Caregiving is a Feminist Issue

If you are not a caregiver now, you surely know one. Caregivers can be paid professionals, or the relatives, friends or community members of the chronically ill, the disabled, the elderly or perhaps children who are not their own. Caregivers provide life-sustaining, necessary and invaluable support, often working long hours and enduring sometimes heartbreaking conditions.

Professional caregivers suffer pressure-filled working environments, stress-related illnesses and are paid low wages with few legal protections. Informal (unpaid) caregivers must balance their own work obligations with the responsibilities of caring for another, often a family member or close friend, at a high price -- lost employment opportunities, health issues and a lack of community or workplace supports.

There are number of definitions for "caregiver." Those who work in a health care facility, who provide in-home care, or who offer care as part of their family or community role, may all be considered caregivers. For some, the definition includes child care providers or those who provide occasional care. There are also a number of cultural, economic, and racial realities, as well as realities of sexual orientation, that affect the day-to-day lives of caregivers. What follows is but a general introduction to a highly complex array of issues.

Why is Caregiving a Feminist Issue?

The issues that caregivers face in the United States deserve our attention. Of the professional caregivers in the U.S., 90 percent are women, and of the informal caregivers, up to 75 percent are women. Caregiving is a feminist issue because it overwhelmingly affects women, both as caregivers, and as those likely to need care because women are a majority of the very elderly.

While women have made impressive gains in other aspects of society, we still work to find equity in the distribution of family care work between genders. While this dynamic is slowly changing, particularly as men find themselves cast in the role of caregiver for aging parents or an ill partner, the bulk of the nation's care work is still performed by women.

The lack of perception of care work as valuable work contributes to this inequity and needs to be adjusted from the persistent norm - that family care work is still categorized as less important than market work and therefore those who allocate significant portions of their time to these caregiving tasks are cast as less valued contributors to a productive society. Women's role as caregivers is incredibly valuable, both emotionally and economically. According to the Family Caregiver Alliance (FCA), for example, the estimated value of the work of informal caregivers is between $148 billion and $188 billion annually.

Statistically, a woman who has acted as a family caregiver is most at risk for impoverishment during her own senior years. As many women spend years caring for others, they find that as they age, they are in need of care themselves. In 2000, the FCA says that almost 40 percent of women age 65 were living alone; 51 percent of women age 80 were living alone. By ensuring that professional and informal caregivers have the financial support, training, and access to resources they need, we can ensure that all women will have access to the skilled and valued help of a caregiver when they need it.

What Issues Do Caregivers Face?

Professional Caregivers

Rarely in U.S. society are professional workers given so much responsibility, asked to work in such difficult conditions, and yet are paid such low wages and have so few employee benefits. Professional caregivers are often expected to spend extra hours with clients for no pay, engage in unpleasant tasks, and care for those who may be unable to show appreciation or forge relationships. Often, the working conditions of professional caregivers are such that, ironically, they may find it difficult to find the time and energy to care for their own families.

Professional caregivers are also expected to be highly versed in a dizzying array of health care conditions, from Alzheimer's to autism to chronic physical disabilities to mental illness. Despite the fact that caregivers are called upon to serve in a wide variety of settings and work with a number of illnesses, the opportunities for training and continuing education is rare, and when available, expensive.

Many professional caregivers are not affiliated with a health-care institution or an entity that provides employee benefits and as such, lack basic health care for themselves and their families. They may also lack other benefits such as vacation, sick time, long-term disability and retirement benefits.

As we saw in the recent Supreme Court case, Long Island Care at Home v. Coke, professional caregivers lack basic employment guarantees, such as a minimum wage, overtime pay and a host of basic benefits. In this case, the Court classified these hardworking professionals in the same category as occasional babysitters or pet sitters, regardless of training, job status or place of employment.

Informal Caregivers

Informal caregivers juggle an endless number of responsibilities. Stay-at-home mothers not only provide care for their children but often to other family members or friends, and face constant physical and emotional demands. Caregivers in the paid workforce cope with the combined responsibilities of caring for others while meeting the demands of both their workplace and the caregiving needs of the rest of their family and community. For women, caregiving has been called the "unexpected career."

The vast majority of women caregivers report that they have a significant level of conflict between the many roles they are expected to fill -- caregiver, mother, partner, and employee (see GRCC Older Learner Center, Sample Research Data on Caregiving, Caregiver Resource Network).

