Disabled young people: National Transitions to Adulthood Strategy Strategic Working Group minutes - June 2023

Attendees and apologies

• James Fletcher, ARC Scotland
• Scott Read, ARC Scotland 
• Tracey Francis, ARC Scotland (representing Scottish Transitions Forum Parent Carer Network)
• Michelle Wilson, Children's Health Scotland
• Esther Bates, Children's Health Scotland
• Anne Wilson, National Managed Clinical Network for Children with Exceptional Healthcare Needs
• Claire Vekic, Colleges Scotland
• John Urquhart, COSLA
• Sam Nicholson, Education Scotland
• Marianne Scobie, Glasgow Disability Alliance
• Sophie Lawson, Glasgow Disability Alliance
• Rob Gowans, The Health and Social Care Alliance
• Una Macfadyen, National Managed Clinical Network for Children with Exceptional Healthcare Needs
• Edwin Jesudason, NHS Lothian (representing adult health)
• Jenny Miller, Promoting a More Inclusive Society (PAMIS)
• Gavin Cobb, Royal College of Paediatrics and Child Health
• Fiona Burns, Scottish Funding Council
• Beth Kirby, Scottish Government
• Sarah Lawson, Scottish Government
• Rachel Bell, Scottish Government
• Carol Lee, Scottish Transitions Forum Parent Carer Network
• Fergus McMillan, Skills Development Scotland
• Mark Smith, Social Work Scotland
• Laura Kerr, Social Work Scotland

Apologies

• Lucy Johnson, Children in Scotland
• Lee House, ILF Scotland
• Jo Derrick, Scottish Throughcare and Aftercare Forum (Staf)
• Claire Bannister, Universities Scotland

Items and actions

Welcome and review of previous meeting minutes and actions

RB welcomed attendees, recapped actions from previous meeting and noted potential updates to group membership to include college sector representation at practitioner level. RB reminded members all meeting invites until August 2023 have been issued.

RB shared the agenda and outcomes for this meeting:

• to continue to develop a Statement of Intent for the strategy setting out the scope, vision, aims and priorities
• to discuss and confirm the work plan for June 2023 - December 2023, including opportunities for stakeholder engagement within this period

Updates 

SL shared - and invited the group to share - updates since the last meeting, which included:

• web page for this group is now live, with the Terms of Reference and minutes of previous two meetings published
• The Education, Children and Young People Committee wrote to Scottish Ministers and the Member in charge in respect of the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill
• ARC Scotland have published the Impact Report from the Principles into Practice trial
•  JU shared COSLA have met with Pam Duncan-Glancy MSP Member’s Bill Team and have agreed to work with ADES to provide more detail for the Bill’s Financial Memorandum
• JM shared details of the engagement work undertaken by a sub-group of DCYPAG, including PAMIS, to support the meaningful engagement of disabled young people whose needs are complex and whose voices are seldom heard, and their families

• MS shared details of Fife Council’s transitions work as part of the GIRFE pathfinders. ‘Journey maps’ including stakeholders experiences of transitions have been submitted to Scottish Government GIRFE colleagues. RB suggested linking with ARC Scotland to discuss connections with Principles into Practice

Strategy - statement of intent 

SL reminded the group our conversations are being used to draft a Statement of Intent, which we aim to share with the group for further comment in July 2023. This statement will set out our commitment and context for the strategy, and proposed scope, vision and high level priorities. We hope to publish this Statement in September 2023 before testing it more widely. 

SL recapped on feedback from the group at the previous meeting, and shared a revised definition of ‘transition’ based on this. Whilst some members of the group supported the revised definition, particularly commending reference to ‘every’ area of life and echoing the language of self-directed support (choice and control), further feedback suggested referencing some specific support networks and services that young people may encounter e.g. adult health providers and peer support (for young people and their parent carers).

SL shared the Scottish Health Survey. One of the questions in this survey asks about living with a long term condition which limits day to day activity. Using this data from those who responded in 2021, it estimates that approximately 17% of 14-26 year olds could be classed as disabled under this data collection method.

To ensure as broad a scope as possible, SL proposed the Equality Act 2010 definition of disability for use within the strategy and sought feedback from the group which included: not all young people identifying as disabled by this definition but who would still experience difficulty in transition; and concern over whether this would include neurodiversity and autism.

Members discussed the social model of disability and Capability Theory, and suggested considering the definitions and scope of other Acts and policies, in particular the Learning Disability, Autism and Neurodiversity Bill and policies relevant to hearing and seeing-impaired people. The definition of additional support within the Education (Additional Support for Learning) (Scotland) Act 2004 was also suggested, but members of the group recognised this definition only exists within the education context. 

Members of the group suggested the Equality Act definition could be retained, but asked that consideration was given to including expanded detail within the Statement of Intent. 

Action: Scottish Government colleagues will consider all of the feedback in drafting the Statement of Intent.

What are we already doing? What should our focus be?

SL shared some of the existing Scottish Government strategies and action plans which already contribute to improving specific outcomes for disabled young people, some with actions explicitly linked to transitions. Based on research and engagement undertaken so far, SL proposed some areas of focus for the strategy, which are based on co-ordinating and completing the existing policy landscape and embedding the broad and widely-recognised principles of good transitions.

Further suggestions from the group included services being available and able to creatively respond to need, and young people being empowered to adopt a central role in decision making and the co-design of services. Members were also in agreement that young people and their families need independent advocacy to identify and access support. 

Action: Scottish Government colleagues to develop a Theory of Change for review by the group. 

Timescales and opportunities for engagement

RB shared an updated work plan for June – December 2023 and asked group members to highlight any existing engagement opportunities planned between October – November 2023 which we could potentially use to test the Statement of Intent amongst wider networks. 

Members of the group also suggested other organisations they felt we should engage with including: Scottish Youth Parliament; groups representing carers; and PAMIS’ family groups. One member also highlighted some disabled young people may also be care experienced, with particular transition support needs, and suggested engaging with the Fostering Network Ambassadors.

Actions:

• Scottish Government colleagues to plan possible engagements between October – November 2023, with a focus of disabled young people and their parent carers, to share with the group at next meeting

• group members are asked to consider and bring any other engagement opportunities they are aware of to the next meeting

Any other business, next meeting date and close 

Group members were invited to share any other business and JF encouraged members to sign up to ARC’s Principles into Practice and Compass celebration and launch event on 16 June 2023. SR also shared details of a three year transitions study being undertaken by Glasgow and Newcastle Universities. The study is seeking expressions of interest from young people wishing to take part.

RB closed the meeting and confirmed the next meeting date – 4 July 2023 10-11.30am.

Actions:

• SR to forward details of transitions study engagement request to Scottish Government colleagues for wider dissemination amongst the group
• Scottish Government colleagues to set up eRDM Objective Connect for sharing of documents amongst the group and deliver training for the group on how to use this platform at next meeting