KENNEBUNK, Maine – Rachel Phipps renovated the barn in her family’s backyard a decade ago to make an apartment for her mother. It was nice to have her close by as she got older. Then last year, her 86-year-old mother had a heart attack. Suddenly she needed round-the-clock care.
“We knew this time was coming,” said Phipps, a social worker. She and her husband suddenly found themselves juggling full-time jobs and long commutes along with cleaning, cooking and attending doctors’ visits with her mother – all while helping their teenaged daughter apply to college. “I feel like we are barely staying above water,” she said.
This November, she is supporting a statewide ballot measure that aims to help families like hers through a first-of-its kind universal home care program that would provide assistance to seniors and people with disabilities.
The measure, which would be funded by a new 3.8 percent tax on high-income Mainers, represents the most far-reaching statewide effort to date to address what many analysts describe as a looming caregiving crisis, as baby boomers age at a rate faster than the pool of workers who can care for them is expected to grow. The vast majority of Americans say they would like to live at home as they age – but currently there is little social safety net for families who are tending to the daily, long-term needs of someone who is elderly or disabled. Many Americans leave the workforce or spend heavily to provide care for their family members at home or in residential care.
Hawaii in 2017 approved a measure to provide up to $70 a day to support family caregivers who also work outside the home, a benefit that can be used for a home health aide or adult day care. Maine’s measure would go further by establishing a fund that would ensure every family has resources to care for a loved one at home. About 27,000 people in Maine would be eligible for the universal program, compared to about 5,600 people who already have access to publicly funded community-based services, according to a study of the initiative by the Muskie School of Public Service at the University of Southern Maine. The program would cover anyone with a disability or who is 65 or older and needs help with at least one activity of daily living, such as eating or bathing.
Advocates say Maine – the nation’s oldest state – can set a precedent for the nation. The median age in Maine is 44.6, compared to 38 for the nation, according to the 2017 American Community Survey. And nearly 20 percent of Maine residents are 65 or older, a rate not expected to be achieved nationwide until 2032. At the same time, Maine is one of two states where there are more deaths than births each year, and leaders are looking for ways to stem an out-migration of working adults.
Proponents say in addition to helping the state’s graying population, the home care plan – Question 1 on the ballot — would also offer a boost to the home care workforce, by increasing pay and allowing workers to unionize, creating a category of jobs that would enable more young people to stay and work in Maine. Currently, low wages and poor working conditions for home care workers contribute to annual turnover rates exceeding 50 percent.
“We have such an acute crisis facing us, we need a comprehensive solution,” said Mike Tipping, communications director for the Maine People’s Alliance, which is leading the universal home care campaign. “I think this is an example of where we lead because we have to.”
Business interests across the state, including the Maine Association of Realtors, Maine’s Chamber of Commerce, and the Maine Hospital Association are opposing the measure. Opponents say that increasing income taxes to some of the highest rates in the nation would have a negative effect on the economy and actually discourage people from living in Maine.
They also criticize the proposed regulatory scheme, in which the new fund would be managed by a board representing personal care agencies, service providers, and the people receiving services – rather than a government agency.
“This proposal is not well thought through at all,” said Newell Augur, a lobbyist for the home care and hospice alliance and co-chair of the opposition “Stop the Scam” campaign. “There’s no state or legislative oversight.”
Critics contend that Maine’s relatively low threshold for bringing ballot questions to voters makes it too vulnerable to outside interests. They have painted the home care initiative as a plan hatched by national activists and funded heavily by out-of-state money including political action committees connected to liberal billionaire George Soros. “Maine is a good market if you’re an out-of-state entity and you want to drive an issue,” said Terry Brown of the conservative Maine Heritage Policy Center.
The three major gubernatorial candidates have also come out against the measure, including Democratic state attorney general Janet Mills, maintaining that the complicated issue would be better handled by the legislature. Similar efforts have stalled in the legislature in the past.
Progressive activists, for their part, are hoping to continue a trend of pushing through legislation by referendum, working around a deadlocked legislature in a decidedly purple state.
Jo Trafford donned her well-worn pink hat from the 2016 Women’s March to knock on doors in the freezing rain on a recent October Saturday. The veteran canvasser ticked off ballot initiatives she’s helped win – including legalizing gay marriage in 2012 and increasing the minimum wage in 2016. Last year she canvassed to expand access to Medicaid to more than 70,000 low-income people in Maine. That also passed, though implementation has stalled as Republican Gov. Paul LePage has refused to expand the program.
Trafford, a retired special education teacher, said the need for a universal home care fund is paramount, and not just for seniors. She taught many students with disabilities during her career, she said, who only received a fraction of the home-based care they needed.
But throughout the morning, many of the voters she talked to were concerned about the fine print of the law – how the fund would be overseen and paid for. Some zeroed in on confusion raised by opponents of the measure about who ultimately would be affected by the new tax.
“Is it clearly worded on the question?” one woman asked.
“I think so,” said Trafford hesitantly before the woman quickly interjected.
“You see what I mean?” she shrugged.
The law’s authors say the new 3.8 percent tax is intended to affect individuals with an adjusted gross wage income above $128,400 a year, which is the maximum wage subject to social security taxes. But the secretary of state and the legislature’s fiscal office have interpreted the proposed law to mean that the new tax would apply to combined household income, affecting individuals earning much less. Resolving this question has become a key point of contention.
At another home, Trafford encountered a woman who was trying to usher an older
woman inside the door while keeping the canvassers at bay. She waved off their message about bringing resources to elder care and closed the door.
Advocates say that many people have never thought in a political way about what they see as a personal family issue. But it’s an issue that resonates as they begin to learn more about it, said Janet Kim, a communications director with Caring Across Generations, a national advocacy group. “Everyone has care stories. Everyone can relate.”
Phipps said she never thought of herself as a caregiver to her mother, even as she started helping her with basic tasks, such as bathing, and leaving work early to attend medical appointments.
Now she says she’s becoming more aware of how she’s not alone.
“This is a typical progression,” she said. “People look at their lives and see it as individual problem, but it’s a social problem.”
Michael Alison Chandler is managing editor at MemoryWell. Previously, she was a staff writer at the Washington Post for 13 years.