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 Rebecca’s submission. You can read Rick’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 these consultations. My name is Rebecca Ataya Lang and I am currently a home share provider for a middle-aged woman with autism. I am also the Director of Programs and Services at The Federation of Community Social Services of BC where I work directly with organizations that provide services for children and their families. A number of years ago I also ran a small daycare centre where one of our guiding principles was to create dedicated space for children with neuro-diverse needs. As such, I feel I am uniquely able to speak to the issues at hand from a number of important and inter-related perspectives.
Both my personal life and my professional life have given me valuable insights and offered first- hand experience about the systems that must be navigated by children and families with special needs. There are many issues that need to be addressed, but I will focus my discussion on two areas needing the most urgent attention: assessments and transitions.
When it comes to children and youth with neuro-diverse special needs, my experiences have made it clear that the process of having needs identified and met is incredibly challenging for almost all families. It is even more challenging for vulnerable families who are, at the same time, struggling with other issues such as domestic violence, intergenerational trauma, racism, or poverty (housing/job/food/transportation insecurity). Assessment processes fail to account for such things. Obtaining referrals is time-consuming and difficult. Waitlists for necessary assessments are frustrating and drain resources. Families that already face significant barriers find, instead of support, only more barriers.
Eligibility and assessment processes need to be far more accessible and much easier to navigate than they currently are. Public health nurses could have a larger role and a bigger presence in schools and communities to help families access support. Child and family counsellors could be more present in schools and given the mandate to work with families to ensure both school and home environments suit the child’s needs while also preparing the family for inevitable transitions (and supporting them through such periods).
Assessment should not be about gatekeeping services in order to keep government costs down. Families shouldn’t have to fear losing necessary supports during a period when their child is “doing well” for a time. The fact that this happens at all is heartbreaking; families shouldn’t have to struggle so hard to get the basic supports they need and those supports shouldn’t vanish as soon as they start having their intended, positive effect.
The intersections between the health, education, and social services sectors are complicated and confusing making the system very hard for families to understand, let alone navigate through. Transition periods are especially fraught (into/out of school, moving communities, out of pediatric health system). Even for the families that, for whatever reason, have the skills and/or resources to advocate for their child, navigating these systems is difficult and time-consuming. For families lacking those skills and/or resources, it is nearly impossible and the consequences are often dire.
Transition planning needs to start the moment a child enters the system. I have heard from many families who have described the transition from child-serving systems to adult-serving systems as “falling off a cliff.” Families have little-to-no information about such transitions, they have no assurances about what kinds or levels of support to expect, and they often have to deal with completely different levels of resources from MCFD and from CLBC—discrepancies that seem random and are clearly not at all related to the specific individual’s needs.
There need to be structures, staff, and resources available to support families with these inevitable and significant periods of transition. There needs to be a focus on relationship consistency during these times—research has proven time and time again the importance of consistent relationships when it comes to the wellbeing of young people. A single resource person that works with the family before, during, and after these transitions would make a world of difference. Consistent levels of resources and support need to be prioritized and they should be based on the needs of that specific individual, not a generic line item applied across the board.
We invest a lot of resources when these young people are going through a life-threatening crisis and need acute care. We do so, I believe, because the necessity is made clear. But we should be investing just as much on preventing young people with neuro-diverse special needs from ever getting to such crisis points in the first place. There are many ways to do so and I have shared a number of them above. I sincerely hope this committee makes the changes that the young people of BC need and deserve.
Rebecca Ataya Lang