Maine to vote on making home care affordable
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. 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.