon, which made the carers and their families angry. They met with Sarah Murphy in October, who said she cared and got it.
The Task and Finish Group (TFG) established to work with government on the issue has met twice now. However, they are concerned about rushing through the issue to finish by March. They want more engagement after making recommendations so they can ensure action is taken, and they want cross party scrutiny of govt to ensure things happen.
The campaign also appreciated the support for their campaign in the recent cross party debate on the issue and appreciated that it was seen as a human rights issue.
She concluded by noting that thankfully her son now has a place in the community, but she noted that many families do not have the connections she has.
MI asked if DC could consider what further actions need to be taken so the group could write to minister. MI also suggested that AG could feed into the Stolen lives campaign about her own experiences.
8. Any Other Business and closing remarks
The meeting concluded with JR noting the next meeting would be on the 13th feb.