As Election Day draws near, a ballot initiative in Maine to provide universal home care is shining a spotlight on the inadequacies of the nation's long-term care system.
The essential problem: Although most older adults want to live at home when their health starts to decline or they become frail, programs that help them do so are narrow in scope, fragmented and poorly funded.
Medicare's home care benefits are limited to seniors and adults with disabilities who are homebound and need skilled services intermittently. State Medicaid programs vary widely but are generally restricted to people at the lower end of the income ladder. Long-term care insurance is expensive and covers only a small slice of the older population.
That leaves millions of middle-class families struggling to figure out what to do when an older relative develops a serious chronic illness, such as heart failure, or suffers an acute medical crisis, such as a stroke.
"We're about to have the largest older population we've ever had, which is going to need exponentially more care than has ever been needed before. And we're not prepared," said Ai-jen Poo, co-director of Caring Across Generations, an organization working to expand long-term care services across the U.S.
Maine, with nearly 20 percent of its residents age 65 and older, is exploring a radical response to this dilemma that's being closely watched by other states.
Its ballot initiative, known as Question 1, proposes that home care services be available to all residents, at no cost, regardless of income. If enacted, it would become the first such program in the nation.
Adults would be eligible for the program when they need help with at least one "activity of daily living": walking, bathing, dressing, eating, toileting, personal hygiene, and getting in or out of bed. Services covered would include care from aides and companions; speech, physical and occupational therapy; counseling; home repairs; transportation; respite care; devices for people with disabilities; and even, occasionally, small rent subsidies.
Stipends would be granted to family caregivers. Seventy-seven percent of program funds would be directed to home care aides, in a move to strengthen this workforce.
More than 21,000 people could qualify for home care services under the new program, in addition to about 5,600 people who already receive services through Maine Medicaid and other state programs, according to the most definitive analysis to date, published last month by researchers at the University of Southern Maine's Muskie School of Public Service.
Funding for the new program would come from a new 3.8 percent tax on wages and non-wage income that isn't taxed by Social Security: a threshold of $128,400 per person in 2018. Between $180 million and $310 million would be raised annually, according to various estimates. The program would be fully implemented by January 2022.
The political battle over Question 1 is fierce, although no one questions the need for affordable home care for seniors and people with disabilities. In AARP's most recent "Long-Term Services and Supports State Scorecard," Maine ranked last in the nation on affordability of home care.
Among thousands of people affected are Rick Alexander of Blue Hill, Maine. 70, a retired school librarian, and his wife, Debbie, 64, who has multiple sclerosis.
"Since Debbie has a progressive form of MS, her needs are going to increase," said Alexander, his wife's sole, unpaid caregiver and a supporter of Question 1. "We brought in some paid help years back, but we couldn't do that for very long: It's too expensive."
Alexander wants to keep Debbie at home as long as possible, but he worries about the physical demands and emotional consequences. "I have chronic clinical depression and periodically I go down into the dumps, a long way," he admitted. "When that happens, it's hard for me to motivate myself to do anything."
Also, it's generally accepted in Maine that something needs to be done about a severe shortage of home care aides — a problem surfacing nationwide. Each week, 6,000 hours of home care services that have been authorized aren't delivered by Maine agencies because of staff shortages, which are particularly acute in rural areas, according to the Maine Council on Aging.
Despite these areas of consensus, however, disagreements surrounding Question 1 are intense and most Maine health care and business associations oppose it, along with all four candidates for governor.
Taxes are a key point of contention. Question 1 supporters argue that a relatively small number of high-income individuals would pay extra taxes. The Maine Center for Economic Policy estimates that only 3.4 percent of people earning income in Maine would be affected, according to a September report.
Citing ambiguous language in the initiative, opponents argue that families earning more than $128,400 would also be subject to the tax hike, significantly expanding its impact. A pressing concern is that higher taxes would discourage doctors, nurses and other professionals from moving to or remaining in Maine.
"We have a workforce crisis already, and this increase — which would make our income tax rate among the highest in the country — would be a disaster," said Jeffrey Austin, vice president of government affairs at the Maine Hospital Association.
The program is too expansive and expensive to be sustained long term, other opponents say. "We have limited public resources in Maine and those should be dedicated to the people most in need, fiscally and physically," said Newell Augur, a lobbyist for the Home Care & Hospice Alliance of Maine and chair of the "NO on Question One/Stop the Scam" campaign.
In a statement, AARP Maine, which has not taken a stand on Question 1, expressed reservations. "Using a payroll tax to pay for HCBS [home and community-based services] is an untested policy at the local level," it noted.
Also controversial is the board that would be established to operate the home care program. The initiative calls for nine members (three from home care agencies, three direct care workers and three service recipients) elected by constituent organizations to oversee the program.
"The board wouldn't be accountable to the governor or the legislature, and Maine taxpayers would have no say over how their money is being spent," said Jacob Posik, a policy analyst at the conservative-leaning Maine Heritage Policy Center.
Supporters note that an advisory committee would include state officials from multiple agencies. The board's structure is meant to be "responsive to the people providing and receiving the care," said Mike Tipping, communications director for the Maine People's Alliance, a grass-roots organization that's spearheading Question 1 and that helped pass a 2017 ballot initiative expanding Medicaid in Maine, currently tied up in the courts.
For all these policy disputes, it's clear that Question 1 has considerable emotional resonance. "I've never had people cry signing a petition and tell me how much something like this would have changed their lives," said Kevin Simowitz, political director for Caring Across Generations.
One of the people who's spoken out publicly is the Rev. Myrick Cross, 75, of St. Patrick's Episcopal Church in Brewer.
Cross works part time at the church so he can pay for aides that care for his 38-year-old daughter with Down syndrome and his 95-year-old mother, who has suffered from kidney disease, falls, wounds that didn't heal and pneumonia in the past several years. "I will do whatever I need to keep them home," he said.
Originally, Cross looked to home care agencies for assistance, but with rates of $23 to $25 per hour "that was more than I could afford," he said. Today, three local residents provide more than 50 hours of care a week for $12 to $15 an hour.
"I'm blessed that I'm able to work and to hire all these people to keep us going," Cross said. "But several members of my congregation are older and don't have the family resources that we have. This would make the quality of their lives better."
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This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.