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Home care is a lifeline for people with disabilities. Demise of Build Back Better means fewer will receive it.

Photo: Getty Images

In high school, while my classmates were away on college visits, I toured nursing homes. Even though I was just 18, I was informed that I would soon be living in one. It was true: Barely into my 20s, I was moved to a nursing home where my roommates were elderly Alzheimer patients.

During my junior year, officials from the Virginia Department of Social Services pulled me from my college prep classes once a week to prepare me for life in a facility. Nothing prepared me however, for how alienating life in a nursing home could be.

I was born with cerebral palsy, a condition which affects my motor skills. My disability means I need assistance getting around and sometimes with communicating. When I was 22, my mom fell ill and was placed in a nursing home, while I was placed in a separate facility on the opposite side of town. I got to see her just once before she passed away. I was placed in the home’s Alzheimer’s unit, which staff insisted was the best arrangement since I was “a long-term care patient.”

These days, my life is vastly different. With the help of in-home caregivers, I have my own apartment and I can choose what I want to eat, where I want to go, and what I want to do. I no longer worry about my food being served cold or my medications being administered late. I can stay out late with friends while we listen to our favorite bands. I’m a big fan of ‘80s music, and had a great time earlier this year seeing a Journey cover band perform.

And I have become an activist: I spend my free time advocating for other people with disabilities, doing what I can to make sure that people like me do not end up in terrible facilities like the one where I spent my youth.

You might wonder what caused this dramatic change. The answer is simple: I finally qualified for home care workers to help me with life’s daily tasks.

In recent days, Sen. Joe Manchin, D-W.V., appears to have torpedoed President Biden’s Build Back Better plan, and with it, millions of dollars that would have been used to improve pay and training for homecare workers. This is a tragedy for people like me who rely on them each day.

At the age of 31, after nine long years living among Alzheimer’s patients, my dream of independence finally came true — I got off the Medicaid waitlist and received a waiver for funding of home and community based services (HCBS). I moved out of the nursing home and was able to get my own apartment. Now my home caregivers administer my medications, help prepare my meals, and facilitate my travel.

Being surrounded by residents in their 80s and 90s never stopped me from wanting to enjoy my youth. I wanted to do the same things other 22-year-olds did: to grab drinks with friends or spend an evening attending a concert. I had to sign in and out of the nursing home if I wanted to go anywhere with my friends, however. And if I arrived even one minute after midnight, it would count as a “night out.” Life in a nursing home felt like prison.

For too long, people with disabilities like mine have been pushed into congregate settings. When I was young, state agency officials did not even mention that home care was an option.

We need to stop treating nursing homes as the default option for people who need care. People with disabilities have a right to live in the least restrictive environment possible and most would prefer to live independently in their communities if they can. I’m living proof that people who have been barricaded away can live on their own and thrive while contributing to their communities.

As of 2018, there were over 800,000 people on waitlists to receive home and community based services in the U.S., largely due to a national shortage of caregivers. Caregiving is a challenging job and home caregivers only earn about $17,200 on average, so many good caregivers are leaving the industry and potential caregivers are choosing different lines of work. For people with disabilities, this means a shortage of the workers who are so central to our lives, and a tragically long time living in crowded facilities.

Build Back Better would have been most transformative national investment in home care in 40 years, ensuring that people with disabilities do not have to be forced into nursing homes, as I was. Lawmakers need to find a way to make investments in the industry — with or without Manchin’s support.

This past summer marked 10 years since I left the nursing home. I celebrated the anniversary by going to the beach for a week and enjoying the sunshine. I never would have had that opportunity without the caregivers who help me to live independently.

Seniors and people with disabilities deserve to have the same simple yet profound opportunity: to live with the people we love, to go out when we choose, to feel the sun on our faces and the chance, from time to time, to hear the music from our favorite cover band echoing in our ears.

Steve Grammer lives in Roanoke, Virginia. This op-ed was submitted with the assistance of the Center for American Progress and first published by the Virginia Mercury.

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