Maine Could Be First in US to Guarantee Universal Home Health Care

Without a system like the one proposed through Maine’s Question 1, home health care may be inaccessible for many.

[Photo: Nurse helping woman in her home.]
Personal care aides, a mostly female workforce, are one of the fastest growing occupations in Maine. Shutterstock

When voters in Maine head to the polls in November, they won’t just cast a vote for who they want to represent them in U.S. Congress or the governor’s mansion. They’ll also vote on whether to become the first state in the nation to guarantee universal home health care for people with disabilities and elderly.

Question 1 on Maine’s ballot, if passed, would create a new fund to provide daily care for people with disabilities and the elderly in their homes. It would be paid for through a new 3.8 percent tax on wealthy people making above $128,400 a year that are currently exempt from Social Security taxes. The program would be universal, available to all state residents who need help with at least one daily activity—one analysis estimated 27,100 people could be eligible—and fully paid for, costing them nothing.

“If passed, it will guarantee that every senior, every Mainer with a disability, gets the care they need to stay at home,” said Mike Tipping, communications director at Mainers for Homecare, the coalition behind the ballot measure.

Home health care can save money in the medical system by reducing more expensive hospital visits and nursing home stays, but for an individual, it’s pricey. Across the country, 30 hours of home care a week for people older than 65 eats up 79 percent of median income; in Maine, it consumes 102 percent. “It’s not something anyone can afford on their own,” Tipping said. “And it’s something that, if we’re lucky, all of us will need” once we reach old age.

But without a system like Maine’s proposed program, it’s not care everyone can get. “We want to make sure it’s not just the wealthy that are able to afford being taken care of in their homes .… It shouldn’t be a luxury,” said Jonathan Schleifer, executive director of the Fairness Project, which is supporting the ballot measure in Maine. “It’s a right that almost everyone should have access to .… Everyone, rich or poor, deserves to be treated with dignity and respect.”

It makes sense for the idea to germinate in Maine. The state has the distinction of having the oldest population in the country—the median age is 44.6, well above the national median of 38. “We need to deal with that demographic problem,” Tipping said. “We also need to make sure that people can stay at home as they get older.”

Meanwhile, personal care aides, a mostly female workforce, are one of the fastest growing occupations in the state. But nationally, it’s a job that pays a median of only about $11 an hour, barely above Maine’s minimum wage. Across the country, few providers of home health care get benefits from their employers and nearly half rely on public programs like food stamps or Medicaid to get by.

To address these problems, the initiative would create a Universal Home Care Board, including representatives of the care workers themselves, that would ensure decent wages, benefits, and working conditions for providers. “We want to create good jobs for people doing vital work,” Tipping said, “and solve a need that is here now and increasing in scope and severity going forward.” By improving pay and working conditions, supporters of the measure also hope it will attract more people to the profession, which would help address the current provider shortage that means an estimated 6,000 hours of needed care goes unstaffed in the state each week.

“We need to ask ourselves, do we want this growing industry to underpay and undertrain their workers, or is the best thing for our parents and our grandparents [that it] be a well-trained and well-paid workforce?” Schleifer asked.

But while Maine’s pinch may be particularly acute, the same problems are metastasizing in the rest of the country as well. An estimated 70 percent of Americans over the age of 65 will need living assistance at some point, and that group is on track to grow: By 2040, people 65 and older will account for almost 22 percent of the population, an increase from 13 percent in 2010. According to a 2016 poll, most would prefer to receive care in their homes.

“If we don’t find solutions to deal with an aging population, we’re going to be overwhelmed when the problem arrives,” Schleifer said. “What’s exciting about the campaign in Maine is that they’re looking to solve a problem that is on the horizon today.”

Tipping pointed out that Maine’s motto is “dirigo,” or “I lead.” With this ballot measure, the state may soon be a leader in creating a new model for home health care that other states can borrow from. “We certainly can be an example to the rest of the country,” he said.

“There weren’t really any real big, bold ideas working their way through the federal government or even in Maine,” Schleifer noted. The advocates in the state “took it upon themselves to design a really groundbreaking, innovative policy.”

It’s not a coincidence that, if the program becomes law after the election, it’ll have been enacted through the ballot, instead of the legislature. “Ballot initiatives aren’t constrained by the conventional wisdom of people in politics,” Schleifer pointed out. “Initiatives enable voters to imagine what’s possible and make it real.”

All four gubernatorial candidates in the primary opposed it, including Democratic candidate Janet Mills, who is now running against Republican Shawn Moody. All the candidates rejected it because it would raise taxes on some residents; Mills said as governor she would “do what was right for Maine and not do merely what is politically correct or expedient.”

That could portend challenges if it passes, given that term-limited Gov. Paul LePage (R) has stymied Medicaid expansion, passed by Maine voters in 2017, by refusing to implement it and vetoing a bill meant to fund it. But to head off such a problem, the measure is written so that the money raised to fund the program would be put in a trust fund that couldn’t be used by the governor or legislature for any other purposes.

Opposition to the measure isn’t just found among people running for the governor’s office. A political action committee called Stop the Scam has been formed to fight against it. The group, as the name suggests, portrays the measure as a scam and is backed by chambers of commerce across the state, hospital associations, and a hodgepodge of other business interest groups. Major newspapers, including the Portland Press Herald and the Bangor Daily News, have come out against the measure. The former laments that it doesn’t address other kinds of health care delivery—like nursing homes and assisted living—and the creation of an independent board to run the new system; the latter argues what it deems to be “new taxes, new bureaucracy, and minimal oversight.”

But if the measure beats these odds and passes, the idea could spread. “I know that other states are watching,” Schleifer said. After the Maine People’s Alliance helped get Medicaid expansion passed through a ballot measure in 2017, it inspired advocates in states like Idaho, Montana, Nebraska, and Utah to do the same. Even the federal government, they hope, might take notice and contemplate doing the same across the country.

In fact, Tipping and Schleifer’s groups’ work on Medicaid expansion together inspired their collaboration on this initiative. The idea of creating a universal home care program had been discussed for years, but after the Medicaid success in 2017, the Maine People’s Alliance went back to the Fairness Project. “They said, ‘We’ve got this idea that’s really radical [and] innovative, would you want to support it?’ We said, ‘Absolutely,’” Schleifer said. The Fairness Project has given them money and support.

The effort began in earnest on the ground a year ago when hundreds of volunteers began gathering signatures to put the measure on the ballot. They stood outside in the parking lots of churches, supermarkets, and polling places, sometimes in the middle of December, to ask people to sign.

“It has been emotional,” Tipping said. “I have never had so many people tell such heartbreaking stories when they’re signing a petition. Everyone has a caregiving story.” For some, it’s taking care of ill or aging parents to keep them out of a nursing home; for others, it’s caring for a loved one. “It’s an issue that touches almost every family,” he said.

The effort also drew a diverse coalition of more than 40 organizations that lent their support, including veterans’ groups, disability and seniors’ rights organizations, a teacher’s union, and the Maine Council of Churches. At a recent event at a church, Tipping recalled the head priest pulled him aside to tell Tipping how he had gone back to work as a priest at age 75 because he’s the sole caregiver for both his mother and his daughter who has Down syndrome. “It’s an issue that touches on everyone,” Tipping said.

Now it’s all about getting the word out before the election. “We’re knocking on doors all over Maine making sure people know about Question 1 and what it means,” Tipping said.

“It’ll be an incredible failure of our system if only wealthy people are able to afford to age with dignity in their homes. It’s a looming challenge best faced now,” Schleifer added. “This ballot initiative is on the cutting edge of providing that for people and making it a reality.”