Moving From Survival

By Sandy Ho: For Entire Post, Click Here…

Editor’s note: This op-ed by the author was recently rejected by The New York Times’ (NYT) opinion section. In the midst of the COVID-19 pandemic it is critically important to center disabled people in policy conversations about community living and care as infrastructure. A recent collection of letters to the editor from NYT about the Better Care Better Jobs Act was extraordinarily inadequate. Enjoy!

I knew adhering to public health guidance would not be enough for me to survive the pandemic. As a disabled person who is a wheelchair-user with a compromised respiratory system and needs a CPAP machine every night, I am alive because of my control over who provides my personal care, where and how I live, who comes in and out of my home, and how my care is provided. My access to Medicaid home and community-based services (HCBS) is a significant reason I did not die during this pandemic. But is it significant enough to compel political will in D.C. to pass legislation that will expand federal funding of Medicaid HCBS?

It almost seems like I survived this pandemic by chance. I happen to be a lifelong resident of Massachusetts, a state that has provided Medicaid HCBS since 1985. Soon after I was born with a congenital disability, my parents enrolled me in MassHealth, the state’s Medicaid program. Over the course of three decades, I have become connected with a network of agencies and services that have taken place in my home instead of requiring that I move to a nursing home type setting. But during the pandemic my luck was the difference between potentially becoming a COVID-mortality statistic and one of the lucky few who received these essential services. Agencies like the Boston Center for Independent Living mailed masks and other protective equipment so consumers and the people we hired could be safe. In March, my family and I buried my grandmother and strategized ways we could grieve safely while providing one another emotional support. My doctors ensured that my medical supplies and medications could be mailed to my home or picked up at the pharmacy by a person I hired. I frequently zoomed or FaceTimed with other disabled friends across the country to share strategies and tips to help each other get by. Because I self-direct my services, Medicaid HCBS facilitates the ways I can be cared for and can provide care to those around me. 

Medicaid HCBS sends the message that the state trusts and supports me in self-directing my services including hiring, firing, and training the people, including family and friends, to provide direct care for me. During a time when there seemed to be no answers and with a U.S. death toll surpassing six hundred thousand, I was constantly worrying about what ifs: What if someone I hired to provide direct care became sick? What if I became sick? What if I was denied a ventilator at the hospital ICU because of my disabilities? What if I couldn’t access PPE or medical supplies for myself or my workers? 

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