Commentary: Home care workers deserve better, because people with disabilities deserve freedom

Imagine being 35 years old and facing the reality that without the necessary help you would be forced into a nursing home. 

For many people with disabilities who live in Pennsylvania, this is not just a hypothetical — it’s a looming threat.

I’ve received home care since I was 18 years old, and because of it, I’m able to live in my own home, participate in my community, develop my hobbies, and advocate for others with disabilities. 

I live a full life. And that is because I’ve received care in the participant-directed model. This means I get to choose who provides my care and how it is delivered. This autonomy is critical — not only for my personal freedom and well-being but for the overall efficiency of the healthcare system. 

By avoiding agency profits and overhead, the participant-directed care system puts money back in the pockets of our care givers, ensuring state dollars are going where they belong. Investing in participant direction saves the state Medicaid program millions of dollars a year, an important consideration as our community-based service system continues to expand and federal funds become uncertain. 

Despite the vital role our home caregivers play, they remain drastically underpaid and undervalued. This chronic lack of funding threatens the future of self-direction, and self-dignity, for Pennsylvanians like myself.

My caregiver, Lynn provides deeply personal and essential services to me, such as lifting, dressing, and assisting with my hygiene. Even with decades of experience, she struggles to pay medical expenses for herself.

How can we expect caregivers to provide quality care when they are barely surviving financially?

Thankfully, there is recognition at the state level that change needs to occur to make progress. Governor Josh Shapiro’s 2025-26 budget proposal includes $21 million to support participant-directed care so that for the first time ever, caregivers such as Lynn, would receive the financial security they deserve. This includes a wage increase and funding paid time off. 

Participant-directed home care is essential. It is fiscally responsible. And it enables self-determination. Let’s start treating it that way.

Brandon Kingsmore is a home care consumer from Allentown. He was born with cerebral palsy and has been advocating for others with disabilities since 2020.