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Without home care, I wouldn’t be completing my bachelor’s degree

The dome of the U.S. Capitol is seen in Washington, Wednesday, Oct. 5, 2011. (AP Photo/J. Scott Applewhite)

The House finally passed The Biden Administration’s Build Back Better Agenda, which will include the most transformative investment in home care in 40 years. This investment will expand access to caregivers, ensuring that people like me with disabilities receive the best care possible.

As a person living with disabilities, college life for me looks very different from the experience of the typical student. I use a wheelchair to get around and a ventilator to support my breathing. I attend classes virtually, but I can’t get online without the assistance of a caregiver.

When I was just six years old, I was diagnosed with a neurological disease, Duchenne Muscular Dystrophy. I knew early on that I wanted to pursue higher education, but many people with disabilities face barriers when doing so, and that was true for me as well.

One lesser known obstacle to pursuing careers and higher education is a lack of home care services. For most of my life, my mother performed many of the tasks related to my daily care. A lot of these services ought to be provided by health care, but aren’t. That means family members often have no choice but to serve as unpaid caregivers, even as they struggle to balance their careers and other obligations.

In the year since my mother, my primary caregiver, passed away, home health aides have been helping me to continue my studies. Now, nurses and in-home caregivers help me remain independent and access my online classes. I consider myself fortunate, given the large number of people waiting in vain for home care that they can’t get access to.

Across America, more than 800,000 elderly people and individuals with disabilities are waiting for in-home caregivers through Medicaid. But agencies struggle to recruit and retain qualified staff to perform this physically demanding work that pays so little — on just $17,200 per year, on average.

People with disabilities like mine are often compelled to receive care in nursing homes and other congregate care settings. But such places can limit our autonomy and put our health at even greater risk. With home care access, I can live my life to the fullest.

Some 61 million Americans have a disability, and millions more will develop one during their lifetime, many because of the long-term effects of Covid. If the United States doesn’t adequately fund home care services, more people will be left with no clear answer about who will help them bathe or cook their next meal.

My caregivers help me with those daily tasks and more. They help with cleaning, and get me to and from doctor’s appointments. My caregivers help me log onto the computer so that I can remotely attend classes and take part in political organizing that I’m involved in in my community. Receiving care at home means that I get to pursue these activities in a way that’s safe for my health.

This investment expands access to caregivers, ensuring that people with disabilities receive the best care possible. This is an important moment for the disability community, which represents a huge part of our nation’s population but whose needs have been ignored for decades.

This important moment for the disability community, which represents a huge part of our nation’s population but whose needs have been ignored for decades. It’s urgent that the Senate passes this bill. We must push forward for the many people who are still waiting for care.

Cody Newcomb lives in Chandler, Arizona. He is pursuing his bachelor’s degree at the University of Arizona.

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