My Personal Experience with Individualized Autism Funding

Jake Anthony, an autistic self-advocate, shares his personal experience with Individualized Autism Funding and his concerns with the program’s announced ending. Jake is AutismBC’s Program Ambassador and an advocate for the disability community. Are you the parent of an autistic child? Share how Family Connections Hubs and changes to individualized funding will impact your child’s access to supports and services by completing our survey.

As a person who received an early autism diagnosis at the age of four, I was among the first children with support needs to receive Individualized Autism Funding back in the early 2000s. This funding provided my parents and I with the ability to choose the best services and supports I needed to succeed. I always had a voice and a right to self-determination in being able to communicate what my needs and goals were as I was growing up. In addition to my parents tirelessly advocating for me and teaching me how to self-advocate, Individualized Funding has played a huge part in helping me become the person I am today. By having had a strong say in how my funding could be best spent in supporting my growth, I developed all the necessary skills to have a job, live independently, form lasting relationships, and deal with the challenges that come with my various disabilities as an adult.

When I heard about this new model of Family Connections Centres being implemented by the Ministry of Children and Family Development, with the intention to phase out Individualized Funding by 2025, I was very concerned. It’s clear that there’s a need to change the current Children and Youth with Support Needs (CYSN) Framework so that all disabled kids in BC receive the help they need, when they need it. However, for the many families with kids on the spectrum who are thriving under the current system, this change is understandably upsetting.

According to Minister Dean¹, the Family Connection Centres “will be one-stop shops staffed by multidisciplinary teams with a focus on meeting a child or youth’s individual needs. Parents and caregivers can visit the hubs and get supports without having to individually hire and organize services themselves.” I agree that change is needed and all kids with support needs should have access to those supports with or without a diagnosis. However, many families worry about losing control over which supports they will receive under the new system. Disabled kids, along with their parents and guardians, bring a lived expertise to decision making that a caseworker may not be able to. Families also worry they will lose crucial, hard-won relationships with service providers, especially if their child is resistant to change.

Advocates who are in support of the system change claim that it will “ensure children and youth receive faster access to services and supports all in one place, helping them reach their individual goals.²” However, the B.C. government has provided few details on how these new centres will be staffed and paid for, or where the extra funding for supports will come from. The Ministry has also not confirmed which supports and services that are currently provided under individualized funding will be available under this new model. All these unanswered questions make me and a lot of other people in the autism community feel even more uneasy. Fortunately for me, I aged out of the CYSN system over a decade ago, but I know so many people who feel their children’s futures are hanging in the balance right now.

I’ve been both amazed, as well as inspired by the tireless, brave, and powerful advocacy work that so many self-advocates, parents, family members, and service providers have been doing across the province since the Ministry’s announcement. . Our voices truly do matter together! My hope is that our collective efforts and voices can help create the change we want to see for supporting all neurodivergent and disabled children and youth in B.C. I know a lot of people are understandably feeling disillusioned, burnt out, or like their voices are being ignored right now. At the same time, one of the biggest things I’ve learned as an advocate is that proposed systemic changes are opportunities where you really have to dig deep and keep speaking up. These are tough, uncertain, frustrating times, but it’s so important for all of us in the neurodivergent and disabled community to continue working together and supporting each other.

Whether you are for or against these changes, or somewhere in between, we want to hear from you. Please fill out our survey. We want to hear about the needs and experiences of your kids on the autism spectrum. Your responses will be used to advocate for a support framework that actually meets the needs of children and youth on the autism spectrum. Have your voice heard!

Complete Survey Now

¹ https://theprovince.com/opinion/op-ed/mitzi-dean-b-c-needs-safety-net-to-better-support-families-of-neurodiverse-children-and-youth 

² https://news.gov.bc.ca/releases/2021CFD0067-002047