Washington News Service
May 16, 2019
(Please click through here to listen to the radio version of this story.)
SEATTLE – Washington state lawmakers passed bills this session to make the guardianship application process easier for parents.
Sterling Harders, president of SEIU 775, says her union represents thousands of parents who take care of children with intellectual and developmental disabilities.
She says she’s heard from members that when their children turned 18 the path to guardianship was complex and expensive, often requiring a lawyer to understand the process. It also differs from county to county.
Harders says two pieces of legislation are addressing these issues, easing some of the burden for parents.
«Life is difficult enough for these folks having to take care of special needs kids,” she states. “They don’t need one more thing to worry about, and so we are really hopeful that these two bills will make life just a little easier for parent providers.»
The Uniform Guardianship Act, Senate Bill 5604, will standardize the guardianship process across the state’s 39 counties and create a monitoring system and model training program.
The bill currently is on Gov. Jay Inslee’s desk.
The other measure, House Bill 1329, creates alternatives to full legal guardianship. The bill was signed in April and goes into effect at the end of July.
«In today’s world, you’re either an incapacitated person or you’re a person that is not incapacitated with full legal rights, and creating an opportunity for there to be some different options within that continuum, I think, is very important,» [Beigert] states.
Shannon Beigert, the mother of two children with very different needs, is the legal guardian for her daughter, who has an intellectual disability. Her son has autism, which manifests in challenging and oppositional behavior to her and her husband and has led to third-party guardianship of him.
Beigert says one-size-fits-all laws around guardianship don’t work well for people as different as her two children.
«In today’s world, you’re either an incapacitated person or you’re a person that is not incapacitated with full legal rights, and creating an opportunity for there to be some different options within that continuum, I think, is very important,» she states.
Beigert says she appreciates Washington state lawmakers’ capacity to help the state’s most vulnerable.
The Nation
May 13, 2019
When Americans age or need help with the basic tasks of living, they often have no one to turn to but their family members. A groundbreaking program in Washington will change that for residents of the state.
About three years ago, Ruth Egger’s father got up to go to the bathroom in the night. When he tried to get back into bed, he fell, breaking his hip. The painful recovery, during which he used a walker, sent him into a depression. “Since then, he’s gone downhill,” Egger said. He suffers from memory loss, had gallbladder surgery, and now needs help dressing, showering, and even taking medication.
Egger’s parents, both in their early 90s, are fortunate enough to be able to afford to live in an assisted-living facility in Issaquah, Washington. But their rent is climbing while their income stays fixed, forcing them to draw from their savings. That has made them unwilling to pay for the extra services available at their facility that could really make a difference for them, including help with chores and assistance for Egger’s father with his daily tasks. Without another adult present, Egger’s mother is afraid to leave her husband to go to the pool or exercise classes in case he falls again. “My mother suffers because she has to do everything,” Egger said. “I would feel so much happier if they had somebody at least once a week come in so [she] would feel like she could leave and go to the doctor or do what she needs to do and not worry about him…. It would give her some relief.” But, she adds, “They are just so frightened of not having enough money.”
Without professional assistance, Egger picks up the slack; she drives a half hour each way once a week from where she lives in Seattle to spend time with her father so her mother can leave their apartment for a bit. She’s taken over doing their bills and goes with them to doctor appointments. She feels the strain. “Emotionally, it’s extremely difficult,” she said. Egger now suffers from her own depression. “I worry about them a great deal.”
A policy about to become law in Washington State, the first of its kind, would offer relief to people in Egger’s parents’ position—and to her as well. The Long Term Care Trust Act, which passed the state legislature at the end of April and will be signed into law by Governor Jay Inslee on Monday, establishes the country’s first social-insurance program to pay for long-term care. All residents will pay 58 cents on every $100 of income into the state’s trust. After state residents have paid into the fund for ten years—three if they experience a catastrophic disabling event—they’ll be able to tap $100 a day up to a lifetime cap of $36,500 when they need help with daily activities such as eating, bathing, or dressing.
