For a long time, independence felt like something I could see but couldn't quite reach.
I have a Spinal Muscular Atrophy (SMA), and require support 24 hours a day. That doesn't mean I don't know how I want to live my life. Quite the opposite. I know what kind of support I need, when I need it, and what I want my days to look like. The challenge was finding a system that gave me enough control to actually build that life.
For me, that system has been Choice in Supports for Independent Living (CSIL).
CSIL is a self-directed home support option in British Columbia. Instead of having an agency make many of the decisions about your care, CSIL provides eligible people with funding to hire and manage their own support workers. As a CSIL employer, that means taking on real responsibilities, including hiring, training, scheduling, supervising staff, and managing the administrative side of running your care. It is work, but for me it has also been life-changing.
Independence Is More Than Doing Things Yourself.
Before becoming a CSIL employer, I lived with my parents in a small two-bedroom apartment. Because I require around-the-clock assistance, space was a major barrier to hiring the support I needed, and it also meant that, despite being an adult, much of my life had to fit around other people's schedules. CSIL changed what was possible.
Today, I live in my own accessible apartment and employ my own caregivers. I can decide who supports me, train them in how I want things done, and create a schedule that actually fits my life. That last part might sound small, but it isn't. Being able to decide when I get up, when I go out, when I work, and when I stay up late gives me something most people rarely have to think about. Even deciding when I simply want some quiet time at home is part of that. It gives me control over the rhythm of my own life.
That is what independence means to me. It isn't about doing everything without help, because I will always need physical assistance with many parts of daily life. Independence is having control over my choices and having the right support around me to make those choices possible.
Becoming an Employer Changed My Role
CSIL also changed the relationship I have with the people who support me. I'm not simply receiving a service, I'm an employer. I recruit people who I think will work well with me, train them, create schedules, communicate expectations, and solve problems when they come up. I also have to think about the kind of workplace I want to create. There are certainly challenges that come with that responsibility. Staffing issues don't magically disappear because you're on CSIL, and neither do payroll, scheduling, employment requirements, or the occasional unexpected problem at the worst possible time.
But having those responsibilities is also part of having agency. Instead of decisions about my daily life constantly being made somewhere else, I have a meaningful say in them.
CSIL Has Allowed Me to Build a Life
Having control over my support has opened doors far beyond personal care. I can live in my own home, work, volunteer, participate in my community, and advocate for accessibility. I can make plans knowing that my support is built around my life rather than having to build my life around a care system.
CSIL hasn't made me independent because I suddenly stopped needing other people. It has made me independent because needing support and having autonomy are not opposites. That distinction matters.
Why CSIL Employers Need a Collective Voice
Becoming a CSIL employer also makes you quickly realize that many of the challenges you face aren't yours alone. Across British Columbia, CSIL employers are navigating hiring, funding, employment responsibilities, changing policies, and the everyday realities of directing their own care.
That's one reason I've become involved with the Association of CSIL Employers (ACE). ACE brings CSIL employers together to share experiences and advocate for a stronger CSIL program. For me, that matters because programs like CSIL should not simply allow people with disabilities to survive at home; they should give us a genuine opportunity to build lives of our own choosing.
My experience with CSIL has shown me what that can look like. I have my own home, my own staff, my own schedule, and a much greater ability to decide what I want my life to be. There is still plenty about CSIL that can be improved, which is exactly why CSIL employers need spaces where we can connect, share our stories, and speak collectively about what is working and what needs to change.
Independence isn't doing everything alone. Sometimes, independence is finally having the power to decide what support looks like.
