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Members of Suffolk's Lived Experience Group have criticised aspects of the county's new all-age autism strategy, claiming their input was sidelined during its development despite the council's commitment to co-production.
Why it matters: The Suffolk All-Age Autism Strategy 2024, the first of its kind for the county, aims to improve support for autistic individuals, but questions have been raised about the extent to which lived experience shaped the final document.
The big picture: While the strategy was developed with input from autistic individuals, health partners, and council representatives, some participants in the consultation process say significant changes were made without their involvement, particularly when the document was condensed from a larger draft to the published 36-page version.
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Key concerns: A subset of members from the voluntary group involved in the consultation raised the following concerns in an open letter to Suffolk County Council under the banner of the "Lived Experience Group (LXG)".
In their letter they allege:
The strategy was streamlined "without any input or consultation with autistic people," making it "not fit for purpose"
Important content about late diagnosis, burnout in later life, and intersectionality was removed
The phrase "Nothing About Us Without Us" – a longstanding disability rights principle – was included in the original draft but removed from the final version
Members' feedback was ignored for partnership board meetings despite claims they are the "foundation" of the board
Some active members stepped back due to what they describe as "continued mistreatment of autistic people"
Attempts to divide the group for individual meetings were "disturbing and show poor understanding of autistic needs"
What they're saying: In their open letter, the LXG also stated: "We remain concerned that the Lived Experience Group are being asked to share their experience and give their time for free, whilst council employees and other stakeholders are all being paid," but it should be noted that it is commonplace for local government to hire consultants who in turn work with volunteers to support their work.
The council's response: A spokesperson for Suffolk County Council defended the strategy, stating: "The All-Age Autism Strategy marks an important step forward for the county council, our health partners, and, most importantly, the wider autistic community. Its goal is to improve support across Suffolk, ensuring that autistic people and their families can lead full, safe, happy, and healthy lives."
The spokesperson acknowledged that "some members of the Lived Experience Group, who were actively involved throughout the development of this strategy, feel disappointed that not all their requests were included from the outset," adding: "We believe that any strategy should not only be ambitious but also achievable."
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Suffolk and North East Essex has seen a dramatic rise in autism assessment waiting times, with just 2% of long-wait patients receiving appointments.
Wider context: The strategy was developed using a partnership approach involving multiple agencies, including health services, and was developed through consultation with various stakeholders. As Suffolk's first All-Age Autism Strategy, it is designed to establish foundations that can be built upon in future iterations.
What's next: The LXG members behind the letter have indicated they plan to bring what they describe as Suffolk County Council's "inaction to media attention" and create an online resource documenting what they see as a "lack of meaningful progress following the extensive and costly consultation process."
The bottom line: This dispute reveals contrasting views of co-production – while the council sees it as collaborative input toward achievable outcomes, some autistic advocates expect deeper involvement in final decisions that shape strategies and policies affecting their lives.
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