Moving From Survival
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?
Even though I and my direct care workers are now fully vaccinated, many of these questions remain unanswered. Still, if it ever came to it, I would rather think through these scenarios with people I trust and hired. These are people who have known me for most of my life, understand that I have quality of life, and recognize the dignity and respect I deserve in life and death. As a disabled person these conversations about end-of-life care are not new to me. The difference during the pandemic is that at least 12 million other disabled and older people in the country who also need long-term care services considered similar scenarios.
I wonder about the kinds of dignity in death or choices available for the people who died in long-term care facilities. These deaths made up approximately a third of all COVID-19 deaths. One study showed that nursing homes with higher percentages of Black and Hispanic residents were more likely to have COVID-19 deaths than that did not. What if the people and families of those who died in nursing homes had been given more choices for how their care was provided?
By passing the Better Care Better Jobs Act, this Congress has an opportunity to expand Medicaid HCBS funding including to states where it is most needed. Co-sponsored by Democratic Senators Casey, Wyden, and Dingell, the bill would potentially allow states to gain funding through a permanent increase of up to 10% on their federal Medicaid match dollars. Earlier this year President Biden signed the American Rescue Plan into law which included the highest increase in HCBS funding since the Affordable Care Act. However, that law only provides a temporary increase in matching federal Medicaid dollars for states which expires in March 2022. By expanding funding for states where Medicaid HCBS is most needed, this would address the bias towards institutional care in our current systems that contributed to thousands of needless deaths during this pandemic. There are over 820,000 people on waiting lists for Medicaid HCBS services, the average time waiting for services is about three years. Not everyone has the privilege of a family nest egg to pay for twenty-four hour care for a loved one, or to place a relative in a swanky facility. The average annual cost of a nursing home is $105,840 for a private room, an expense that is often not figured into many retirements or family budgets.
Independence has long been the center of an American narrative; however, the vast majority of boomers prefer aging in place and living at home. If there is any chance that fewer deaths happen during the next pandemic, our public policies must bend in the direction of a changing American reality. This includes changing the story of disabled people from one that often elicits charitable and pitiable responses to a national shrug as the COVID-19 pandemic hit communities of color, people with disabilities and chronic illnesses hardest. National myths are not worth the death of over six hundred thousand people.
Of course, expanding funding of Medicaid HCBS will not abolish the inequities and barriers in access to services and medical care. It will not dismantle the insidious ways that racism and ableism are more likely to harm people of color with disabilities in medical decision-making. We still need to establish the systems and infrastructure to support the data collection of the experiences of disabled people and their families who receive Medicaid HCBS and those who did not. Importantly, an equitable solution to care should be led and driven by disabled people on Medicaid, a population that has been overlooked and too often unaccounted for throughout this pandemic. From every angle the numbers have been tough to hold in our hearts and minds, but more difficult is the knowledge that our leaders in public health and in D.C. have done too little to improve them.
I don’t want to be remembered as a lucky disabled person who managed to survive the COVID-19 pandemic. I want to ensure that a quarter of the U.S. population also has the choices to live and survive with dignity during the next national crisis, too. As we mark the thirty-one years since the passage of the Americans with Disabilities Act, this right to prioritize dignity in care and choices in how we live, age, and die is one I hope our country and disability community can make permanent.
Sandy Ho is the founder of the Disability & Intersectionality Summit, and the research project manager at the Community Living Policy Center at the Lurie Institute for Disability Policy. She identifies as a tea-drinking and public library loving queer disabled Asian American woman.
You can find her on Twitter: @NotYourAvgHo101
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