Home care is a lifeline for people with disabilities. Congress must find a way to invest in it.


By Steve Grammer

In high school, while my classmates were visiting college, I visited retirement homes. Even though I was only 18, I was informed that I would soon be living there. It was true: barely in my twenties, I was transferred to a nursing home where my roommates were elderly patients with Alzheimer’s disease.

In my freshman year, officials from the Virginia Department of Social Services took me out of my once-a-week college preparation classes to prepare me for institutional life. Nothing, however, prepared me for how alienating life in a retirement home could be.

I was born with cerebral palsy, a disease that affects my motor skills. My disability means that I need help getting around and sometimes communicating. When I was 22, my mother fell ill and was placed in a nursing home, while I was placed in a separate facility on the other side of town. I only had the opportunity to see her once before she passed away. I was placed in the home’s Alzheimer’s unit, which the staff said was the best arrangement since I was “a long-term care patient”.

These days my life is very different. With the help of home helpers, 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 medication being administered late. I can hang out with friends late while we listen to our favorite bands. I’m a huge fan of 80s music and had a great time this year seeing a Journey cover band perform.

And I became an activist: I spend my free time advocating for other people with disabilities, doing what I can to make sure people like me don’t end up in terrible facilities like the one I spent my youth.

You might be wondering what caused this dramatic change. The answer is simple: I finally qualified for home helpers to help me with the daily tasks of life.

Over the weekend, Sen. Joe Manchin, DW.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 wages and worker training. home. It’s a tragedy for people like me who rely on them every day.

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At the age of 31, after nine long years living among patients with Alzheimer’s disease, my dream of independence finally came true: I got off the Medicaid waiting list and I have received a waiver for Home and Community Services (HCBS) funding. I left the retirement home and was able to get my own apartment. Now, my home health aides administer my medications, help me prepare my meals, and make my trips easier.

Being surrounded by residents in their eighties and forties has never stopped me from wanting to enjoy my youth. I wanted to do the same things other 22-year-olds did: have a drink with friends or spend an evening attending a concert. However, I had to register in and out of the nursing home if I wanted to go anywhere with my friends. And if I arrived even a minute after midnight, it would count as a “night out”. Life in a retirement home was like a prison.

For too long people with disabilities like mine have been pushed into collective settings. When I was young, state agency officials didn’t even mention home care was an option.

We need to stop seeing nursing homes as the default option for people in need of care. People with disabilities have the right to live in the least restrictive environment possible and most would prefer to live independently in their community if they can. I am living proof that people who have been barricaded can live alone and thrive while contributing to their community.

In 2018, there were more than 800,000 people on waiting lists for home and community services in the United States, largely due to a national shortage of caregivers. Caregiving is hard work and home caregivers only earn around $ 17,200 on average, so many good caregivers leave the industry and potential caregivers choose different areas of work. For people with disabilities, this means a shortage of workers who are so essential to our lives, and a tragically long time to live in overcrowded facilities.

Building back better would have been the most transformative national investment in home care in 40 years, ensuring that people with disabilities don’t have to be forced into nursing homes like I was. Lawmakers must find a way to invest in the industry, with or without Manchin’s backing.

Last summer marked 10 years since I left the nursing home. I celebrated this anniversary by going to the beach for a week and soaking up the sun. I would never have had this opportunity without the caregivers who help me live independently.

The elderly and the disabled deserve to have the same simple but profound opportunity: to live with the people we love, to go out when we want, to feel the sun on our faces and the chance, once in a while, to hear music from our favorite cover band ringing in our ears.

Steve Grammer lives in Roanoke. This article was submitted with assistance from the Center for American Progress.


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