The care tax: The cost of the lack of care for caregivers 

One cost we don’t see on our tax forms each year that we should: the cost of unpaid family caregiving. In fact, President Biden declared “right now, the cost of care is too high” as he signed the largest set of executive actions on care Tuesday in history.   

Every person across every socioeconomic background, every race, and every stage of life will need care at some point in their life. Whether as an infant, when recovering from an illness, living with a disability, or as we age, care is a universal experience. In this country, care is a shared and unspoken tax as well. 

Whether we’re talking about paying out of pocket to make a house wheelchair accessible or the time and lost wages while navigating a labyrinth of insurers and the revolving door of in-home direct care workers in a country without federal paid leave, the financial weight crushing families across the country due to our lack of care infrastructure can no longer be ignored. 

The Biden administration’s executive order recognized the growing population of family caregivers supporting loved ones — children, parents, partners, siblings, grandparents, aunts or uncles, friends or neighbors — who provide 36 billion hours of care nationwide, according to a recent AARP report. Each year, tens of millions of people in this country find themselves providing an average of 18 hours of unpaid care work per week, valued at a staggering $600 billion in 2021. 

Family caregivers, disproportionately Black women and women of color, are effectively taxed twice by the missed wages and the unpaid care they perform. Losing an estimated $522 billion in income each year while caring for a loved one due to lost wages, family caregivers are taxed from both ends: reduced work hours and out-of-pocket costs for medical supplies, transportation, personal care and more.

This is something I know personally; just last month, I took an unexpected trip to care for my grandfather who was hospitalized in another state. My trip totaled almost $2,000, from my airfare, travel costs, and meals to the medication, supplements, and equipment he needed that were outside of what Medicare covers. My mom, aunts, and uncles who followed in our care conga line all incurred costs, and lost wages. I know that most people simply cannot afford unexpected costs like this, which forces families across this country into impossible scenarios every single day when addressing long-term care needs of aging loved ones.

Family members like me have to fill in the gaps because our political leaders haven’t funded long-term care supports in this country, and the systems there are in place are restrictive and crumbling. Strict income and eligibility requirements for Medicaid, the country’s largest funder for aging and disability care, forces disabled adults to live in poverty so they can receive the services they need to stay in their homes, be part of their community, and work. Worse, the recently proposed Republican plan to take Medicaid away from people who do not meet new work requirements would mean that people who are in poor health or who have a disability could lose their health care and hurt older people ages 50 to 65, including those with disabilities, for whom there are few job opportunities. We have to bolster and expand these programs, not cut them by billions. 

Let’s be clear: Investing in care benefits everyone. Raising revenues to support care investments would make it easier for family caregivers to support their families, and taxing the rich and profitable corporations is necessary to win the caregiving investments millions of Americans need and deserve.

We can build a country where hard-working, loving family members don’t have to try to navigate their increasing care needs by themselves and without support, and those who need care are supported by a robust system. Addressing family care needs lowers families’ out-of-pocket costs, creates jobs in local communities, maintains income and enables family caregivers to maintain or secure jobs. 

The Biden administration isn’t waiting on Congress to act. This country can’t afford to. We need a strong care infrastructure and collective solutions that can meet the needs of 21st century families.

Right now, Congress has the ability to pass historic caregiving-focused legislation, such as President Biden’s budget, the Better Care Better Jobs Act, and the Home and Community Based Services Access Act, all of which would help millions of us continue to do what matters most: care for the people we love.
Family caregivers provide lifesaving care that allows our families and communities to thrive — but they, and those they care for, have been left out and left behind by government investments for far too long. We simply can not wait any longer to transform the care landscape so everyone can live, work, and age with dignity.

Nicole Jorwic is the Chief of Advocacy and Campaigns at Caring Across Generations. She is a special education attorney and leads and supports many coalitions to advance the priorities of care including the Care Can’t Wait Coalition and the Disability and Aging Collaborative. Jorwic is most importantly a sibling to her brother Chris, 33, who has autism, and is on the care team for her 90-year-old grandmother who has Parkinson’s.