Agenda item

Karen Fuller (Director of Adult Social Care, Oxfordshire County Council) has been invited to present a report on the ongoing development of an All-Age Autism Strategy for Oxfordshire.

The Committee is invited to consider the report, raise any questions and AGREE any recommendations arising it may wish to make.

PLEASE NOTE: The report for this item is to follow and will be published as an addenda.

Karen Fuller (Corporate Director - Adult Social Care); Bhavna Taank (Head of Joint Commissioning – Live Well – Housing, Education and Social Care); Dee Nic Sitric (Chief Executive- Autism Champions and Expert by Experience); and Matthew Tait (Executive Delivery Officer, Thames Valley Integrated Care Board); attended to present and discuss the draft All‑Age Autism Strategy for Oxfordshire and the strategy’s ongoing development.

The Chair introduced the item by noting that the strategy remained in draft and that the Committee welcomed the opportunity to provide scrutiny at this stage of its development prior to its sign off at the Health and Wellbeing Board.

The Corporate Director – Adult Social Care described the strategy as having been “on quite a journey” and stressed that, while it remained draft, it represented a significant shift in approach and language. The strategy had been co‑produced across multiple organisations and that the drafting process had required repeated pauses, reflection and revision, particularly where language and framing risked reinforcing a deficit narrative.

The Chief Executive of Autism Champions and Expert by Experience provided a detailed account of lived experience and, critically, the lived experience of participating in co‑production itself. She described co‑production as a term that was frequently used but often misunderstood, and explained that meaningful co‑production required autistic people and the autistic community to be involved from the beginning and throughout delivery, rather than being consulted at the end. The experience of attending and waiting through an extended agenda had been anxiety‑provoking even though she had supportive “anchors” in the room and prior experience of attending. Small acts of reassurance (such as being approached and acknowledged in a supportive manner by the Health Scrutiny Officer), constituted practical “reasonable adjustments” and were often more impactful than large, formal interventions.

The Chief Executive of Autism Champions and Expert by Experience then addressed the broader content and direction of the strategy. She described autism as frequently “invisible” in ways that made system engagement harder, noting that autism could not be reliably inferred by appearance and that autistic presentation varied widely across individuals. She described the challenge of engaging key stakeholders and seldom‑heard voices, particularly non‑speaking autistic people, emphasising that engaging non‑speakers required time, relational practice and specialist expertise that were often difficult to secure within tight drafting timetables and constraints.

A significant part of the discussion focused on the difficulty of system engagement during the strategy’s development. The Chief Executive of Autism Champions and Expert by Experience explained that securing the right stakeholders “in a room” had been extremely difficult and described this as a recurring barrier, despite some successful engagement activity. A major engagement session at the King’s Centre had attracted high attendance from autistic people and which had been led effectively by autistic members of the working group, but she stressed that engagement remained one of the hardest aspects of delivery because the system often struggled to understand or prioritise autism as a cross‑cutting issue.

The Committee explored the strategy’s language, particularly around the framing of “treatment”. The Chief Executive of Autism Champions and Expert by Experience challenged the implication that autism itself required treatment, noting that autism was an identity and a way of being human, not an illness. The system should instead focus on reducing stigma and removing barriers created by services and environments, so that autistic people were not pressured to fit into narrow expectations that served others’ comfort rather than their own wellbeing.

Members and contributors also linked autism to wider system issues discussed earlier in the meeting, including mental health and transitions. The Chief Executive of Autism Champions and Expert by Experience stated that autism “pervaded” mental health pathways and that distress caused by unmet reasonable adjustments could present as mental health symptoms. She also stressed that autistic children became autistic adults and that the system must not allow people to “fall off a cliff” at transition points.

The Committee also heard reflections on education. The Chief Executive of Autism Champions and Expert by Experience described education as feeling separate from health, social care and mental health even though Education, Health and Care Plans were inherently multi‑system. The complexity created by differing statutory responsibilities, including that education provision was the only statutory “surface” within Education, Health and Care Plans, despite the fact that many determinants of outcomes lay in health, social care and system integration. She noted difficulties engaging some education settings and highlighted the political and structural complexity of securing system‑wide alignment.

Lisa Lyons (Director of Children’s Services, Oxfordshire County Council) joined the meeting at this point.

The Director of Children’s Services reinforced the need to keep the strategy both accessible and deliverable. Strategies should not raise expectations with commitments that could not realistically be delivered, because failure to deliver would erode trust further. Work would continue to produce a children and young people’s version in a concise, accessible format, with young people supported to shape an appropriate version of the strategy and to place it within the local offer. The role of the Parent Carer Forum was formally recognised as instrumental in organising workshops and supporting the work to reach its current draft form.

