Originally published in The Intercept on April 26, 2019.
Washington state lawmakers on Tuesday passed the nation’s first long-term care benefit program, which would provide residents with up to $36,500 to pay for costs like caregiving, wheelchair ramps, meal deliveries, and nursing home fees. Jay Inslee, Democratic governor and 2020 presidential candidate, has said he intends to sign the Long-Term Care Trust Act into law.
The measure is hailed as a monumental achievement not only for Washingtonians, but also for advocates working nationally to tackle the rising and formidable costs of care work and old age, something that’s become only more pressing as the baby boomer generation heads into retirement. The Long-Term Care Trust Act comes on the heels of a novel cash benefit program Hawaii launched in 2017 that distributes $70 a day for up to 365 days to family caregivers. A growing number of states have passed paid sick leave policies over the last five years, and more presidential candidates are elevating the issue of child care and how to afford it. Washington Rep. Pramila Jayapal’s new Medicare for All bill even includes coverage of long-term care, something not currently provided by the federal insurance program.
The ultimate goal, advocates say, is some kind of universal family care, a comprehensive social infrastructure to support all the varied costs of care work from birth to death. “That’s our North Star,” said Sarita Gupta, co-director of Caring Across Generations, a national campaign that launched in 2011. “We have really been trying to help people go from seeing care work as an individual burden to a shared responsibility that we’re all going to face.”
With the Long-Term Care Trust Act, taxpayers expect to save $3.9 billion in state Medicaid costs by 2052. The bill had bipartisan support early on, including three Republican co-sponsors, but it was approved largely along party lines in the Democratic-controlled legislature. Advocates for the bill said that Republicans voted against it for political reasons amid heated budget negotiations, and not because they disagreed with it in substance. Republican Reps. Drew MacEwen and Paul Harris, both original co-sponsors, did not return request for comment.
In some ways, it makes sense that the groundbreaking long-term care legislation would originate in Washington, which has been leading the country in progressive policies. In 2013, the small town of SeaTac, which surrounds the Seattle-Tacoma International Airport, voted to increase its minimum wage to $15 an hour. This marked the first real policy win for the nascent Fight for $15 movement. Seattle would becomethe first major U.S. city to approve a $15 minimum wage a year later. In 2016, voters approved a state ballot measure to raise Washington’s minimum wage and establish a paid sick leave program. The same year, SEIU 775, which represents 45,000 long-term care workers in Washington and Montana, negotiated a home care worker retirement benefit, the first of its kind in the nation.
“We first started talking about long-term care about 10 years ago, because the funding system is really broken and because we’re focused on lifting caregivers out of poverty,” said Sterling Harders, president of SEIU 775, which helped push for the bill. Harders said the union’s work began with commissioning studies, followed by many years of slow coalition-building. “I think it’s easy to forget on days like this when I’m jumping up and down celebrating our victory that we’ve essentially been working on this for the past decade, and intensely for the past three years,” she said. “This is really the end of a long road.”
The bill works like this: Beginning in 2022, workers will pay a modest monthly payroll tax, 58 cents for every $100 they earn in income. The per capita average income in Washington is about $37,000, meaning that the average monthly contribution would be about $18. Those who pay into the program for three years, or for a total of 10 years including five consecutive years, will be able to access the benefit, which, at present, maxes out at $36,500. In 30 years, as it’s indexed for inflation, the benefit will be more than $88,000.
The $36,500 could pay for respite care, in-home caregiving, time in a nursing home or assisted living facility, home modifications like constructing a wheelchair ramp, and other elderly care expenses.
The legislation was first considered by lawmakers in 2018, but at the last minute, the state’s chapter of the American Association of Retired Persons, or AARP, withdrew its support, citing disputes over details like eligibility for qualifying as a caregiver. Members of civil rights, disability, senior, and health care groups who organized under the banner of Washingtonians for a Responsible Future reconvened this year to hash out compromises.
“I think what changed this year is that coalition members just met more and worked more closely to hear each other’s concerns,” said Janet Kim, a spokesperson for Caring Across Generations. “The resulting policy is more comprehensive and flexible than what was considered in 2018.”
Legislators worked on the bill with a few key facts in mind: Caregiving is an increasingly stressful burden for not only seniors, but also for their family members. Nationally, relatives spend an average of 20 percent of their own money on caregiving costs, according to the AARP, and often have to leave their jobs, sacrificing hundreds of thousands of dollars in income and benefits. A 2018 Associated Press-NORC Center for Public Affairs Research poll found that approximately two-thirds of adults support a long-term care program like Medicare, including 76 percent of Democrats and 56 percent of Republicans.
In addition, legislators grappled with the mounting strain on the state’s budget. Seventy percent of Americans end up needing long-term care after turning 65, and more than 90 percent of people do not have private long-term care insurance. While Medicare does not cover the cost of most long-term care services, many individuals don’t realize this until it’s too late. Medicaid, however, does cover long-term care services, but to access it, individuals have to deplete their assets until they have less than $2,000 in savings, a system that literally incentivizes going into poverty. As Washington’s population gets older, actuaries have projected that the state’s Medicaid-funded long-term care program would almost double to $4.01 billion annually by 2030.
Ruth Egger, A 65-year-old retiree in Seattle and a part-time caregiver for her parents, has advocated for the bill since it was first introduced. Though she and her parents, who are in their 90s, are unlikely to directly benefit from the Long-Term Care Trust Act, she said her personal experience as a caregiver and her professional experience as a social worker motivated her to fight for the legislation. She personally testified in support of the bill last year and this year before the Washington State Legislature.
Egger’s father fell and broke his hip a few years ago, which brought on debilitating depression. “My father temporarily lost the ability to dress himself, and if he had had access to this benefit, he would have been able to pay for an aide to come help him,” she said. “It was exhausting watching him trying to figure out how to get his clothes on, and at that point, it would have been really beneficial if he had access to this extra money.”
Egger also stresses that so-called orphan elders — single seniors, or seniors who never had children or have children who live across the country or abroad — are also in particular need for long-term care assistance. “They get old and they have no support to help them, and they may need someone to come in twice a week and help them bathe or set up their medication,” she explained.
Washington’s benefit could also prove beneficial to the long-term care insurance industry. “Those companies didn’t expect people to live so long and to pay out so much, so fewer companies are writing those [long-term care] plans,” said Egger. Some experts think that the Long-Term Care Trust Act will make the economics of supplemental long-term care insurance plans more feasible, similar to the supplemental private Medicare insurance that 13 million Americans currently pay for. A recent article in Forbes reported that insurance industry officials expressed interest “in developing products” to supplement what Washington state is proposing.
Ultimately, Harders sees the Long-Term Care Trust Act as not just providing a needed economic benefit, but also as one more step toward elevating the field of caregiving, which is largely dominated by unpaid or low-wage women and people of color.
“Caregivers are really members of a larger health care team; they spend hours and hours with the person they’re taking care of, they know when that person has changes in their health condition, when someone is losing weight, when someone gets dizzy, but it’s really a struggle for caregivers to be taken seriously as health care professionals,” Harders said. “That’s part of why this bill is so important for our union because we feel this is a step down the path of making sure caregivers are given the respect they deserve.”