Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities

Abstract

ASD Autism spectrum disorder RCH Royal Children's Hospital AIM First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co-existing mental health disorders (often termed 'dual disability'), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities. METHOD Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care. RESULTS Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs.

Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities

“…The Fearless, Tearless Transition model was developed in consultation with carers and professional stakeholders involved in the care of adolescents with a dual disability (Culnane et al, 2021) and remains in operation at the RCH. This model aims to achieve a family‐centred approach with early, purposeful planning to reduce variation in transition practice and to enable greater connectivity to appropriate services.…”

“…The development of a transition to adult care model, Fearless, Tearless Transition , was described in a previous publication (Culnane et al, 2021). This paper presents the perspectives of carers of adolescents with dual disabilities who participated in this model of care.…”

Do demographic, and clinical characteristics influence meeting NICE quality standards for young people transitioning to adult intellectual disability services?

“…Transition to adult services is recognized to be difficult for young people and their families, with some of the problems identified being poor communication between services (Gauthier-Boudreault et al,2021;Culnane et al,2020;Brown et al, 2019;Franklin et al, 2019), a relative lack of appropriate adult services (Piccoli et al, 2020;Culnane et al, 2020; (Information about the authors can be found at the end of this article.) Shanahan et al, 2020), difficulty in accessing adult services due to restrictive access criteria (Young-Southward et al, 2017;Belling et al, 2014;Barron et al, 2013) and loss of integrated health care (Brown et al, 2019).…”

“…Transition to adult services is recognized to be difficult for young people and their families, with some of the problems identified being poor communication between services (Gauthier-Boudreault et al ,2021; Culnane et al ,2020; Brown et al , 2019; Franklin et al , 2019), a relative lack of appropriate adult services (Piccoli et al , 2020; Culnane et al , 2020; Shanahan et al , 2020), difficulty in accessing adult services due to restrictive access criteria (Young-Southward et al , 2017; Belling et al , 2014; Barron et al , 2013) and loss of integrated health care (Brown et al , 2019). Sloper et al (2010) in their wide-ranging study of the impact of transition teams on the effectiveness of transition for young people found a high level of unmet need including factors impacting on mental health.…”

Transition to adulthood for individuals with autism: addressing the knowledge gap

“…He was intrigued by the model put forward by Culnane et al 1 The ‘Fearless, Tearless’ model is designed to mitigate the gap in knowledge that comes with the transition to adulthood, to create ‘a process of shared care between paediatricians and general practitioners and to assist with the coordination of care’. This model of medical care is much needed.…”