The Committee then moved into detailed scrutiny of governance and accountability. It was queried as to how much authority and “teeth” the Autism Improvement Board would have to hold partners to account if delivery stalled. The Head of Joint Commissioning – Live Well – Housing, Education and Social Care responded that the Autism Improvement Board was co‑chaired jointly with lived experience leadership and included representation from partner organisations and lived experience groups. Six implementation groups would sit beneath the Board, corresponding to six key areas within the strategy, and that each group would report up with outcome measures and Key Performance Indicators (KPIs). Where delivery was not occurring, the Board chairs would have the ability to contact relevant organisations, pursue resolution, and escalate. Escalation routes existed through wider system governance, including relevant ICB boards, joint commissioning executive arrangements and place‑based partnership structures where system partners were present.

In response, the Corporate Director – Adult Social Care distinguished between youth justice and the broader criminal justice landscape, clarifying accountability and offering assurance that children in youth justice settings were entitled to enhanced service provision, including screening and specialist support. When children were remanded they became entitled to enhanced support as children in care, and that this included screening for autism and ADHD alongside other needs, making this area potentially a “good news story” to incorporate into the strategy more explicitly.

Returning to implementation arrangements, the Head of Joint Commissioning – Live Well – Housing, Education and Social Care explained that an engagement event had been held on 4 December 2025 and that invitations to participate had been issued openly. Names were being compiled across statutory partners, lived experience communities and voluntary sector organisations, acknowledging that membership would not be perfect at the outset and would need to evolve as gaps were identified.

The Committee then discussed future‑proofing in the context of local government reorganisation and potential disaggregation. Members asked how the strategy would be protected from being lost or reset if council structures changed. The Corporate Director – Adult Social Care responded that the local authority would continue to have a legal duty to maintain an autism strategy, regardless of structural changes, and that caveats would be included as appropriate. Disaggregation could create challenges for voluntary sector organisations’ ability to operate across multiple authorities, and that hosting arrangements and mechanisms to preserve the learning and legacy of work would need to be considered actively. 

The Committee examined financial modelling and asked when financial modelling would be completed, what budgets and partner organisations would be in scope, and how affordability would be assured before final approval. The Head of Joint Commissioning – Live Well – Housing, Education and Social Care explained that much of the intended improvement should be cost‑neutral, rooted in changes to practice, communication, training and pathway working rather than new-funded provision. However, implementation planning could surface areas of genuine cost, and that financial modelling would then consider existing budgets within pooled arrangements, local authority and ICB resources and other sector contributions, with the potential to divert existing funding and seek grant funding where appropriate. Officers emphasised that the system had no additional overall money and that affordability would therefore depend on realistic scoping and prioritisation of what could be delivered. 

Finally, the discussion returned to outcomes and evaluation. The Committee asked how the system would know whether the strategy was actually achieving change beyond diagnostic waiting times, particularly in relation to reasonable adjustments, accessibility and “enabling” outcomes. The discussion linked this to the intent that an implementation plan would be reviewed annually, with actions being converted into business as usual where achieved and new KPIs set for subsequent cycles, supported by listening activity and ongoing feedback from autistic people and families.

The Committee expressed that the draft strategy represented a significant step forward, but that delivery would depend on clear governance, true co‑production in implementation (including reaching beyond representative organisations), realistic financial scoping, and a robust outcomes framework capturing both quantitative and qualitative experience.

The Committee AGREED to issue the following recommendations subject to any necessary amendments offline by the Chair and Health Scrutiny Officer:

1. That the role, authority and escalation mechanisms of the Autism Improvement Board are clearly articulated in the final strategy and/or implementation plan, including: how partner organisations are held to account for delivery of agreed actions; how under performance or delay will be escalated; and how assurance will be reported to the Health and Wellbeing Board and shared with scrutiny.

2. That co production principles are explicitly embedded in delivery, not only strategy development, including: a clear role for autistic people (of all ages) and experts by experience (from the entire community) in shaping priorities, sequencing actions and reviewing progress within the implementation plan; and clarity on how lived experience feedback will directly influence commissioning, service redesign and system decisions.

3. That financial modelling for the All-Age Autism Strategy is developed as much as is possible, including: any budgets/funding pots and partner organisations in scope; the balance between new investment and reconfiguration of existing resources; and the affordability and sustainability of priority commitments.

4. For a clear outcomes and performance framework to be developed. It is recommended that any outcomes and performance frameworks include diagnostic waiting times and access to support while waiting; consistency and effectiveness of reasonable adjustments across services; experiences of transitions; and lived experience and qualitative outcomes, not solely access metrics.

5. For system partners to work toward the development a children’s version of the Autism Strategy.