Disabled young people: National Transitions to Adulthood Strategy Strategic Working Group minutes - January 2024

Attendees and apologies

• Anne Wilson, National Managed Clinical Network – Children with Exceptional Healthcare Needs
• Claire Vekic, Colleges Scotland
• Cols Young, Glasgow Disability Alliance
• Craig McDonald, Scottish Transitions Forum Parent Carer Network
• Dr Edwin Jesudason, NHS Lothian – representing adult health
• Eilidh Fulton, Scottish Funding Council
• Fergus McMillan, Skills Development Scotland
• Gavin Cobb, Royal College of Paediatrics and Child Health
• Gemma Richardson, Royal College of Paediatrics and Child Health
• Iain Wilson, Independent Living Fund Scotland
• James Fletcher, Association for Real Change (ARC) Scotland
• Jenny Miller, Promoting a More Inclusive Society (PAMIS)
• Karen Albrow, Scottish Transitions Forum Parent Carer Network
• Marianne Tyler, the Health and Social Care Alliance Scotland (The ALLIANCE)
• Mark Smith, Social Work Scotland 
• Rachel Bell, Scottish Government
• Sam Nicholson, Education Scotland
• Sarah Lawson, Scottish Government
• Scott Richardson-Read, Association for Real Change (ARC) Scotland
• Tracey Francis, Association for Real Change (ARC) Scotland
• Una McFadyen, National Managed Clinical Network – Children with Exceptional Healthcare Needs

Apologies

• Beth Kirby, Scottish Government
• Chris Ross, Children in Scotland
• Frances Foreman, Education Scotland
• John Urquhart, COSLA
• Laura Kerr, Social Work Scotland
• Mairi Macpherson, Scottish Government
• Michelle Wilson, Children’s Health Scotland

Items and actions

Welcome and review of previous meeting minutes and actions

RB welcomed attendees, noted apologies and shared details of departing group members - SL, depute for the Glasgow Disability Alliance and SC, New College Lanarkshire. KW replaces SL on the group, and members agreed not to replace SC in order to maintain stable membership. AMS will continue to represent college practitioners on the group.

The group thanked both departing members for their invaluable contributions, and wish them all the best for the future.

The meeting agenda and outcomes were shared:

• share key feedback themes from analysis of engagement on the Statement of Intent
• review the scope, vision and the priorities for the Strategy in light of this feedback

Group Updates

SL invited group updates and shared the following:

• the Scottish Government are working with The Lines Between (TLB) to conduct an evaluation of clients’ experiences of moving from Child Disability Payment to Adult Disability Payment. TLB are keen to hear from organisations that have supported clients with this. Members should contact Ian Christie if interested 
• the independent analysis of responses to the consultation on ‘A Human Rights Bill for Scotland’ has now been published 
• the Independent Review of Community Learning and Development launched two online surveys seeking the views of Community Learning and Development learners (and potential learners) and of practitioners/wider stakeholders 

JF noted the publication of the ARC Scotland’s Interim Compass report and shared a link to the Compass website. ARC expect to publish a full report on Compass in July. SN added that the Divergent Influencers and ARC are delivering a session on Compass for practitioners to the National Complex Needs Network on 19 February.

UM asked who should be co-ordinating the transitions planning and support for young people who aren’t attending school. SN encouraged UM to approach the local authority for advice on who this should be.  

JM and IW echoed UM’s concerns and expressed that this can be difficult in practice, which they attribute to lack of educational input if a young person isn’t attending school and a shortage of social work staff. IW shared details ILF’s person-centred planning grant which is currently open.

Later in the meeting, JM noted that PAMIS are meeting with the Scottish Learning Disabilities Observatory (SLDO) to discuss holistic approaches for people with profound and multiple learning disabilities (PMLD), including proposals on a PMLD hub.

Statement of Intent – feedback themes and review sections

SL recapped the number of responses to the Statement of Intent and some feedback received, including the percentage of respondents who agreed or strongly agreed with each of the questions in the survey:

• do you agree that the meaning we have given to ‘transition to adulthood’ is the correct one for the strategy? 96%
• do you agree that the meaning we have given to ‘disabled young people’ is the correct one for the strategy? 90%
• do you agree that the vision is correct for the strategy? 86%
• do you agree that the priorities are the correct ones for the strategy? 87%

RB reiterated that definitions are important in order to make clear the improvement focus of the strategy. In relation to the proposed definition of ‘transitions to adulthood’, RB led a group discussion on the qualitative feedback received, which included:

• agreement the Strategy should have a broad age range which flexibly accommodates individuals’ stages of development and unique needs
• the potential unintended consequence of creating a cut-off of support by presenting any age range

Group members agreed that transitions planning should start early (14 or earlier), with one member expressing the lower age within the range was more important than the upper threshold. Members noted it can be difficult to engage all relevant professionals in planning discussions if the young person doesn’t yet meet the eligibility criteria for their service to receive them. The Group discussed challenges within the transition from children to adult health services which RB agreed to discuss further with relevant policy colleagues.

