Invisible until the pandemic, family caregivers are now on the front line


For over 30 years, I have championed family caregivers in our country, a cause born out of my own experiences caring for loved ones. I have known for a long time that they did not receive the recognition and support they deserve. One of the many sobering lessons from the current pandemic is that our country’s family caregivers should no longer be neglected. Even before COVID, they were around 53 million and millions more have been added to their ranks as the virus has spread across our country. They represent the front lines of care for their loved ones, but their enormous contributions have remained virtually invisible to policy makers, politicians and healthcare professionals.

Research shows family caregivers are at increased risk of bad health and financial insecurity. They often find it difficult on behalf of their care recipient to navigate a cumbersome health care system that seldom recognizes their role, and there are indications that less than 10 percent caregivers receive services. The pandemic has only exacerbated their situation.

Over the past 18 months, the essential role of these family caregivers has been revealed and even amplified. I have heard many stories from caregivers during this time: spouses leaving meals in front of the bedroom door while their partners were in quarantine; adult children delivering groceries to their elderly parents and having to have conversations with them across the yard; distant relatives using video chat to keep tabs on family members who had no one nearby. Then there are the most agonizing tales: of parents who fell ill and then needed care for themselves and their young children, or the dozens of women who felt they had no other. choice than to quit their job to care for aging family members or young children.

This difficult time in our history has increased awareness of the challenges family caregivers face and created what my friend and fellow activist Melinda French Gates and I see as a window of opportunity. We must act now to solidify our commitment to these essential health care workers.

I am encouraged that expert groups such as the RAISE Family Care Advisory Council are developing a strategy to illuminate a way forward. The newly introduced Rebuild a better framework is an important step, and I urge Congress to quickly pass this legislation, which will increase funding for home and community services and improve the situation for many caregivers. These crucial advances bring us one step closer to meeting our country’s long-awaited obligation to provide meaningful assistance, but there is still a lot of work to be done – providing insurance coverage for respite and coaching, adopting policies. for paid family leave and create tax credits to ease the financial expenses of caregivers. burden, to name a few.

Another way to meet these needs and build on the growing momentum is to establish a new office of caregiver health within the US Department of Health and Human Services (HHS). There are many types of caregivers, and their concerns range from mental health and substance abuse to employment policies and insurance coverage. Creating a single advocate within the federal government would improve coordination within the HHS and among federal agencies, helping the government respond to caregivers without duplication of effort.

A caregiver health office would ensure that family caregivers are represented in health policy discussions, legislation and budget negotiations. It would also help break down silos that can hinder progress by creating ways to help caregivers, regardless of the payer or condition. Those who tend to care for injured veterans face many of the same challenges as those who care for the elderly, so it is reasonable to expect the Department of Veterans Affairs and the Administration for Community Living collaborate on materials and interventions. An Office of Caregiver Health would promote this type of coordination.

History is filled with calamitous events that propelled historical changes, often remaking politics. COVID has demonstrated how essential caregivers are to a healthy American society, and we must seize this moment to invest in institutions that support them.

The front line can be a lonely and vulnerable position when not supported by reinforcements. Right now, we are loading caregivers with one of our country’s biggest responsibilities – caring for those in need – without guaranteeing their ability to succeed. Now that COVID has put the spotlight on America’s family caregivers, it is our responsibility to ensure they receive the resources they need both now and in generations to come.

Rosalynn Carter is a former First Lady of the United States and founder of the Rosalynn Carter Institute for Caregivers, a national non-profit organization dedicated to promoting the health, strength and resilience of caregivers, and co-founder of The Carter Center .


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