Supporting family caregivers

Across the U.S. more than 40 million Americans provide care for parents, spouses, children and other relatives with disabilities or illness. Here in our state, about 178,000 Mainers care for their loved ones and help them live in their homes and communities.

Family caregivers are an invaluable resource to our society, devoting enormous time and attention and making many personal and financial sacrifices to care for their loved ones. Too often, however, the contributions these vital caregivers make and the challenges they face are overlooked in the development of health care policy.

That will change with the enactment of the RAISE Family Caregivers Act that I co-authored with U.S. Sen. Tammy Baldwin, D-Wisconsin. I am delighted that one of the first acts of Congress in this new year was to pass this bipartisan legislation that will develop a coordinated strategic plan to leverage our resources, promote best practices and expand services and training available to caregivers.

RAISE stands for Recognize, Assist, Include, Support, and Engage family caregivers. This law will help achieve those goals by requiring the Secretary of the U.S. Department of Health and Human Services to develop a national strategy to recognize and support family caregivers. That plan will be developed with the guidance of an advisory council that will include family caregivers, along with people representing older adults and people with disabilities; veterans; health care, social services, and long-term care providers; and state and local governments.

The strategy will address such issues as expanding training and respite services for family caregivers, supporting caregivers in their workplaces, and protecting their financial security. The strategy will develop and disseminate best practice to professionals and family caregivers across America. The strategy will also coordinate federal programs to make them more effective.

The RAISE Act is based on a recommendation of the bipartisan Commission on Long Term Care and modeled on the law I co-authored in 2010 with then-Senator Evan Bayh that created a coordinated strategic national plan to combat Alzheimer’s disease. As a result of that national plan, an expert council calculated that $2 billion per year is needed to combat Alzheimer’s. We have now secured $1.8 billion for Alzheimer’s research for fiscal year 2018, bringing us within reach of the goal. Similarly, in the important policy discussions to come in Washington on health care, family caregivers will now have a seat at the table.

It is a seat they have earned. Our nation’s more than 40 million family caregivers provide more than $470 billion in uncompensated long-term care. In Maine, the unpaid care that family caregivers provide is valued at more than $2 billion every year. Family caregivers take on such tasks as managing medications, helping with bathing and dressing, preparing meals, arranging transportation, and handling financial and legal matters. This unpaid care helps delay or prevent costly nursing home care, which is often paid for by Medicaid. Many family caregivers put their own health at risk since caregivers experience high levels of stress and have a greater incidence of chronic conditions like heart disease, cancer and depression.

The value of family caregivers and the importance of supporting them will only increase in the years to come. Every day, 10,000 baby boomers turn 65, and as many as 90 percent of them have one or more chronic health conditions. Americans 85 and older are the fastest growing segment of the aging population. This population is most at risk for multiple and interacting health problems that can lead to disability and the need for round-the-clock care.

As a senator representing the state with our nation’s oldest average age and as chairman of the Senate Aging Committee, working to improve support and respite for our family caregivers is an issue that is near and dear to my heart. In December, I was honored to receive the Caregiving Leader in Congress Award from the Caregiver Action Network and was grateful to be called a hero of this cause. The real heroes, however, are the millions of people who provide compassionate care to their loved ones day after day throughout America.