Who will care for the caregivers?

July 1, 1993

Who will care for the caregivers?

By U.S. Sen. Dick Durbin

By U.S. Senator Dick Durbin

“There are only four kinds of people in the world,” wrote former First Lady Rosalyn Carter in her book Helping Yourself Help Others. “Those who are currently caregivers, those who have been caregivers, those who will be caregivers and those who will need caregivers.”

Family caregivers are vital components of today’s health care system, but far too often their work goes unrecognized. Although Congress enacted Medicare in 1965 to provide medical care for seniors and the disabled, there is no universal long-term care program to support our non-medical needs as we age or become disabled. Instead, most Americans are forced to rely on their family and friends.

More than 50 million people today provide medical care for a loved one, and this number will only grow as the country ages and as patients are sent home from the hospital sooner. Many people become caregivers gradually, at first providing a small amount of assistance to an aging parent or spouse with a degenerative disease. Often, these individuals eventually become full-time attendants. The California Caregiver Resource Center estimates that family caregivers who care for those with Alzheimers’, Parkinsons’, traumatic brain injury or other adult-onset disorders provide an average of 73 hours of care each week.

Many caregivers must balance a job with their caregiving duties. For others, caring for a relative is a full-time responsibility. Those who have had to quit their jobs to care for a loved one often lose access to employer-provided health insurance. And some 16 percent of caregivers report that their own health has worsened since becoming responsible for the care of a family member. So at a time when they are perhaps most in need of medical care, many find they are uninsured.

In addition to family caregivers, some Americans choose to devote their professional life to caring for others—work for which they are often poorly compensated. On top of low salaries, many professional caregivers receive none of the benefits many of us take for granted. In fact, a recent study by the California Health Foundation discovered that nearly half of the home healthcare workers in Los Angeles County lack insurance—and that 90 percent of these individuals are living at or below the poverty line. Many uninsured caregivers are forced to delay or forego needed medical attention because they have no coverage and cannot afford to pay for it out of their own pockets.

This is no way to thank these men and women whose dedication and care allows many to remain in the community or simply to live as comfortably as possible. As chairman of the Senate Governmental Affairs Subcommittee on Government Oversight, I recently held a hearing to examine how we might do a better job of caring for caregivers. We heard compelling testimony from caregivers and from those who rely on them. Many spoke of a difficult job made much harder by a lack of fair pay and adequate health insurance.

In light of this important testimony and after listening to many of my constituents discuss this problem, I am sponsoring legislation to ensure that those who care for a loved one full time have access to health insurance. This bill would provide states with $4 billion annually for a program modeled after the successful State Children’s Health Insurance Program. Such a program would give states significant flexibility in the ways they meet the health insurance needs of the caregivers in their state.

The state of Rhode Island has already pioneered this concept by setting up a program, paid for entirely with state dollars, that provides health insurance to childcare workers who provide subsidized childcare to low-income families. Since being implemented, this program has helped retain workers and improve the quality of care for the state’s children. I hope that my legislation will bring such benefits to other states.

There will likely come a time in all of our lives when we need care or find ourselves providing it for those who are close to us. We should never take caregivers or their dedication for granted. These men and women have given selflessly, and we should see to it that they are cared for as well as they care for others.

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