Earlier this month, The Federation made two written submissions to the Select Standing Committee on Children and Youth—one by our Executive Director, Rick FitzZaland and one by our Director of Programs and Services, Rebecca Ataya Lang. Both were in response to the committee’s Special Project on Children and Youth with Neuro-diverse Special Needs and both are being shared with Federation members who may want to read what was said and use some of our messaging in their own submissions. Below is Rick’s submission. You can read Rebecca’s here.
Submission to the Select Standing Committee on Children and Youth
Special Project on Children and Youth with Neuro-diverse Special Needs
Thank you for the opportunity to participate in this special project and contribute my experience and ideas to the important work of this committee. I have a Master’s Degree in Special Education that included a focus on strategies for children and youth with neuro-diverse special needs. During my career, I have set up clinics and programs for children and youth with special needs and I am the Executive Director of The Federation of Community Social Services of BC where I work to support and advocate on behalf of social services organizations across the province, many of whom provide services to children and youth with special needs. But my best education in this area has been as a foster parent for over two decades for children with neuro-diverse special needs and, later, as an adoptive parent for two boys (who are now young adults) with complex neuro-diverse special needs.
My education, my career, and my personal life have provided me with many stories and ample insight into the system of care that young people with special needs and their families have to navigate. In my experience, those systems fail—in every category—far more than they succeed. It is only by the grace of God, a very fortunate accident, or the most fierce and unrelenting determination of an unyielding parent or a committed social worker or teacher that children with neuro-diverse special needs are identified, monitored, and referred for the services they actually need. There are many systemic problems that need to be addressed, but they won’t or can’t be solved unless these young people are seen and understood and treated as unique individuals, rather than categories on a form or line items on a budget.
In my experience, children and youth with neuro-diverse special needs, more often than not, face the longest possible wait time to get a referral, the easiest or most convenient diagnosis, and the least expensive intervention available. Usually, it is not until a child or youth is in an urgent and undeniable crisis that appropriate actions are taken by those within the system. There are other options—other trajectories that the lives of young people with special needs can take—but systemic barriers make those other paths nearly impossible to reach.
And things only get worse as time goes on. As children grow up and move through the system, the supports available not only decrease, they also become more rigid and inaccessible—better suited to the system itself (as it currently exists) than to the child (based on what they may or may not actually need). By the time a child with neuro-diverse special needs grows up and transitions to the adult-serving system there is even less flexibility and even fewer options.
Assessments take place much later than they should, are often inadequate, and rarely recognize the lived reality of the child, their family, or environment. The categories are flawed and inadequate. Standardized tests serve to assign resources quickly and easily rather than correctly or appropriately. Processes accommodate the rigid system and professional limitations rather than accommodating the child that the system exists to serve. That is the root problem underneath all of these systemic issues. And it means making any sort of change will require a fundamental shift in perspective and priority.
It may be a cliché to say that “every child is unique,” but that phrase only became a cliché because it is as thoroughly true as it is thoroughly ignored. Our children can’t be reduced to checkboxes or line items. The categories and tools don’t work. If anything is going to change, we need to serve and sustain the wellbeing of the child—we need to make the system work for each child rather than make each child fit within the existing system.
The experiences of my family and my two sons serve as poignant and personal examples of both how the system fails and how things can be done differently.
We knew early on that one of our sons was exhibiting behaviours that were typical of Autism Spectrum Disorder (ASD). But he was also exhibiting behaviours that were typical of Fetal Alcohol Spectrum Disorder (FASD) and Attention Deficit Hyperactivity Disorder (ADHD). We knew that he had experienced extreme trauma before he came to live with us, but once it was known that his mother was intoxicated during her pregnancy, everything except FASD was off the table when it came to determining resources and supports. Unfortunately, the strategies for FASD were not appropriate for him and the medication for FASD was frequently counterproductive in terms of his ASD.
When we finally got him into a specialized clinic to have him assessed for ASD, we were told that he had every single trait and historical marker for ASD. However, because a viable diagnosis (FASD) had already been made, the system would not also recognize his ASD and would not consider any therapeutic strategies that might need to be modified to appropriately support him, his teachers, and his family. It was not until he was 19 years old, and after we had spent many years and invested significant resources, that we finally found someone who took a different approach—someone who looked at all of his actual behaviours, and figured out that a complex interaction of pre-natal and post-natal brain injury and early-years trauma presented a combination that could not be explained or managed within any one of the possible categories alone.
Our other son was also born with complex neuro-diverse special needs. Early on, a geneticist gave us the book Anthropologist on Mars by Oliver Sacks. The title is inspired by something Temple Grandin once said—that figuring out the world here was like being an anthropologist on Mars. In other words, there are no baselines or points of reference. We have to figure things out from scratch, observing how things around us interact, and trying to tease out which results come from which causes. We must develop our own system of understanding based on the reality in which we find ourselves.
This physician instructed us—new parents of this complex and wonderful little boy—not to seek out a diagnosis or cure but, rather, to put our energy into finding out who he is, how his brain works, how he perceives the world, and let him determine the timeline and course of his own development. This proved to be the wisest and most useful piece of information we received from any professional over our 48 years of parenting dozens of different children.
I have many, many more stories that I could share. Instead, I will say this: raising, supporting, and caring for young people with neuro-diverse special needs requires a kind of curiosity, openness, and flexibility that is rarely found in our current education, health, or childcare systems. When it comes to addressing gaps, removing barriers, and improving supports, the system needs to shift its focus and attention onto the needs of the individual first and foremost.
Conclusion: Put the child first
Transition planning needs to start from the moment a child enters the system. It needs to be done from the perspective of a unique child navigating the system, rather than the system rigidly categorizing the unique needs of a child. Moving from child-serving to adult-serving systems shouldn’t feel like “falling off a cliff” to families.
There need to be people and structures that exist to support families through transitions—consistent relationships and a single point of contact that helps a family before, during, and after the unavoidable periods of change.
Assessments, categories, and criteria need to understand and serve the varied and nuanced lived experiences of young people with neuro-diverse special needs. One diagnosis should not prevent or mitigate another; resources and supports must be determined by what is needed, not by what has been done or decided in the past or for others.
Professionals such as Public Health Nurses need to have a greater role in schools and communities to help families navigate the system and access support. Such people can focus on the wellbeing of the whole child within their family’s specific context while considering other, existing barriers that are unique to their situation.
Based on my experience, there are many ways to improve these processes and supports. The one thing they all have in common is that they take into account the needs of the child before anything else—the child needs to come first. This is the mindset that should influence how and when resources are made available and this is the most important and fundamental change I can urge you to make.