As Election Day draws near, a ballot initiative in Maine to provide universal home care is shining a spotlight on the inadequacies from the nation's long-term care system.
The essential problem: Although most seniors want to live in your own home when their health begins to decline or they become frail, programs that help them achieve this are narrow in scope, fragmented and poorly funded.
Medicare's home care benefits are restricted to seniors and adults with disabilities who're homebound and want 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 so they cover only a small slice of the older population.
That leaves countless middle-class families struggling to figure out what to complete when an older relative develops a significant chronic illness, such as heart failure, or suffers an acute medical crisis, like a stroke.
“We're going to have the largest older population we've ever endured, that is have to exponentially more care than has ever been needed before. And we aren't prepared,” said Ai-jen Poo, co-director of Caring Across Generations, a company trying to expand long-term care services across the U.S.
Maine, with nearly 20 % of its residents age 65 and older, is exploring a radical response to this dilemma that's being monitored by other states.
Its ballot initiative, referred to as Question 1, proposes that home care services be accessible to all residents, at no cost, no matter income. If enacted, it might end up being the first such enter in the nation.
Adults could be eligible for the program once they need assistance with a minumum of one “activity of daily living”: walking, bathing, dressing, eating, toileting, personal hygiene, and becoming in or up out of bed. Services covered would come with 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 could be granted to family caregivers. Seventy-seven percent of program funds would be forwarded to home care aides, in a proceed to strengthen this workforce.
More than 21,000 people could be eligible for a home care services underneath the new program, in addition to about 5,600 people who already receive services through Maine Medicaid along with other state programs, based on the most definitive analysis to date, published last month by researchers in the University of Southern Maine's Muskie School of Public Service.
Funding for that new program will come from a new 3.8 percent tax on wages and non-wage income that's not taxed by Social Security: a threshold of $128,400 per part of 2021. Between $180 million and $310 million could be raised annually, based on various estimates. This program would be fully implemented by January 2022.
The political battle over Question 1 is fierce, although nobody questions the requirement for affordable home take care of seniors and individuals with disabilities. In AARP's newest “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 the wife, Debbie, 64, that has multiple sclerosis.
“Since Debbie includes a progressive form of MS, her needs are likely to increase,” said Alexander, his wife's sole, unpaid caregiver along with a supporter of Question 1. “We brought in some paid help in the past, but we couldn't do that for very long: It's too expensive.”
Alexander really wants to keep Debbie in your own home as long as possible, but he worries concerning the physical demands and emotional consequences. “I have chronic clinical depression and periodically I go into the dumps, quite a distance,” he admitted. “When that occurs, it's hard that i can motivate myself to do anything.”
Also, it's generally accepted in Maine that something needs to be done in regards to a severe lack of home care aides – an issue surfacing nationwide. Each week, 6,000 hours of home care services that have been authorized aren't delivered by Maine agencies due to staff shortages, that are particularly acute in rural areas, based on the Maine Council on Aging.
Despite these areas of consensus, however, disagreements surrounding Question 1 are intense and many Maine healthcare and business associations oppose it, along with all four candidates for governor.
Taxes really 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 just 3.4 % of individuals earning income in Maine would be affected, based on a September report.
Citing ambiguous language in the initiative, opponents argue that families earning more than $128,400 would be also susceptible to the tax hike, significantly expanding its impact. A pressing problem is that higher taxes would discourage doctors, nurses along with other professionals motionless to or residing in Maine.
“We possess a workforce crisis already, which increase – which would make our tax rate one of the highest in the united states – would be a disaster,” said Jeffrey Austin, vice president of government affairs at the Maine Hospital Association.
The program is too expansive and dear to be sustained long term, other opponents say. “We have limited public resources in Maine and people ought to be focused on the folks 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 an argument, AARP Maine, that has not taken a stand on Question 1, expressed reservations. “Using a payroll tax to pay for HCBS [home and community-based services] is definitely an untested policy at the local level,” it noted.
Also controversial is the board that would be created operate the home care program. The initiative requires nine members (three from home care agencies, three direct care workers and three service recipients) elected by constituent organizations to supervise the program.
“The board would not be accountable to the governor or the legislature, and Maine taxpayers would have no say over how their money has been spent,” said Jacob Posik, an insurance policy analyst at the conservative-leaning Maine Heritage Policy Center.
Supporters note that an advisory committee would come with state officials from multiple agencies. The board's structure is supposed to be “responsive to folks providing and finding the care,” said Mike Tipping, communications director for the Maine People's Alliance, a grass-roots organization that's spearheading Question 1 which helped pass a 2021 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 let me know how much something like this would have changed their lives,” said Kevin Simowitz, political director for Caring Across Generations.
One of those 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 is able to purchase aides that care for his 38-year-old daughter with Down syndrome and the 95-year-old mother, who has suffered from kidney disease, falls, wounds that didn't heal and pneumonia in the past several years. “I is going to do whatever I need to have them home,” he said.
Originally, Cross looked by care agencies for help, however with rates of $23 to $25 per hour “that was more than I possibly could afford,” he explained. Today, three local residents provide a lot more than 50 hours of care per week for $12 to $15 an hour or so.
“I'm blessed that i am able to work and also to hire all these individuals to stop us going,” Cross said. “But several members of my congregation are older and do not have the family resources we have. This could result in the quality of the lives better.”