DEVELOPING A PATH FORWARD TO SUPPORT NEURODIVERSE CHILDREN AND THEIR FAMILIES IS GOOD FOR BUSINESS (2023)
Issue
British Columbia is blessed with a diverse, well-educated population that is a draw for businesses looking to create, invest and/or grow their business. That diversity includes many families raising neurodiverse children, which includes autism, Down syndrome, and fetal alcohol syndrome among others. To ensure these children and their families are supported, B.C. has a system of support services from speech pathologists to behavioural therapists that is delivered through the public sector, non-profit organizations, and private small business operators.
It’s important to ensure these children have the help they need for their development into adulthood while relieving some of the pressure these families might feel, which impacts their work/life balance today as parents must juggle work commitments with the added demands of caring for a child with support needs that range from addressing complex health needs to multiple appointments. It’s equally important to ensure the families of neurodiverse children have choice when it comes to who provides the support services whether it’s a non-profit organization or a small business provider.
Background
The convergence of business and social issues continues to evolve. In the past 5-10 years, many businesses have embraced the social issues of childcare and diversity, equity and inclusion as key factors to their long-term business success. Childcare, in particular, is multi-faceted as a business/social issue given ongoing labour shortages and the need for childcare to enable more women to remain or re-enter the workforce to meet those shortages. At the same time, childcare delivery has seen many new small businesses start up to help deliver this service. Of course, the delivery of childcare services has been caught in an ideological debate as to whether this service is best provided in the public, private, or non-profit sector with many small business operators finding their business model challenged by government.
In a similar way, the support for neurodiverse children and the delivery of those support services can end up captured in this same debate. Beyond the role that public, private, and non-profit organizations play in service delivery, it important to remember that families must balance their work life with the need to care for the unique needs of their child with a disability. This choice between work and supporting their child, if the appropriate level support isn’t available, impacts businesses because their workers will potentially need to take time off or one of the parents will decide to pull themselves from the workforce to care for their child. In a time of chronic labour shortages, we need to support workers by offering a support for their family’s circumstances in order to keep everyone gainfully employed if that is their choice.
To better understand the scope of the issue when it comes to children with neurodiverse needs, it helps to look at the statistics. Unfortunately, according to a 2020 report by B.C.’s Representative for Children and Youth, current statistics on children and youth with special needs (CYSN) is ‘scarce’ to use the Representative’s word. Based on a disability rate established by Stats Canada in 2006, there were 37,319 B.C. children and youth with disabilities at the time of the 2016 census.[1] The need for better data is critical to understanding the needs for services across the province and the capacity of the system to meet those needs.[2]
Also impacting the support for neurodiverse children is incredibly long wait times for assessment, along with an eligibility process that is a barrier to families with children who clearly needs support, like those with Down syndrome, but are either under-served or not served at all. In their report to a provincial select standing committee on children and youth with neuro-diverse special needs, Inclusion BC consistently recommended the need to eliminate wait times for assessments in order to access children and youth services and eventual support in the K-12 education system.[3] Better assessment will provide a richer understanding of children living with neurodiverse challenge and give government a better understanding of the level of support those families need.
The current system is an individualized funding model where families receive direct support and can tailor the funding to meet the specific needs of their child. For instance, under this current funding model, families with autistic children received $22,000 per year up to the age of 6 and then $6,000 per year between the ages of 6 and 18. This funding has allowed families with autistic children to determine the best treatment for their child whether it’s accessing services through public health care, the school system and/or supplementing speech and behavioural therapies through private small business providers. The concern has been that the support for other neurodiverse children hasn’t kept pace or is missing entirely for many disabilities when compared to the support for autism.
In October 2021, the B.C. government announced a plan to transition from individualized funding for neurodiverse children and their families to a centralized hub model system to care for their needs regardless of diagnosis.[4] The plan’s intention was to deliver more services to a broader group of neurodiverse children, such as children with fetal alcohol syndrome who receive little support, while also providing these services closer to where people live.
The new system was expected to provide help to approximately 8,300 more children and their families, representing a 28% increase in the number of children who will be able to access disability supports and services.[5] The announced changes were met with concern by many in the disability community who felt ‘caught off guard’[6] and, while acknowledging autism services account for the biggest share of services, government needs to remember that funding and service delivery is a much broader issue within the disability community. Many small business owners who deliver services, such as speech pathology, also felt some concern they couldn’t keep supporting their clients with the change over to hub centres.
Hearing from concerned parents and stakeholder groups, the B.C. government announced a halt to the transition in November 2022. The government also committed to a ‘deeper consultation’ process.[7] Given the importance of this issue, it is necessary to find the right balance by listening to all stakeholders involved in the care and treatment of our neurodiverse children. It is encouraging the B.C. government is committed to a more comprehensive and inclusive consultation process, but it’s important to see action on this front as quickly as possible while everyone is focused on the challenges at hand.
THE CHAMBER RECOMMENDS
That the Provincial Government:
- Working with all representative organizations from the public, non-profit and private sectors, broaden their announced comprehensive consultation process to re-consider funding levels and service delivery models to ensure the best possible support for all neurodiverse children and ensure choice for their families.