Early intervention for children and young people with neurodevelopmental conditions and intellectual disability: “The Getting Help” offer for Northwest England

Abstract

Purpose

The purpose of this paper is to outline what early support should be offered to children and young people with neurodevelopmental conditions including those who are autistic or have intellectual disability. A review of all child and adolescent mental health services (CAMHS) services in the Northwest completed by NHS England and Improvement (Doyle and Ryan, 2021) found that there was no clear Tier 2 offer (for mild to moderate mental health issues) for autistic children and young people or for those with intellectual disability. Following this review, a project group that had developed a model for mental health services for autistic children and young people and for those with intellectual disability (Wee et al., 2021) was tasked with articulating the “Getting Help” offer for children and young people with neurodevelopmental conditions, including intellectual disability.

Design/methodology/approach

A working group was created consisting of professionals from mental health, education and local authority and lived experience representatives of coproduction partners. A brief review of the background literature was also conducted. Six meetings were held to create a framework for the “Getting Help” offer and to discuss what the offer should be based on professional expertise and lived experience.

Findings

Recommendations for the Getting Help multi-agency offer included pre- and post-assessment support as part of a single attention deficit hyperactivity disorder/autism/neurodevelopmental pathway, community support for children with intellectual disability, access to adapted mental health support and the need for early recognition and support for avoidant and restrictive food intake disorder. Key themes from working group discussions included the reduction in the quality of services experienced by children and families due to silo working, which increased the risk of falling between multi-agency services and led to early signs of neurodevelopmental needs, or mental health issues being missed. Another theme was aiming for equity of access and outcomes.

Originality/value

This work is a response to a coproduced review of CAMHS in the Northwest and incorporates the lived experience of young people and families. It also adopts a holistic multi-agency neurodevelopmental approach rather than focusing on a single diagnosis or service.

Citation

Wee, C., Jaydeokar, S., Ugwuonah, C., Armstrong, L. and Odiyoor, M. (2024), "Early intervention for children and young people with neurodevelopmental conditions and intellectual disability: “The Getting Help” offer for Northwest England", Advances in Autism, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/AIA-10-2023-0066