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Providing integrated care for children with medical complexity in Canada is challenging as these children are, by definition, in need of coordinated care from disparate providers, organizations and funders across the continuum in order to optimize health outcomes. Medical and technological advances continue to reduce childhood mortality rates, resulting in a dramatic increase in the prevalence of children with medical complexity (CMC) (Cohen et al. Although CMC represent a small minority, they use exceedingly disproportionate and growing amounts of healthcare spending. While the amount of care these children receive is substantial, the quality of care delivered is largely suboptimal.
Traditional paradigms of complex care management have focused on a single community-based primary care provider. In 2009, the Toronto Central Local Health Integration Network (TC-LHIN), one of the 14 regional health networks in Ontario, launched a strategic initiative titled Integrated Care for Complex Populations.
Previous iterations of key workers in complex care models focused on either a single clinician, such as a nurse practitioner (Cohen et al.
The CKW is a pediatric nurse with advanced skills and education in the provision of holistic care for this population of patients. The SKW is a community care coordinator designated to provide case management services to children with complex care needs. The frequency of key workers' contact with the child and family is individualized based on the goals and service needs. A transition is anticipated, such as an agency admission or discharge, a move to the adult system, entrance to school or daycare, a move to another LHIN, a change of primary care practitioner etc. There is a change in the child or family's situation or health status that requires a review of the goals, services or care team. The right people, with the right information, doing the right things, in the right order, at the right time.
Co-created by family and key workers, this document contains salient medical and psycho-social information including an updated list of medications, care providers and appointments as well as goals of care.
The Institute for Healthcare Improvement (IHI) believes that optimization of the health system must consider the simultaneous pursuit of three aims: a better care experience for individuals, better health for defined populations and reduced, or at least controlled, per capita cost of care.
The sustainability of the model is facilitated by a number of important enablers, including alignment with policy priorities and integration at the point of care. High-level integration of care across organizations and across the cycle of care has been recognized as an important health policy priority for complex client populations.
A cardinal feature of the ICCM is a unique and voluntary integration of multiple partners across the healthcare continuum (hospital to community; hospital to hospital) who are motivated to develop a useful and sustainable model of care for CMC and replace existing models that have been perceived as suboptimal. Many of the barriers encountered in the care of CMC have served as the impetus for change and ongoing development of the ICCM. Given the number of providers, sectors and levels of care involved in effectively managing CMC, the tools and technology required to support communication and collaboration are key to enabling the seamless coordination of care. Policy barriers that are real, perceived or potential pose a threat to the delivery of coordinated, family-centred care and service. Eyal Cohen, MD, MSc, FRCP(C), is a member of the Division of Pediatric Medicine at The Hospital for Sick Children and the Departments of Pediatrics and Health Policy, Management and Evaluation, University of Toronto, in Toronto, Ontario. Cindy Bruce-Barrett, RN, BScN, MN, PMP, works in corporate strategy and performance at The Hospital for Sick Children, in Toronto, Ontario. Shauna Kingsnorth, PhD, is a member of the Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, in Toronto, Ontario.
Krista Keilty, MN, NP-Paeds, works as a nurse practitioner at The Hospital for Sick Children, University of Toronto in Toronto, Ontario.
Anna Cooper, RN, MN, works in client services at the Toronto Central Community Care Access Centre (CCAC), in Toronto, Ontario. Stacey Daub, MA, MBA, is chief executive officer of the Toronto Central CCAC, in Toronto, Ontario.

