Representative’s statement on services for children and youth with support needs

Dec. 2, 2022

As British Columbia’s Representative for Children and Youth, it is my job to monitor the child- and youth-serving systems in this province and make comments and recommendations on how these systems can be improved.

My staff and I take a global view, well-informed by data and evidence as well as by what we hear from Indigenous communities, community service agencies, and what children, youth, young adults and their families tell our Office about their experiences with the system.

Over the last 13 months, we have been carefully watching the Ministry of Children and Family Development’s (MCFD’s) effort to re-design the way it provides services to children and youth with special (support) needs and their families. This proposed change has been the subject of much discourse in the B.C. Legislature, in the media and on social media – but that discourse has rarely represented the entire picture. It has too often been boiled down to solely an autism funding issue which, of course, is vital but nonetheless only one part of a much larger story.

My Office, with some significant reservations related to funding and capacity, supported in principle the intentions of the proposed CYSN framework announced by MCFD in October 2021. That framework promised to expand supports and services to a much wider range of children and youth with special needs, including those who now receive nothing or next to nothing such as children and youth with Fetal Alcohol Spectrum Disorder (FASD), Down’s syndrome and a wide range of other neuro-cognitive-developmental needs.

As RCY documented in both our December 2020 report Left Out and our April 2021 report Excluded, many of these children and families are in crisis and have been for some time. The community partners we worked with on those reports tell us that things are even worse for the families they serve now, two years after the Left Out report.

Let’s be clear – change was, and still is, urgently required.

There were several issues with the proposed framework – most importantly that government had not committed new funding to fill service gaps before 2025 for children and their families who now receive very little or no help. Nor was there any substantive new long-term funding so that the proposed family connection centres (FCCs) would be fully resourced to meet the needs of children and families who are presently served as well as the more than 8,000 additional children that the FCCs were intended to serve. In the absence of a long-term funding commitment, it was understandable, indeed inevitable, that parents currently receiving services would be deeply concerned that their children would lose some of the services that they count on.

Additional significant concerns about the proposed FCC model included: a lack of genuine consultation with First Nations Title holders and communities and Métis leadership and communities, parents and the

community sector; the eventual termination of individualized autism funding without clear plans for transition to new services or a continuation of existing services; concerns that the proposed FCC model would not work for many children and families; and the absence of a human resources plan for the training, recruitment and retention of professionals to provide services.

However, some of the key underlying concepts of that proposed framework – that all children and youth with special needs have a right to be well-served; that supports and services should be based on assessed needs, rather than solely on diagnosis – were principles that RCY was, and still is, very much in support of.

Last week, Premier Eby announced a reset on implementation of the proposed CYSN framework. The announcement promised continuation of individualized autism funding, stronger engagement and co-development of a new CYSN system, as well as interim investments for underserved populations.

RCY supports government’s planned “deeper consultation with parents and caregivers, First Nations, Indigenous peoples, communities, experts and practitioners, and other stakeholders with lived experience.” We support the advocacy of the First Nations Leadership Council (FNLC) which has held government accountable to its obligations of fulsome engagement and co-developing a future service model that is evidence- and rights-based and reflects the self-determination of First Nations. We also encourage government to engage and co-create culturally informed and rights-based services with Métis, Inuit and Urban Indigenous peoples.

RCY is pleased that families of children with autism who now have individualized funding no longer have to worry about losing that funding and their children’s support systems. Many of these families have lived with fear, uncertainty and anxiety about the future for the past 13 months and this is welcome news for them. Government has listened to their concerns and taken action, which is laudable.

However, that listening and that action shouldn’t stop there. This is an issue that is much bigger than sustaining individualized autism funding. By government’s own measure, there are more than 8,000 children and families who are currently excluded from CYSN services, with no access to the individualized funding model or any other model of support. And as clearly shown in our 2018 report Alone and Afraid, individualized funding doesn’t work for all families of children with autism – some families need other options when managing a team of professionals to support their child is not feasible for them.

If government is genuine in its intent to create a CYSN system in which “services are provided that meet the unique needs of all children and youth,” it is time to address the historical inequities that have left too many B.C. children with special needs and their families without the supports they desperately require.

It’s critical that children and youth with other special needs, including FASD and Down’s syndrome and a wide range of neuro-cognitive-developmental needs, along with their families and advocates, are fully included in meaningful consultation about building the new system and in receiving the services and supports that the new system will deliver.

RCY is encouraged by the Premier’s stated commitment to make new interim investments now to support the children with special needs who are currently underserved. I expect to see a substantive commitment of new funding for this purpose in the forthcoming February 2023 Provincial Budget. While I hope that this expected funding helps to level the playing field and provide greater equity in services, it is critically important to stress that even the families who currently receive services, including those who receive individualized funding, are seriously under-served. What this demands is that, regardless of what type of service system or systems are co-created and emerge over time, government needs to make a long-term commitment to raising the playing field for all children and youth with special needs, and their families.

Those investments and commitments are needed now. Children, youth and their families who are currently receiving no support cannot wait for consultation to occur and frameworks to materialize. Action must be swift to meet their considerable needs now, while a better system is designed.

Every child with special needs has the right to enjoy the best possible life, and government has the responsibility to remove barriers so that they can grow up supported and engaged in their community – including their social service supports. The current exclusionary criteria of CYSN services infringes on the rights of those children who do not have the right diagnosis and are left with no supports at all.

It is important to remember why a new CYSN framework was planned in the first place. The current system is inequitable and it is delivered unevenly across B.C. It is also insufficient to meet the current needs, marked by lengthy wait lists for assessments and services and, in some cases, offering no help at all.

RCY has been monitoring the CYSN framework process carefully for more than a year. We are also closely monitoring the current state of services to children and youth with special needs. We have engaged with other organizations and experts in this area, we have filed formal requests for detailed information on MCFD’s plans, and we will be assessing all information to provide the ministry and all of government with timely feedback, grounded in the lived reality of children and families of this province. We will continue this monitoring as government ‘resets’ the CYSN process.

RCY remains committed to advocating for an equitable system of services that is fully resourced and responsive to all children and youth with special needs, and their families.

Sincerely,

Dr. Jennifer Charlesworth

Representative for Children and Youth

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