My Family's Story is Not Unique

Having a family member with a disability who requires 24/7 care forces families to have hard conversations—often sooner than most.

My brother’s live-in caregivers recently lost a loved one, and he’s been staying at my house more for sleepovers. While he enjoys the time, the ripple effects of changes in routines, expectations, and environments are real—for him and for us. These transitions, while meaningful, are also exhausting.

In supporting my brother, I’ve started to see just how many parallels there are between caregiving for individuals with profound disabilities and those caring for aging parents. The needs are strikingly similar—and growing.

As autism diagnoses continue to rise, with profound autism accounting for roughly one-third of cases, and as our aging population increasingly requires 24/7 care, the reality is clear: more families will need support, and our systems—especially in employment, healthcare, housing, and financial planning—need to adapt.

My family’s story is not unique. And it won’t be rare in the coming years.

We need increased awareness, empathy, and most importantly, action. That includes expanding caregiver leave options, rethinking workplace flexibility, and designing systems that truly reflect the needs of modern families.

This is not just a personal issue—it’s a workforce issue. It’s a community issue. And it’s one we all have a stake in solving.