Editor’s Note: Rachael Scarborough King is an associate professor of English at the University of California, Santa Barbara. The opinions expressed in this commentary are solely her own. View more opinion on CNN.
In the fall of 2019, my husband and I had to decide whether we could afford for him to stay alive.
Ady had been diagnosed with the fatal neurodegenerative disorder ALS, or Lou Gehrig’s disease, three years earlier, and given a prognosis of three to four years. Now, we were weighing whether he should undergo a tracheostomy, a procedure which would insert a tube into his windpipe and hook him up to a ventilator, so he could continue breathing after his diaphragm became too weak to lift his lungs.
The procedure itself was covered by the health insurance we receive through my employer. But after the tracheostomy, Ady would need 24-hour care to make sure his airways were open and the ventilator was working. Our insurance did not cover home care, which would cost more than $10,000 per month, at a minimum.
I was pregnant with our second child, due that November. Ady was determined to stay alive and spend as much time with our children as possible. For those who undergo a tracheostomy, ALS could be less of a terminal illness than a long-term disability, especially for those under the age of 60. The risk of death is not from the disease itself, but from complications such as infections.
Luckily, we had generous friends and family who helped support Ady’s care—which would have been completely unaffordable for us alone—until we successfully pressured our health insurance company to cover the cost of his home care. My husband is a prominent healthcare activist who has the knowledge and resources to work the system. He now has a team of six wonderful caregivers who make it possible for him to live with his family rather than be isolated in a nursing home.
Many families across America are not so lucky. There are currently more than 800,000 adults and children on Medicaid waiting lists for Home and Community Based Services (HCBS). President Joe Biden’s proposed $400 billion in funding for HCBS, an amount which would clear the waiting lists and provide a living wage for caregivers, was removed from the bipartisan infrastructure deal with the agreement it would be included in the $3.5 trillion Build Back Better budget proposal.
Now, the Build Back Better proposal is also under threat. Democratic Senators Joe Manchin of West Virginia and Kyrsten Sinema of Arizona have said they think the $3.5 trillion price tag is too high, with Manchin stating he would prefer a number around $1.5 trillion. But neither senator has given much indication of what they would like to cut. Manchin has called for new benefits to be means-tested, limiting the eligibility to people with lower incomes, but it ignores the fact middle income families could experience unexpected, life-changing circumstances and need access to those benefits too.
Manchin has repeatedly said his opposition to the spending bill is based on not wanting to “turn our society into an entitlement society.” In response, Vermont Sen. Bernie Sanders asked, “Is protecting working families and cutting childhood poverty an ‘entitlement’?”
I would go further and ask Manchin: Is staying alive an entitlement? While many Americans have come to accept the cruel reality major health challenges may lead to debt and bankruptcy, few realize patients may not be able to afford the care that keeps them alive.
In the US, up to 95% of patients with ALS choose not to undergo a tracheostomy.
The number is so low for getting a lifesaving surgery, in part, because of the financial burden of the 24/7 required care afterward.
Without professional home care for Ady, I could not adequately care for Ady, care for my children and pursue my career as a professor. To do all three, I need both home care and childcare. These are things we are all entitled to. And this isn’t just the socially ethical choice; it also makes economic sense.
Research shows every dollar put into childcare generates up to $1.88 in increased economic activity by care providers, in addition to the economic benefits of closing educational achievement gaps and boosting female workforce participation. It has been estimated the proposed $400 billion for home care would create approximately one million new jobs.
The truth is any resistance to funding home care may be grounded in a fundamental stigma: a belief that life with serious disabilities is not worth living. Many people look at Ady and blithely state they “could not live like that.” But Ady has a high quality of life. He eats dinner with his family every night. He takes his son to basketball practice and picks his daughter up from daycare. He also has an intense, full-time job working to strengthen our democracy and advocate for the healthcare we all deserve. It would be life in a nursing home, away from those he loves, that would not be livable.
And at the same time, no one should assume they will not at some point be disabled or have to care for someone who is. As the Baby Boomers – my parents’ generation – age, many more people will need home care. Without affordable childcare, people of my generation will be unable to assist their parents. People in this “sandwich generation” suffer from high levels of caregiver burnout, further restricting both economic and social advancement.
Funding home care, childcare, and the other social services the US sorely lacks would create a society of mutual caring alongside economic advance. We are all entitled to live in that society.