We wish to thank Betty Winsor-Stallan, Mary French May, Suzanne Breton and the other members of the ICCM project team for their contributions to the development of the model and the ideas expressed in this paper. The evaluation of the ICCM is being supported by the Norman Saunders Complex Care Initiative through the SickKids Foundation and from the Value and Affordability Task Force in Pediatrics through the Toronto Central LHIN. If you manage this site and have a question about why the site is not available, please contact us directly. We would very much appreciate if you could complete our site survey so that we may gain from your experiences and ensure that our future plans and enhancements target your specific needs. Many CMC are subject to prolonged and multiple hospitalizations and are often readmitted to hospital for the same underlying problem (Berry et al. This provider, usually a pediatrician or family physician, is responsible for all aspects of primary care as well as the coordination of referrals to community and hospital specialists.
This premise was fundamental to the creation of the Integrated Complex Care Model (ICCM) and has revealed some positive outcomes as observed in practice during the early stages of model implementation. The initiative's mandate was to improve system sustainability by focusing on integrated care for select high-risk populations in the system. Serving as a critical guide in helping lead the clinical care of the complex child, the CKW has comprehensive knowledge and understanding of various disease processes and the subsequent effects on these children. The SKW coordinates cross-sectoral services, makes referrals, secures relevant resources and assists families to plan and navigate the system.
One key worker may assume a more prominent role at different times across the child and family's continuum of care (Figure 3), but the family is always involved in leading care planning, decision-making and coordination. This principle recognizes that no one organization, discipline or provider can adequately meet all the needs of the chronically ill child and family. A successful model allows (and promotes) the movement of team members with the child to the multiple locations of care wherever it is provided; and that partnering organizations facilitate this by sharing resources for the seamless provision of care.
Copies of the care plan will be provided to families and placed in the health record and will be accessible to providers in a both community and hospital settings through an existing platform – the Ontario Electronic Child Health Network.
This framework, referred to as the IHI Triple Aim (IHI 2011), serves as a basis for the ICCM evaluation, which includes a combination of quantitative and qualitative methods to collect data for analysis. In particular, the creation of true value for clients and families is now increasingly being driven by incentives to find system efficiencies. The ICCM has been designed with the aim to enable children, families and healthcare providers to cross traditional organizational barriers, and to create a new cadre of empowered advocates to promote and sustain integrated care. A number of challenges remain; however, concerted efforts have been directed toward leveraging opportunities for improvement, specifically related to information management, infrastructure, scalability and family centredness.
Information management has been the biggest challenge for the key worker team and represents an issue that is common to all integration initiatives. Privacy associated with integration and information management, limited use of non-regulated providers, a lack of family-directed funding models, capitation to available services, shortages of pediatric home care providers and outdated coverage by insurance carriers have been noted as barriers impacting the ability to extend the level of community-based care that is required to keep CMC at home and in their own community. Past models and interventions built within traditional paradigms, where the focus has been on family meetings, are no longer sufficient, particularly when families are not available for a home visit due to work, school and real-life limitations. The ICCM is a promising model highlighting the potential of a true system to effectively integrate complex care delivery across organizational structures, service sectors and regional boundaries.
The TC-LHIN remains committed to integrative care efforts and has approved the expansion and ongoing evaluation of the ICCM to include 50 children by the end of 2011. Examples vary and include children with congenital or acquired brain injuries and significant medical and neuro-developmental sequelae, as well as children with multi-system conditions and associated feeding, respiratory and developmental health issues. It is now generally accepted that the notion of a single provider being armed with sufficient knowledge and access to systems of healthcare, social services and educational supports for CMC may be unrealistic and misguided (King and Meyer 2006).
CMC, specifically medically fragile or technology-dependent children, was the sole pediatric population identified among five target populations. Through inter-professional assessments, the coordination of relevant investigations, the sharing of information, the setting of mutual goals and the execution of treatment plan options in varied sectors and settings (Figure 1), the child and family are encouraged to participate and contribute in the design and plan of care based on changing needs and concerns.

The CKW carries out many responsibilities including performing telephone triage, making clinical decisions, coordinating healthcare and assisting families to plan for key transitions. The key workers are not co-located – both are housed in their own employment setting. It also acknowledges that inefficiencies commonly occur when multiple organizations independently try to tackle complex health problems in a child. This commitment, along with the foundational principles established by the ICCM, bodes well for further development and replication of the model to facilitate delivery of care as close to home as possible for diverse populations whenever integration is essential to optimal health outcomes.
Key challenges identified to date include communication and policy barriers as well as optimizing interactions with families; critical enablers have been alignment with policy trends in healthcare and inter-organizational commitment to integrate at the point of care. CMC now account for more than half of childhood deaths from medical causes outside the perinatal period (Feudtner et al.
The scope of their healthcare needs places extraordinary stress on caregivers (Raina et al. While primary care reform initiatives across Canada have aimed to provide a team-based orientation to the care of patients, these models have not concentrated on the unique needs of children, in particular those with complex health needs (Miller et al.
In order to develop a feasible, sustainable integration model for CMC within the TC-LHIN, an innovative and voluntary partnership was established engaging three organizations involved in providing care and service for this vulnerable population. This approach promotes more collaborative care management among providers and also helps build the child's and family's confidence and capacity for managing care. However, the end result of the ICCM partnership between hospitals and the community required the realignment of existing resources and led to the articulation of a two-person key worker team functioning with a family lead as part of a triad (Figure 2).
Their communication can be conducted in person, via the telephone, by secure e-mail or through an electronic portal.
For these reasons, this component speaks to the need to promote complex medical support in a variety of settings including acute care hospitals, transitional care settings and the community.
Thirty-four children and families have been enrolled in the model and will be contributing to the evaluation. Key learnings from model implementation can help inform and influence the implementation of a comprehensive, information-management solution with broad utility for providers, patients and families. The next phase of ICCM operationalization will concentrate on the engagement of the broader team to advance integration beyond the key worker dyad and a robust evaluation that will reveal specific policy and process issues impacting CMC to inform policy directions at local and provincial levels. Considerations for policy developments supporting full integration across service sectors are raised. These organizations included a children's hospital (The Hospital for Sick Children), a pediatric rehabilitation hospital (Holland Bloorview Kids Rehabilitation Hospital) and a key organization that connects children to home care and other community services (Toronto Central Community Care Access Centre).
In this model, a clinical key worker (CKW), who has a prominent focus on clinical needs, and a system key worker (SKW), who concentrates primarily on the system needs including community resources, work together with a family member who has the most direct knowledge and responsibility for meeting the child's health needs. Early indicators of success include the enrolment of 34 clients and patients and the securing of funds to evaluate and expand the model to serve more children. In one study, over half of parental caregivers reported that a family member had quit their job because of their child's health demands (Kuo et al. Coordination of care in concert with the needs of these children and their families is extremely challenging (Dosa et al.
2006) and, if not done well, leads to untimely delays, fragmented communication, medical errors (Sacchetti et al.

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