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There are an estimated 63 million caregivers in the U.S., paid or unpaid, who provide care for people who rely on them for basic needs. While that might seem a mighty number, this invisible workforce is under increasing strain. Americans are living longer, and the growing number of people needing care is at odds with the limited resources available to provide it. 

The recent passage of the Trump administration’s , may further compound the burden, through cuts to programs like Medicaid, which provide critical support for both caregivers and those they care for, particularly older adults and those with disabilities or chronic illnesses. 

In a Q&A adapted from the of , health law attorney Stacey Lee, JD, an associate professor at the Johns Hopkins Carey Business School and in Health Policy and Management at the Bloomberg School , discusses how this caregiver crisis, and how it will worsen as Medicaid cuts are enacted.

Editor’s note: This episode was recorded before the OBBB was signed into law on July 4.

Can you define the caregiver emergency and explain how big of a problem this crisis is?

There are 24 states that have been deemed to have a critical emergency when it comes to the availability and the care provided by caregivers across the board. By their own assessment, these states have reached a dire moment where they are relying on existing nursing homes, long-term care facilities, and people caring for their loved ones at home, and the infrastructure is buckling under the increased demand.

It’s a serious problem. There are 53 million unpaid caregivers—people providing care for their loved ones in the home—in America. They provide over $870 billion a year in service to society in terms of caring for these people.

How did caregiving evolve to where it is today?

It’s a confluence of a few factors. We have an aging population—people are living longer. Traditionally, it was the woman’s role to stay home and care for parents and children. But it is very common now to have two working parents, and as a result, there is not that pool of free labor to care for a population that is living much longer than they did 40 or 50 years ago. For a long time, this care has been absorbed within the homes, but we are at a tipping point where I don’t know that that is going to be an option [to meet the growing demand].

Is this primarily a crisis of paid or unpaid caregivers?

Both. There are about 5 million paid caregivers; however, their ability to continue being paid at current levels will probably be adversely affected by the $880 billion in cuts to Medicaid.

Medicaid plays an important role in the care of some of our most vulnerable populations. Sixty-three percent of nursing home residents receive Medicaid funding. The OBBB reduces the available pool of money that these caregivers receive. It limits the number of pilot programs that states can enroll for caregiver stipend programs. It also increases the requirements for hiring and maintaining caregivers at nursing homes and long-term care facilities.

With these changes, you will see a decrease in both the number of caregivers who can provide care in nursing homes and in the number of eligible residents. If they’re not being cared for by nursing homes or long-term care facilities, they’re coming home, which will require family members to provide additional care. It’s safe to assume that the number of unpaid caregivers will increase.

What could be done to improve the situation?

This huge workforce is the silent, invisible backbone of a disproportionate amount of care that goes on in the U.S. Because of that, the number of services provided to them are very few. There’s respite care, there are caregiver stipends—but generally those things come through Medicaid-type services. If there are cuts, the respite care, the stipends—they will be first to be eliminated. When those services are taken away from caregivers, and there’s an increased demand for caregiving, you’ll have an increase in burnout among caregivers. 

I’d love to see states implement a caregiver needs assessment. Caregivers need programs that check in on how they’re doing, pilot programs that maintain their stipends and that allow them to take time off by having someplace for their loved ones to go for a predetermined number of days a year. 

Caregivers deserve a seat at the table in terms of trying to figure out what their needs are and what would help alleviate some of this burden. They provide so much care, the least we can do is provide care for them.

How many people are eligible for the stipends you mentioned?

A very small number of people. It is a very difficult, time consuming process to go through that requires filling out the forms and having the inspections of your home. For someone who isn’t well versed in the health care system, figuring all that out on top of the demands of caring for their loved ones is an incredible burden. 

With more and more people doing this invisible work, shouldn’t we be building the system up, rather than considering further cuts?

There needs to be a systematic approach to this. Eight hundred and eighty billion dollars is a big number. Itrepresents cuts that will make it harder for nursing homes to hire and retain certified nursing assistants and caregivers, and that will make it more difficult for family members to, on a long-term basis, provide for their loved onesby cutting the stipend and by reducing the ability for them to get any type of respite. 

All of these things add increased burdens on the system—including what it does to the patient. If a patient is not getting care in a nursing home or a long-term care facility, then they’re going to be increasingly using the emergency room for primary care. That results in delayed diagnoses. It makes recovery—which could have been very focused—protracted over time. I think these cuts are going to be downstream costs that we end up reabsorbing.