On the proposed definition of ‘disabled young people’, SL shared some of the feedback received, including:

• the social model is welcomed, but often does not translate in practice for young people trying to access services and support for transitions which require a formal diagnosis. Long waiting times to secure a diagnosis have a knock-on effect on this
• not all young people e.g. those who are deaf or neurodiverse, may identify with the terminology of disabled
• inconsistent language is used across the policy and legislative landscape e.g. Additional Support Needs, Special Educational Needs, disabled
• greater clarification is required for parents on how this policy interacts with – or affects – others e.g. benefits and guardianship

RB reiterated that the proposed definition is to provide clarity to the improvement focus of the strategy. RB reminded the group why we hadn’t proposed ‘Additional Support Needs’ (ASN), as this terminology is exclusive to the education context and includes a much broader cohort of young people which fall out with the improvement focus of this particular policy.

Members of the group agreed it is important to encourage support for transitions which follows a needs-based model as opposed to the medical model. The group did, however, recognise the practicality that some services rely on diagnosis. 

The group discussed the terminology of ‘complex needs’, as it appeared to be used interchangeably in the feedback in relation to learning disabilities, cognitive development, life-shortening conditions, and young people who interact with multiple health and care specialisms.

UM reflected the strategy must start somewhere and suggested using agreed terminology and reviewing its impact. SR suggested using the Equality Act definition, giving a list of what this strategy considers this would include in light of the feedback e.g. neurodivergence, deafness, complex needs etc. then referring to the ‘young people impacted by the strategy’ and not ‘disabled young people’ throughout the duration of the document.

In relation to the proposed vision statement, SL shared feedback which included:

• balancing the ambition of the vision with the reality of available options
• greater reference to the role of parent carers
• concerns around whether the vision statement sufficiently takes account of young people with life-shortening conditions and complex needs, some of whom may lack capacity for decision making

RB reminded the group that the vision statement was based on the voices of three groups of young people – the Divergent Influencers; the Young Ambassadors for Inclusion; and the Inclusion Ambassadors, and also included the aspiration of sibling carers.

The group discussed the broad spectrum of needs and aspirations of ‘disabled young people’, and how balance this with realistic expectations. RB suggested an approach was for the original groups of young people to review the vision statement in the context of the feedback received, which SR welcomed. Another suggestion was to incorporate more of the language from GIRFEC, the National Performance Framework and UNCRC around fulfilling potential. SR suggested greater alignment with UNCRC could help reinforce statutory duties.

Many group members agreed that the role of the parent carer needs strengthened, as parents are integral to achieving the ambition of the vision, particularly for those young people who lack capacity to articulate their own aspirations. JM suggested the work of the DCYPAG Engagement Sub-group could help illustrate this. UM noted that What Matters to Me and Future Planning also outlines common themes in relation to aspirations.

Next steps, any other business, and close

RB noted the next meeting will cover feedback on the proposed priorities, as the group didn’t have time to discuss at this meeting The meeting will also focus on developing outcomes for each of the priorities. RB also shared proposals for conducting solution-focused sessions as part of the wider engagement in spring to develop the actions required, and asked the group to consider how they can contribute to this. EJ stressed it was important to bring adult services, including adult health service, representatives into this phase of engagement.

RB highlighted that the next date for the group is Thursday 29th February from 14:00-15:30 and closed the meeting.

Actions:

• officials to review the definitions in the Statement of Intent within the context of the discussion as minuted
• IW to share Independent Living Fund’s criteria and definitions
• UM to share any relevant discussions from RCPCH’s new 'Children with Medical Complexity' group
• officials to review the Statement of Intent vision statement in the context of the discussion as minuted
• officials to resume discussions with young people’s groups leads around redrafting the vision statement
• group to consider strategic outcomes under each of the Statement of Intent priorities and bring for discussion at next meeting
• group to consider possible engagement opportunities to bring for discussion at next meeting
• meeting slides to be shared alongside minute