Maine’s Family Caregiving Referendum—Revolt of the Sandwiched?

The “sandwich generation” refers to folks who look after both older family members and their own kids. These people—often in their 40s and 50s—are simultaneously coordinating the logistics and drama of both high school and home care. In Maine, a ballot referendum this fall to make home care more available to residents could give caregivers there a shot at relief, if enough others share their concerns. It will not be the last time those concerns are raised.

The stresses of family caregiving are real. Caregivers of older adults have higher rates of depressive symptoms, anxiety, stress, and emotional difficulties than non-caregivers, according to a 2016 National Academy of Medicine report. They also have lower self-ratings of physical health, higher rates of chronic disease, and impaired health behaviors.

More and more individuals—usually female—are subject to these effects, as lifespans have extended, family sizes have shrunk, baby boomers have aged, and the number of households with two adults working outside the home has grown.

Caregivers from Maine—the oldest state in the country, with 20% of the population over 65—stand to be the most stressed of the stressed. Perhaps for this reason, its citizens will vote in November on a ballot initiative (Question One) to make home health care universally available. Paid for with a new payroll tax on the portion of individual income not taxed by Social Security (over $128,400 in 2018), anyone with a limitation of at least one activity of daily living could receive a limited set of home- and community-based services, as well as family stipends and rent subsidies—all to aid in the work of caregiving.

The ballot question includes the creation of a board to oversee the new benefit. The board would be required to set rules for eligibility and benefits determination and guarantee that at least 70% of the funds dispersed would go to home care aids.

Support for Question One, including marshaling the 65,000 signatures needed for the initiative to qualify, was organized by the Maine People’s Alliance, which also organized the successful 2017 ballot to expand Medicaid (now subject to court litigation due to Governor LePage’s refusal to implement it). In addition to the toll on family caregivers, supporters point to the lack of affordable home health care in Maine, the weak and underpaid home health care provider network, and the foregone income from family members forced to curtail employment to care for family members.

These arguments have not swayed the candidates for statewide office in Maine, including the four people in the governor’s race, none of whom support Question One. Opponents express concern over the effects of the imposition of a new tax on economic development in the state, the use of a ballot initiative to skirt the legislature, and the broad and vague authorities to be given to the oversight board.

The origin of Question One—its initiative comes from national advocates organizing low-income care workers and its funding from national foundations and labor unions—has raised concerns about local control and the influence of outside money, a topic more often associated with politically conservative efforts.

Maine’s challenge is hardly unique. A weak economy—and the reduced family income that results from it—creates more challenges and fewer resources with which to address them. In contrast, Hawaii—with a stronger island economy and cultural values that emphasize care and respect for elders—established Kapuna Care in 2017. The program, with a capped budget funded with general revenues, pays people who work at least 30 hours a week and care for a family member. Faced with long waiting lists and more available revenues, the state’s legislators expanded its reach tenfold this year. To reach more people, they had to limit the benefit to $70 per week from $70 a day and double its still-modest budget to $1.2 million.

Given the chance to bypass legislators yet again on a health policy question, how will residents of the Pine Tree State vote? An August poll of 500 likely Maine voters conducted by Suffolk University on Question One showed 51% supporting it and 34% opposing it. This overall result masks wide variations of support by party (77% of Democrats vs 26% of Republicans), gender (41% of men and 61% of women) and age (topping out at 68% for those aged 55-64 and looking at the prospect of caring for Mom or Dad).

But what exactly is the challenge being addressed by Question One? The policy solution and public support for it depend upon how the issue is defined.

• Is this a fairness issue, in which an estimated 34,000 people in high-income households will pay for services for 27,000 people and the home health aides who care for them?
• If the issue is a weak home care delivery system and underpaid workers, is it better policy and politics to finance these with funds from taxpayers or from other parts of the health care delivery system?
• If the issue is loss of earning power due to family caregiving responsibilities, Maine could emulate the five states that have already passed mandatory paid family leave, which might be a more politically acceptable solution than new and easily distinguished taxes.

Regardless of how the issue is defined, demographics say it will become more intense. By 2030, it is estimated that one in five adults will be over 65 and the worker-to-retiree ratio will be reduced by a third. Given this, collective approaches will be needed to create new ways to support the increasing number of families that—out of respect and obligation—deeply desire to care for these fragile individuals, to return the love they were given, and participate in the difficult journey of aging.

And these approaches will take money. How much, from whom and to whom will be the subject of experimentation, evidence gathering, and political power. States will need to take on these challenges. Without this experimentation, families and communities will suffer and pauperized patients will become the financial responsibility of state Medicaid programs.

Question One in Maine gives the rest of the country a taste of what’s to come. The size of the sandwich generation—and its concerns—will only grow larger in the future.