For women who provide informal care and also are in the workforce, the toll is palpable. More than one-third are forced to reduce their work hours or pass up additional job responsibilities or promotions because of the demands of caregiving. An additional one-third of informal caregivers who are women simply leave the workplace altogether, ironically reducing their likelihood of receiving adequate health care benefits, retirement or Social Security income for themselves.

The demands are so great that informal caregivers place their own health at risk. Up to 25 percent of all female informal caregivers suffer a health issue specifically due to their caregiving responsibilities. These issues include a significantly higher risk of coronary heart disease, high blood pressure and low immune function. Many also suffer stress-related mental health issues, such as depression or anxiety disorders. According to the FCA, informal caregivers also are less likely to take part in preventative health care measures that will reduce their own chances of suffering a significant health problem.

What You Can Do

Changes within our society, such as an aging population and increasing health care costs, may mean that the types of issues faced by an increasing number of both professional and informal caregivers will become more complex and more difficult to address as the numbers and needs grow.

There is something you can do!

• Fight for training and job supports for professional caregivers: Some states, such as New York, have implemented education and employment benefit programs for professional caregivers. If you don't have such a program in your state, contact your legislator to push for one. [http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1848]
• Fight for laws providing wage and benefit guarantees for professional caregivers: Congress needs to address the inequities of Long Island Care at Home v. Coke, as well as inadequate employment laws that force professional caregivers to work under tenuous and oppressive conditions. Identify members in your group or chapter who are professional caregivers or are working in health care. Work with them to create events and actions to support better treatment and pay for professional caregivers. Join with paid caregiver advocacy groups in your area to strategize ways to advance the cause of economic justice for paid caregivers.
• Fight for Medicaid/Medicare: Medicaid/Medicare is the only source of appropriate health and long-term care services for nine million children and adults with disabilities. It gives children with severe disabilities access to physical and occupational therapy so they can lead healthy and more active lives, continue to live at home with their families, and participate actively in their community. This provides quality care not only for the person with a disability but also a break for the caregiver.

Medicaid also provides essential support so that adults with disabilities can live independently and receive services in community settings, rather than being confined in an institution. Unfortunately, there is a bias in Medicaid funding that gives preference to institutional settings over home and community-based settings, even though a substantial body of research suggests that home and community-based settings often cost only a fraction as much as institutional care. Right now for every Medicaid dollar that goes to home and community-based services, two go to institutional care. Another policy approach involves making all long-term care a mandatory Medicaid service, rather than limiting it to institutional care. A third approach offered by the Center for American Progress is to create and fund a stand-alone long-term home and community-based services program.

• Fight for Paid Family Leave Bills: Only a few states have laws that allow workers to take paid time off to care for a family member in need. Such laws ensure that a worker can return to her waiting job, and while providing care can have access to some level of income to ensure that she and her family are not placed in an economically precarious position.
• Fight for Affordable Housing: Persons with disabilities and families with long-term health issues face difficulty in finding affordable housing. Often, financial resources that could be used for housing are consumed by health care costs. Many persons with disabilities rely on income support programs such as SSI from social security, as they may have limited earning power if they can only work part time or intermittently. This puts further strain on caregivers, financially and mentally.
• Fight for Supportive Social Services: Caregivers need access to counseling, support groups and health care information, as well as financial and technical assistance programs. Respite care in particular, which provides temporary relief for caregivers from their ongoing responsibilities, is the most frequently requested and needed family support service. Respite has been shown to prevent or delay more costly out-of-home placements, reduce the risk of abuse or neglect, and to help keep all family members safe and stable. Cuts in any of these services on a federal, state or local level can often have devastating affects on caregivers who are already struggling to meet their day-to-day challenges.

Educate yourself! Caregiving encompasses a myriad of highly complex issues, infused with sexism, homophobia, racism, and xenophobia. The more we know about the issues facing caregivers, the better equipped we will be to offer care, support professional caregivers, or become a recipient of needed care. Many organizations, such as the National Council for Independent Living, the National Family Caregivers Association, the Family Caregiver Alliance, and the Bureau of Labor Statistics, among others, provide valuable information about caregiving.

Here are some great ideas for grassroots actions and programs for Caregivers Economic Justice that you or your group could organize around today!

To get more involved, you can contact the NOW Mothers and Caregivers Economic Rights Committee -- or create your own local chapter MCER Task Force!

More information: Family Caregiver Alliance, Who are Caregivers