I require 24/7 care. Medicaid cuts hit families like mine first.

Self-direction is the future of home care. If we want to achieve that future, we need to invest in these programs rather than cutting them and relying on familiar but more expensive models.

Bradley Ledgerwood Opinion contributor

Living with cerebral palsy, I often refer to my caregivers as my “hands and feet.”

That’s because while I have a perfectly sound mind, my body is far from it. Doing something as simple as typing these words – let alone eating, going to the bathroom or any other physical activity to take care of myself – can be an immense challenge that requires 24/7 support.

Most folks don’t understand what 24/7 care looks like. For example, think about how many times you need to go to the bathroom every day, then imagine needing another person to help you every time. If I get something as small as a mosquito bite on my leg, I need someone else to scratch it.

That need can bring even heftier challenges when I want to leave the house, like the time we went on a family outing to the zoo and my wheelchair battery died, leaving my family to push more than 400 pounds in the pouring rain just to get home.

Fortunately, I have two loving parents who can provide support like this. I also have access to a self-directed care program that allows me to live at home with independence while ensuring that my parents are supported and compensated for the essential care they provide.

Unfortunately, with increasing fiscal constraints on Medicaid and persistent underfunding of home and community-based services, that lifestyle could soon become out of reach for others like me.

Medicaid cuts come for care like mine first

The way self-directed care works is simple. In places where it's is available, older Americans and folks with disabilities can choose their own caregivers, often family members or close friends. Then, with the help of financial administrators acting as a go-between, we can ensure our caregivers are paid with Medicaid funds.

Those administrators can support us with a wide range of resources beyond administrative tasks. The group I work with in my home state, Public Partnerships, LLC, supports my own advocacy efforts for the disability community, empowering me in my own independence as well as making it a reality for others.

While demand for these programs has grown in recent years, recent federal cuts to Medicaid are undermining them, potentially forcing folks like me around the country into nursing homes.

This is happening despite the fact that home care is not just the preferred option for most people, it’s also the more cost-effective one. Because Medicaid is required to fund nursing homes and is only “optional” when it comes to supporting home care, cuts hit programs like mine first.

Experts warn that states will respond by shrinking enrollment, reducing services or lowering pay rates – all at a time when 700,000 people are already stuck on waiting lists and home-care workers earn just $11 to $12 an hour in many states like mine. In other words, these cuts ignore both economics and common sense.

Self-direction is the future. Defunding it costs us.

To be clear: Nursing homes can be a powerful option for those who don’t have a caregiver to support them. There are plenty of very kind and capable caregivers at these good-faith institutions. But the level of care just isn’t the same as one-on-one support delivered in the comfort and safety of one’s own home.

Take my grandfather, who lived in one of Arkansas’s top nursing homes. Due to chronic understaffing, he had to wait two hours just to go to the bathroom. He nearly had an accident by the time my uncle finally arrived at the nursing home to help him, and my uncle ended up hurting his back because he wasn’t trained to assist my grandfather properly.

Meanwhile, I get to live in my own home, supported by two people who know me better than anyone. I don’t have to undress in front of strangers. I get to wake up to the same voice that’s been caring for me for years.

That shouldn’t be a luxury – and if we invest in self-direction at the level that we should, it doesn’t have to be.

Self-direction is the future of home care. If we want to achieve that future, we need to invest in these programs rather than cutting them and relying on familiar but more expensive models.

That’s especially true as our population is only getting older and the United States suffers from a caregiver crisis. More than anything, we need to normalize the idea that those who need these services deserve to remain in their homes, communities and families just as much as anyone else.

Bradley Ledgerwood is an advocate and Arkansas resident.