Angelman syndrome (AS) is a rare congenital disorder characterized by impairments in intellectual, neurological and motor functioning and a postulated behavioral profile. This study compared behavioral characteristics of 62 individuals with genetically confirmed AS and 29 individuals with presumed AS from clinical features, with a control group of young persons with intellectual disability (ID) derived from an Australian epidemiological register. Twelve behavioral items from the developmental behavior checklist (DBC) were used for this comparison. The groups were matched for chronological age, gender, and level of ID. In the AS group, significant differences were found for 10 behaviors, with poor attention span and impulsivity being less common, and overactivity/restlessness, chewing or mouthing objects, eating non-food items, gorging food, food fads, fascination for water, hand flapping and sleep disturbance being more common. Interestingly, there was no difference in prevalence of unprovoked laughter. Comparison of the results of the genetically confirmed with the genetically unconfirmed AS cases showed no significant differences between individual behavior prevalence. These findings show that a "behavioral phenotype" of AS can be distinguished from others of similar level of ID, but it is different from that hitherto published. Abnormal food related behaviors, hyperactivity, fascination for water, hand flapping, and sleep disturbance should be included in a "behavioral phenotype" for AS. Apart from hyperactivity, "ADHD-type" behaviors are not more characteristic of AS than in ID generally. Therefore, the Consensus Criteria for the diagnosis of AS need to be reviewed.

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.

Objective: People with intellectual disability (ID) frequently have multiple co-morbidities requiring a complex network of supports. Integrated care is essential to optimize outcomes and minimize adverse events such as unnecessary hospitalisation, but access to specialized expertise can be particularly challenging for underserved and rural/remote regions. The goal of the MRID network project is to pilot an innovative service model that would leverage existing resources to improve access to coordinated specialist health services for children, adolescents and adults with ID in regional areas of New South Wales (NSW), Australia. Methods:The MRID network project was funded by the NSW Government's Ministry of Health. We adopted a partnership approach including local needs analysis and ongoing formative evaluation to ensure the co-production of a specialist service model meeting the changing needs of consumers, carers, and local government, non-government, health, disability, mental health, and education services. A hub-and-spoke service model was combined with telemedicine support. Key features included:• A multidisciplinary team of paediatric, medical, psychiatric, specialist nursing and allied health staff providing access to range of specialised services• A co-design model engaging local stakeholders from government and non-government sectors to provide readily accessed, client-centred, holistic, coordinated care complemented by family and carer support• Capacity building of local services through provision of educational resources, specialist support and networking World Congress on Integrated Care 2014, Sydney, November 23-26, 2014.

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