I’m Karli Drew—a 31-year-old writer, creator, and consultant with a zest for life. After my initial start in the music industry, I pivoted into disability-focused work with the hope of leaving this world more accessible and inclusive than I found it. Since then, I’ve been featured in TIME and Forbes, worked behind-the-scenes on a CBC television series, and more. Behind my achievements lies a critical element required for me to survive: carework.
I have a neuromuscular disorder called Spinal Muscular Atrophy (SMA), which profoundly affects my muscles from head to toe. Permanent and progressive in nature, SMA has rendered me unable to do any physical tasks unassisted. Based on current Alberta government home care caps, I qualify for 57.75 hours per week — despite a clear need for 24-hour care.
Antiquated assessments neglect to recognize the actual needs of any human being, and have left half of my waking hours (or two-thirds of my life when factoring in overnight care) unaccounted for. Resources are limited to scheduled tasks, when much of life, including life-sustaining tasks such as having to urinate and hydrate are unscheduled, and therefore inconsequential according to the present system. On top of rationing my care, home care has also recently begun denying me preventive wound care supplies, suggesting pain medication instead. The troubling fact is, most of my pain and pressure sores could be avoided with adequate home care for repositioning.
"I can’t live my life or meet my needs in the home care hours allocated to me. I have the very same basic needs as anyone else. I just can’t execute those needs without assistance."
Without care, I can’t prepare meals. Or eat. Or go to the washroom. Or shower. Or shift my weight. Or scratch my nose. Or attend medical appointments. Or reach my phone. Or lock the door. Or escape my home in the event of a fire. And so on.
My mother has been my primary caregiver my entire life, sacrificing her own needs and livelihood for me to live, while my father has worked away to support us. Our reality has ravaged my parents' physical and mental health. We’ve been forced to have difficult conversations surrounding my care as we continue to face impossible situations, and look ahead to what inevitably accompanies aging. Like anyone, they’ll need care at some point, too.
"My parents are increasingly afraid to die — not because of garden-variety mortality fears, but because my fate is tied to theirs so long as Alberta imposes an unrealistic and unethical cap on care."
Having devoted their lives to ensuring my survival, my parents shouldn’t have to consider the ripple effects of one day dying themselves. Without reform and expansion of this failing system, the grim reality of institutionalization looms over me — and with my hands-on, round-the-clock care needs, I would not survive in a facility. Figuratively and literally, the cost of institutionalizing me is far greater than keeping me in my home.
"The care insecurity crisis affects every Albertan. Able-bodied is a temporary state, and a robust home care system is the only sustainable, ethical, and economical path forward. It is a systemic failure that demands our collective attention."
I am a multidimensional person with goals, responsibilities, and loved ones. I’m an active community member and a self-employed taxpayer. But I should not have to be successful or ambitious to deserve care and subsequently, life. At present, I can access MAID, but not the care I need to survive. You don't need to know me or my full story to see the injustice afoot.
This is why we are calling for an immediate increase in home care funding. Disabled Albertans and seniors have lives worth living and families worth unburdening. We deserve dignity and autonomy. We have the right to exist in our homes and communities.