Caregiving As a Human Rights Issue By Carol Zernial, M.A.

Family caregiving is unpaid care performed by family members and friends. It represents 90% of the long-term care in this country. In the United States, 18% of the population — or 43 million adults — care for an adult or child. Caregiving has been a mainstream part of life, but it is just now gaining visibility among health care professionals and elected officials.

In October 2016, Lucy Barylak and Nancy Guberman released Beyond Recognition – Caregiving & Human Rights in Canada: A Policy Brief, raising questions about treatment of family caregivers in Canada compared to the Universal Declaration of Human rights, passed by the United Nations in 1948.

Caregiver rights are not the same thing as human rights. The Caregiver Bill of Rights is an important first step in recognizing that caregivers have individual needs. It is time that we in the United States ask if the higher standard of basic human rights is being upheld for family caregivers.

Key human rights documents in the United States include:

  • Declaration of Independence
  • Constitution of the United States
  • The Bill of Rights
  • Thirteenth, Fourteenth, and Fifteenth Amendments to the US Constitution
  • Nineteenth Amendment to the Constitution
  • Universal Declaration of Human Rights

Just as life, liberty and the pursuit of happiness are guaranteed in our founding documents, the countries of the world under the U.N. declared that everyone has the right to life, liberty and security of person.

Article 22 of the Declaration of Human Rights states everyone has the right to work, to free choice of employment, to just and favorable conditions of work and to protection against unemployment. Do U.S. family caregivers really enjoy these rights today? Almost 40% of caregivers quit their jobs to provide care, or due to lack of job flexibility. Holding a job becomes difficult when caregiving stretches five to ten years, and becomes more demanding.

Article 24 states that everyone has the right to rest and leisure, yet 60% of family caregivers of adults are working full or part-time, and have to provide up to 62 hours of caregiving each week.

Article 25 states that everyone has the right to a standard of living adequate for the health and well-being of himself and his family . . . or other lack of livelihood in circumstances beyond his control. AARP reports nearly  70% of family caregivers use their own money to care for loved ones. Many feel financially strained. Caregivers can spend almost half their income on expenses related to care of their loved one. MetLife estimates a caregiver who leaves the work force loses an average of $303,800 in wages and retirement.

Today, the primary mechanism for the protection of family caregivers is the Family Medical Leave Act. It provides up to 12 weeks of unpaid leave for the care of immediate family members, but 88% of workers aren’t covered under the law, and working caregivers can’t afford time off with no pay.

Tax credits to offset long-term care expenses proposed as part of the Act fall short. The credit of up to $3,000 is less than the average of $5,000 a caregiver spends, and it requires some sort of income.

If we dig into the root cause of the human rights issues related to caregiving, we find that Americans lack universal health care coverage. Because many Americans have to wait for coverage until age 65 under Medicare, most adults reach old age in poorer health than necessary. We also lack a comprehensive system of long-term services and supports. Currently, our system is basically 100% private pay or 100% public pay. Individuals are required to spend down to poverty, often pulling the caregiving family down with it.

For the first time in history, we have an aging boom combined with a longevity boom. Unfortunately, age is the single biggest risk factor for a myriad of chronic diseases, including Alzheimer’s disease. The 5.5 million people with that disease today will ultimately grow to 16 million by 2050. There is no cure or effective treatment for Alzheimer’s. This disease alone could overwhelm the fragile system of family caregiving. At a time when more caregivers than ever will be needed, fewer will be available due to the long-term impact of lower birth rates in the United States.

As we move ahead, it is important to reframe caregiving in the U.S. as a human rights issue. We must evaluate if proposed policies for health and human services go far enough to protect the right to work, right to leisure and right to a standard of living. Most Americans are proud to have a role in returning the care that parents once provided to them. However, caregivers should not be expected to jeopardize their health, the welfare of their families, or their own solvency in old age.

Carol Zernial is executive director of the non-profit WellMed Charitable Foundation, which offers complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Learn more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.