Kids Brain Health projects study and strive to support transitions from toddler years through young adulthood and beyond, because families tell us the system is failing to maximize the potential of people with neurodisabilities.

In honour of the International Day for Persons with Disabilities, we highlight our researchers’ work in social determinants of health, and neuroethics, Their focus on supporting individuals as well as system-level change to support transitions resonates strongly with a top priority identified in our 2017 National Stakeholder Survey:

“We need continuity in services at key times and transition points and acknowledgement of the life-long nature of these conditions” 

It starts with the meltdown that follows an errand-packed day in and out of the car seat, or leaving the play area at the park at dinnertime. These may be transient events in the life of a child without a disability, but they’re daily fare for parents raising children with neurodisabilities, whose lives revolve around planning and adaptation.

Before Kids Brain Health investigators began looking closely at the lived experience of transition, research in this area tended to focus on what is described as “the abyss” beyond high school graduation, when access to support services and the structure and predictability of educational settings both come to an end. There are many other transitions that also happen along the way, beginning when it’s first recognized that there’s something different about the way a child is developing, and the journey involved in securing services and supports at the time of diagnosis, followed by the move to preschool, entry to elementary school and entry to high school.

“What parents tell us is that every year is a transition,” says Dr. Lucyna Lach, a co-lead of Kids Brain Health Networks’s Social Determinants of Health (SDOH) Research Group. “As a child moves from grade to grade, the players change, or if the child changes schools – there are the big transitions we think about that are documented in the literature, and then there are the ones that occur on a year-to-year basis, and even day-to-day basis.”

Understanding how families raising children with neurodisabilities experience transitions is a major focus for the SDOH team. Their goal is to mobilize evidence they gather through listening to families and exploring big datasets that look at the contexts in which families live.Their partners in this work are plentiful: healthcare, education, justice, law enforcement, corrections, child welfare, and social services, all of whom play a role in supporting children and families.

“We’ve engaged more than 50 families in Calgary and Montreal to tell us about their experiences of accessing supports during these pivotal periods,” adds Dr. Lach.

Needs Vary with Time

“Meanwhile, the nature of support that families and children need will vary across the lifepath,” says Dr. David Nicholas, SDOH co-lead. “We think about transitions as being solely temporal, but they might be more situational. They might involve an adjustment from living with a difference to receiving a diagnosis, and suddenly having one’s area of difference be problematized, or experiencing a change in family membership; or transition to living life in a new community with a diverse and unfamiliar array of services to navigate.”

Children are often diagnosed at a specialty centre, but typically receive services in the broader community, where there’s a disconnect between the child’s needs and what’s available. There are also transitions within and between service systems where access is either denied, or at best, delayed. For example, children with neurodisabilities who also have mental health issues may be bounced between the health and social service system to the mental health system. “These systems can be very siloed, and only available in specific locales,” adds Dr. Nicholas.

The discontinuities that come with adolescence are keenly felt in health care. Youths exit the pediatric realm, and suddenly confront the silo of the adult system. Previous interviews with young adults with cerebral palsy sensitized Dr. Eric Racine, co-lead of the Network’s Neuroethics Group to the experiences of youth at this transition. “What we heard from youth was that they are very much offended that clinicians would not interact with them directly [in the adult system],” he says.

It turns out that young people are very comfortable with a shared decision-making model…that goes against the common wisdom of needing to be seen as separate from their parents.

“One of the trends is to make independence in life one of the key goals,” adds Dr. Racine. “In Quebec, official legislation allows children 14+ to make some medical decisions alone. This sends a signal about how much we would need to prepare children for this, and often, they’re not even comfortable, engaging by themselves. The power disparity is so huge between clinicians and teens.

“Something that’s coming from the data we’ve collected is the that the goal of independence may not necessarily be important to the youths themselves,” says Dr. Racine. It turns out that young people are very comfortable with a shared decision-making model, even as adults. That goes against the common wisdom of youth needing to be seen as separate from their parents. IT’s not necessarily applicable for all youth with neurodisabilities, and not necessarily important to the youths themselves.”

The data, combined with the results of a scoping review of best practices in transition care, are providing the foundation or a novel ethics intervention to support health care transitions for youth with neurodisability: a personalized transition program that operationalizes tailoring plans to take into account the needs and preferences of the child or youth.

Moving From Insight to Intervention

Dr. Racine collaborated on the project with KBHN post-doctoral fellow Aline Bogossian, who did her doctoral studies in social work with Dr. Lach. “There’s a theoretical intervention in our heads right now,” he says. “It will emerge out of talking to youth with disabilities, their caregivers and their clinicians, who are stuck in this push-pull between overwrapping a kid and allowing them to fulfill their abilities, and not providing them with the ability to accomplish what they can, by failing to provide them with a safety net. Aline [has negotiated] that push-pull, documenting how it manifests.”

Doctors, who will be key partners in translating the finding into impact in clinical settings, say the finding resonate with what they experience, adds Bogossian. Members of a national interdisciplinary task force are already involved, identifying established transition programs across the country that might welcome an ethical perspective on their offerings.