A commentary by a Victoria resident who has worked as an advocate to support vulnerable children, as a lawyer, investigator and parent.
The Representative for Children and Youth recently released the report Toward Inclusion: The need to improve access to mental health services for children and youth with neurodevelopmental conditions.
The report finds that children with neurodevelopmental conditions have greater mental health challenges than other kids. As the parent of a child who had Down syndrome, autism, and complex medical challenges, I was the exact opposite of shocked to learn this.
Parents of kids with autism, FASD, Down syndrome, dyslexia and other “support needs” know our kids often have more mental health challenges – as do all the professionals who work with them.
What we need is a plan that can be implemented quickly that helps this cohort of kids thrive, and reduces their need for mental health services.
In November 2021, Premier David Eby paused the Ministry of Child and Family Development’s plan to force all children with neurodevelopmental conditions to receive services through centralized hubs with limited mental health supports. The premier then gave Minister Mitzi Dean the mandate to co-develop with parents, families, and professionals about what a transformed system of services might look like.
The co-development process has been slow, selective, and ineffective. Parents, as well as experts, generally seem to be left on the sidelines.
MCFD appears to be picking some organizations to work with — and funding them — while ignoring others. Moreso, while everyone knows that change is urgent, MCFD seems intent on talking a lot, for a long time, while taking little action. As Dean recently stated: “we have time.”
Dean is wrong. We don’t. The kids don’t. They need revitalized supports now.
That’s why a cross-section of parents and professionals rolled up their sleeves and developed and released a plan for transformed services that is practical, tangible, and can be actioned now.
The Parents and Professionals Plan (P + P Plan) is based on thousands and thousands of hours of lived experience raising children with disabilities, and the latest research.
Since its release in April, we have gained wide support from a growing number of professionals, political parties, and most importantly, even more parents and caregivers.
Two of the things the P + P Plan asks the government to do to make the lives of children with neurodevelopmental conditions better are to make changes to diagnosis guidelines, and to expand the existing program of individualized funding for children.
First, recent research shows that a single qualified specialist can accurately diagnosis autism in 90 per cent of cases – the other 10 per cent of children with complex challenges need a team for a diagnosis.
Outdated B.C. guidelines require 100 per cent of children to see three specialists in order to get an official diagnosis of autism. This is a waste of medical resources and a bottleneck.
The guidelines should be modified so that children can be diagnosed by one qualified specialist, reducing unnecessary duplicate and triplicate doctor visits. This will ensure more children will start receiving funding and services much more quickly.
Second, for all children with neurodevelopmental conditions, including Down syndrome, FASD and dyslexia, there needs to be accessible, decentralized and responsive service delivery built around the needs of each child.
The program that already works for children with autism – individualized funding – should be expanded to more children.
Why does individualized funding work? Simple. It empowers children and their families. It allows families to spend money directly on therapies, services, classes and respite that are tailored for their children.
It provides parents the choice of what services are provided, who provides them, and where they are delivered. It cuts out government bureaucracy and paperwork, and spends money on services over administration.
And the evidence shows this.
Since 2002, B.C. has conducted a real-time experiment. Parents of children with autism have been receiving individualized funding for more than 20 years and have shown that this system, although not perfect, works better and is vastly preferred by parents.
One of the issues Dean has exploited in her push to consolidate her ministry’s power and remove parental choice is the frustration of parents. Many parents of children with Down syndrome and FASD for years have wanted funding similar to the parents of kids with autism, and for a good reason.
B.C.’s 20-year experiment shows that parents who get individualized funding build programs and get services for their children more quickly than governments and contracted agencies.
If Eby and Dean are serious about transforming services for children in B.C., the P + P Plan is a clear, reasonable, and effective path forward.
So the question is: does the B.C. NDP government agree that parents and professionals know what is best for their children?
>>> To comment on this article, write a letter to the editor: [email protected]
