Pass the parcel: Service provider views on bridging gaps for youth with dual diagnosis of intellectual disability and mental health disorders in regional areas

Abstract

Aim Youth with both intellectual disability (ID) and mental health (MH) disorders (dual diagnosis) have complex physical and MH needs that can make providing integrated care for this complex group challenging. We conducted a mixed methods needs assessment to identify gaps and challenges in care delivery, identify bridges for these and identify what works well in existing services. Methods Our research team recruited service providers (n = 126) caring for youth aged 14–24 years with a dual diagnosis in the Illawarra Shoalhaven region of New South Wales, Australia, to participate in focus group interviews. Data were transcribed and analysed thematically. Results We identified six themes related to caring for youth with dual diagnosis in regional areas: access to services and information about services, communication between service providers and with clients and carers, the divide between MH and ID, early intervention and health promotion, capacity building of service providers and capacity building of clients and carers. Across these themes, service providers highlighted the transition from child to adult services as a particularly challenging time for clients, families and carers. Conclusions Our data suggest several approaches to break down silos and to facilitate collaboration between current services for youth with a dual diagnosis, including increasing specialised ID/MH services and building the capacity of current disability and MH service providers. Our results provide important information to provide quality and integrated care for youth with complex health needs.

Preparing a workforce across sectors: staff experiences of developing an Australian first, mental health and intellectual disability initiative for youth (MHIDI-Y)

“…From a service perspective, there is a traditionally siloed approach in working from the perspectives of mental health and ID, with services often not offering co-ordinated mental health and ID support (Son et al , 2018). Effective collaboration can be further hindered by the differing funding sources and systems of governance between the health and disability sectors (Williams and Smith, 2014).…”

“…A recent study into the barriers to providing support for youth with dual disability identified a number of challenges in service provision. Son et al (2018) found that there was difficulty in accessing services due to: a lack of targeted specialist services; long wait times; lack of knowledge about which services existed; and relevant eligibility requirements. Another identified barrier was the lack of effective communication and collaboration between services.…”

“…This theme also emerged when using separate mental health and ID services, with both having separate admission criteria and working from different frameworks that did not converge with each other. The study also found that there were minimal early intervention services for dual disability clients, and there was a need for more parent and carer support in existing services (Son et al , 2018).…”

Exploring how the diagnostic process stratifies children with intellectual disability navigating the service system in Ontario, Canada

“…To explain, children with intellectual disability experience a higher prevalence of mental health disorders (Einfeld et al, 2011; Hughes-McCormack et al, 2017), challenging behaviours (Emerson, 2003; Emerson et al, 2014), dental disease (Diéguez-Pérez et al, 2016), and obesity than children without intellectual disability (Maïano et al, 2016; Segal et al, 2016). Additionally, people with intellectual disability, across the lifespan, are often excluded from or experience barriers to accessing mainstream health promotional and illness prevention initiatives (Hanlon et al, 2018; Ouellette-Kuntz et al, 2005; Son et al, 2019). Service navigational barriers may prevent the needs of children with intellectual disability from being met and thus prevent children with intellectual disability from opportunities for health and well-being comparable to their counterparts without intellectual disability (Kiernan et al, 2017; Roebuck et al, 2008).…”

“…This finding brings into question the ‘appropriate[ness]’ and effectiveness of primary care providers’ care of children with intellectual disability. Indeed, carers in various studies perceived that their child’s primary care provider did not effectively communicate with them or with other service providers, lacked knowledge about their child’s disability, needs, available services; and were unable to address the carers’ concerns (Betz et al, 2004; Bogenschutz, 2014; Minnes and Steiner, 2009; Phelps et al, 2012; Reichard et al, 2004; Son et al, 2019). Minnes and Steiner (2009) found that carers of children with intellectual disability who perceived that their primary care provider lacked knowledge and interest about their child’s needs were ‘left to their own devices’ (p. 252) to determine and locate which services their children required.…”