Improving the quality of life for children with neurodevelopmental disabilities
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Improving the quality of life for children with neurodevelopmental disabilities
Chief Executive Officer of the Kids Brain Health Network
Ten to seventeen percent of all children in Canada live with a neurodevelopmental disability such as Autism, Fetal Alcohol Spectrum Disorder (FASD), or Cerebral Palsy. The majority experience limitations that impact their quality of life.
The early phases of brain development before and in the first few years after birth are critical. The ability to have early diagnosis and access to early treatments for children will have the most significant impact on their development. While there may be no cures, early diagnosis, timely interventions, and societal support can substantially improve the lives of children with a neurodevelopmental disability and their families.
Kids Brain Health Network (KBHN) is a not-for-profit, federally funded Network of Centres of Excellence hosted by Simon Fraser University, that focuses on mobilizing the knowledge generated by research to improve outcomes for children and families impacted by neurodevelopmental disabilities. Since 2009, KBHN has been collaborating with researchers, community groups, non-profit organizations, industry, parents, clinicians, health professionals and government partners to help children with a neurodevelopmental disability enjoy quality of life, inclusion in all aspects of society and to reach their full potential.
Now entering its twelfth year, KBHN is focused on implementing and embedding into health systems and practice, evidence-based projects that can and have made a real difference in the lives of children with neurodevelopmental disabilities. Each project is focused on one or more of the following: early identification, early intervention and family support.
Focusing on what matters
What makes KBHN unique is its focus on mobilizing evidence based research and getting this to those who need it. Early identification and diagnosis are critical first steps towards treating neurodevelopmental conditions and to access the services and support that families need. Research funded by KBHN helps provide solutions to key challenges faced by children and their families, breaking down barriers to access and enabling early treatment and support.
“The sooner we can identify a neurodevelopmental disability and those children at risk, the sooner we can provide support and treatment or therapy”, says Nicky Lewis, Chief Executive Officer (CEO) of KBHN. “This has involved building partnerships with families, community service providers and key policymakers. The more we understand brain development, the more we can provide effective and impactful interventions and services”.
However, the child is not the only person affected by a neurodevelopmental disability. Parents, caregivers and siblings often do not know how best to support their loved ones. They may not be aware of how to access, or struggle to access, the best and most appropriate services that are available. Families raising children with neurodevelopmental disabilities face challenges that affect almost every aspect of their lives, and these challenges have been exacerbated during the current pandemic.
“Social isolation, disruption to a regular routine, lack of access to support, therapy and treatment services can have dramatic consequences on children and youth with neurodevelopmental disabilities”, says Lewis. “Research funded by Kids Brain Health Network is identifying the most effective strategies to support parents and caregivers to reduce family stress, improve communication, and access resources that help their children realize their full potential, especially during the COVID-19 pandemic”.
By engaging with families and children with neurodevelopmental disabilities, KBHN research is informed by their needs and focused on finding solutions that meet those needs, improve availability and ensure tangible impact. KBHN projects are designed such that they can be implemented and mobilized for the broader community.
Impactful research for healthier kids
KBHN has a broad portfolio of research programs, including ones that focus on early identification, such as the Genomic Assessment Tool and the Infant and Early Mental Health Hub (IEMH). Other projects, Better Nights, Better Days, Dino Island and Social ABCs™, focus on early intervention and effective treatment, and three initiatives, the Fetal Alcohol Resource Program (FARP) and Kids Action Coaching (KAC) Program and Integrated Navigational Resources Program, are designed to build social and family support. Here is a quick breakdown of each of these activities:
Genomic Assessment Tool – The tool is based on epigenetics that allows for early identification of infants and young children at-risk for FASD to help earlier diagnosis and facilitate access to support systems.
Infant and Early Mental Health Hub (IEMH) – A hub that combines an Indigenous way of knowing, learning and being with western ways to develop pathways of care. This includes access to training, coaching, various tools and resources and cutting-edge practices specific to infant and early mental health to improve developmental outcomes.
Better Night Better Days – A behavioural eHealth intervention to increase and encourage healthy sleep behaviours for children with a neurodevelopmental disability. This is the first trans-diagnostic eHealth program created to support these children and their families.
Dino Island – A serious cognitive intervention tablet-based game designed to improve the attention, memory, self-regulation and emotional control and teaches critical problem-solving strategies to children with neurodevelopmental disabilities. The program is accessible and can thrive in a wide range of settings such as school and home.
Social ABCs – An intervention program that targets 18-30-month old children with social-communication challenges or early signs of autism. A trained parent coach guides parents to help develop communication skills through everyday activities. The program supports the development of improved verbal capacity, social initiation and peer engagement.
The Fetal Alcohol Resource Program (FARP) – A community partnership focused on supporting individuals & families affected by FASD by facilitating access to regional services and professional consultation. The program also delivers training for professionals on FASD to increase knowledge and improve strategies across many sectors such as justice, education, health, housing and community services.
Kids Action Coaching (KAC) Program – This intervention addresses social isolation and lack of opportunities to engage in community recreation opportunities. The program in partnership with Special Olympics is child-centred, need-based and goal-oriented. It engages the whole family around the child by promoting access to, and inclusion in, community-based physical activity programs.
Advancing Navigation – The Integrated Navigational Resources program makes it easier for families to find and access supports and services. The project currently has three unique sites—Vancouver, Edmonton, and the Yukon. The program working with local partners who are identifying a range of resources and strategies for developing a coordinated and comprehensive network of services and navigational processes for families in the three regions. It is envisioned that the It is envisioned that this strategy will improve current navigational systems by making them coordinated, person and family-centred, and build capacity across the continuum of care across sectors (education, health, social services) and in collaboration with NGO’s. Learnings from the project will generate a ‘navigational systems’ blueprint for other communities that can be adapted to address their local needs.
Nicky Lewis explains that “Projects such as these have the potential to make a profound difference in the lives of children and youth with neurodevelopmental disabilities and their families. Looking forward, KBHN is focused on working with its many partners in the community and government to develop more initiatives that address the current needs of children and their families”.
Coping with COVID-19
The COVID-19 pandemic has created enormous challenges for society at large, but for children with neurodevelopmental disabilities and their families, these challenges have had a disproportionate impact.
A major concern for parents has been obtaining accurate information about COVID-19 and the impact on their child’s neurodevelopmental disability. That’s why KBHN, in partnership with CanChild and the CHILD-BRIGHT Network, created the #MyCOVIDDisabilityQ social media campaign.
“MyCOVIDDisabilityQ encourages Canadian children and youth with disabilities, their parents and other family members and caregivers, to ask questions that relate to both their disabilities and the COVID-19 outbreak. The increased environmental stress on these families has been considerable”, says Lewis.
Questions are submitted via an online form, and a health expert such as a doctor, psychologist or researcher, answers the questions on the @MyCOVIDQuestion Twitter using the #MyCOVIDDisabilityQ hashtag so that anyone can access the information. We are investigating effective ways of reaching out to those families without easy online access.
“It’s these types of initiatives that make KBHN so effective”, says Lewis. “We are able to respond nimbly and effectively to a crisis situation. We listened to the concerns of families, then we adapted and collaborated with our partners and researchers to ensure that these children are not left behind and are part of future conversations”.