05/14/2026
Becoming the primary caregiver for a medically complex child frequently means forgoing a career and often any type of monetary income for their family.
For some, this is their preference. But for many, it feels much less like a choice and more like the result from a lack of systemic support, childcare options, and career flexibility needed to both maintain a job and care for a disabled child at the same time.
And in a time when many are feeling the financial crunch, this reality can put families and their medically complex kids in a stressful financial situation.
It shouldn’t be this way. Expanded home and community-based services, robust educational programs, adequate nursing, paid caregiver programs, and waivers systems that easy to access and apply for are just a few of the interventions that could alleviate some of this stress.
And it’s going to require the advocacy of caregivers to make this a reality.