Parents of children with neurodisabilities must find their way to and through multiple systems of support and care in the public and not-for-profit sector. These systems exist within and across various sectors (education, health, social services), and involve professionals and para-professionals from similarly diverse disciplines. It is well known that these systems operate in silos, and there often is little incentive for collaboration.
Nicholas and Lach’s research identified that parents often need support in framing what their child’s needs are relative to support access, and in getting to the right systems of support. They have brought together key stakeholder organizations in Vancouver BC, Whitehorse Yukon, Edmonton Alberta, and Montreal Quebec, to begin to develop a collective understanding of how families experience accessing services and the kind of challenges and barriers that families as well as systems face in receiving/providing what is needed.
These communities have begun to map their assets related to navigational support for families, and to develop a shared vision of what needs to improve and how jurisdictions and service systems can work together to better achieve improved navigation pathways. Drs. Nicholas and Lach will discuss what they have learned about improving navigation and how collective community impact can be used to bypass inertia and barriers to system change.
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Dr. David Nicholas, PhD, RSW
Dr. Nicholas is a professor in the Faculty of Social Work, University of Calgary (Edmonton Division); and is cross-appointed to the Department of Pediatrics, University of Alberta. His research addresses quality of life, employment support and transition in disability, family support, parenting and family-centred care in neurodisabilities.
Dr. Nicholas has founded the Vocational Abilities Innovation Lab in the Faculty of Social Work which seeds studies in developmental disabilities and employment. He holds multiple national grants with a focus on nurturing quality of life among people with neurodisabilities. Dr. Nicholas has worked internationally in building autism service capacity, and with Dr. Lach, co-leads an inter-provincial/territorial initiative seeking navigational advancement.
Dr. Lucyna Lach
Dr. Lach is an associate professor in the School of Social Work and an associate member of the Departments of Pediatrics, Neurology and Neurosurgery, Faculty of Medicine, McGill University. Her program of research focuses on the quality of life of children with neurodisabilities and their caregivers (i.e. caregiver health, and parenting).
Dr. Lach’s current projects address social determinants of health of children with neurodisabiltiies. She is co-leading a team of researchers and trainees whose projects have been funded by Kids Brain Health Network (KBHN) and the Social Sciences and Humanities Research Council (SSHRC) to document determinants such as income, service use, educational outcomes, and uptake of income supports such as the Disability Tax Credit using population-based as well as administrative and clinical databases. She is also collaborating with Dr. David Nicholas to increase capacity in navigation systems that support families of children with neurodisabilities in Vancouver, Edmonton and Yellowknife.
In addition, she is part of a recently funded Strategic Patient-Oriented Research (SPOR) Team entitled CHILDBRIGHT, and is co-leading (along with Dr. Patrick McGrath) development and implementation of a randomized controlled trial entitled Strongest Families – Neurodevelopment. This project is evaluating a web-based program that combines group coaching and educational modules, with parent-to-parent support for parents whose children have a neurodisability and mental health concerns. Dr. Lach is a peer-reviewer for numerous journals and organizations that provide research funding.