The money can be spent in a variety of ways. It could cover a home health aide to provide periodic support and care. But it could also be used to install an accessible shower in someone’s home or a ramp so they can get in and out of their front door more easily. It could cover transportation costs to and from medical appointments or to have food delivered to someone who is homebound.
The Long Term Care Trust Act will “help ensure that the caregivers who are providing this care are skilled, that they are trained, that they are certified, that they are paid fairly for the work that they’re doing,” said Harders.
If her parents had access to a fund like that, “they wouldn’t have to worry” about paying for extra help, Egger said. And Egger herself could relax just a bit. “I would know that [my mother] has someone else to help her instead of just me.”
A recently retired gerontologist, Egger has seen the need for such a policy among the clients she used to work with. One client’s husband had ALS and eventually needed a tracheostomy, which meant his trachea and airway needed to be regularly suctioned. The burden fell on his wife to be at his side constantly in case he needed care. “They didn’t have the resources to hire a nurse…so she could get a break for four hours a week,” Egger recalled. Another of her clients who used a wheelchair after a stroke couldn’t afford to add a ramp to get in and out of his house. The new fund could have enabled him to pay to build a ramp and grant him access to the outside world.
But the long-term-care fund won’t bring relief only to the elderly. A younger person who suffers an unexpected injury or illness could similarly hire someone to help him in his home. Those with disabilities, and the family members who support them, can help cover some of their more episodic needs, particularly for individuals whose needs aren’t severe enough to require living in a facility. “It expands options for people who are in need of care, aging adults, or people with disabilities,” said Sarita Gupta, co-director of Caring Across Generations, which advocated for the legislation.
The payroll premium will collect about $1 billion each year for the dedicated trust fund. “This structure will only help support the work that we’ve done here in Washington to help professionalize caregivers,” noted Sterling Harders, president of SEIU 775, which represents home health workers. While her members had already secured a $15 minimum wage, affordable health insurance, and a retirement benefit in Washington, across the country their peers mostly earn less than that and have little access to benefits. The Long Term Care Trust Act will “help ensure that the caregivers who are providing this care are skilled, that they are trained, that they are certified, that they are paid fairly for the work that they’re doing,” said Harders.
Building a constituency to demand long-term-care insurance requires educating Americans about how neglected this need currently is. Some Americans may erroneously believe that, when they reach old age, Medicare will cover the cost of any long-term care they may need. In fact, Medicare only covers medical needs, not living supports like home health aides or nursing homes. Elders with low enough incomes—depending on the state, anywhere from $6,825 to $47,139 a year—qualify for Medicaid, which does cover nursing-home costs. Those with greater resources must first spend down their savings and assets in order to qualify. They also must demonstrate they have a need for nursing-home care. And some state Medicaid programs don’t cover in-home care, while some of those that do cap the number of people who can get it.
“The system right now is quite narrow, and it requires individuals to basically impoverish themselves to be able to access any coverage,” said Elaine Ryan, vice president of state advocacy and strategy integration at the AARP. There is private long-term-care insurance, but few people have it. The cost of the premiums has become very expensive over the past decade, and people with pre-existing conditions, including dementia and Alzheimer’s, are unable to purchase a policy. So, Ryan explained, “tens of millions of Americans live their lives outside of all of those systems.”
Instead, most people rely on family members or, in some cases, friends to provide them with that care. Among adults with an aging parent who needs care, 31 percent provide it themselves, while 39 percent say another family member does. That places a tremendous burden on the caregivers. Even if someone can take paid time off from work to care for a family member—Washington State guarantees residents 12 weeks of paid family leave—some medical needs may be better handled by a professional. Not to mention it’s hard to do it alone. In one 2015 report, nearly 40 percent of caregivers said it was emotionally stressful, while about 20 percent said they experienced physical or financial strains.
“To date, elected officials have really failed to come up with a plan,” Gupta said. “In the absence of that we see families really struggling to meet their caregiving needs.”
Washington State’s policy, which Ryan calls a “breakthrough piece of legislation,” took years of dedicated, unglamorous work. “We worked with a really broad coalition,” Harders noted, which included organizations like hers representing home health workers, disability-rights advocates, and advocates for the elderly like the AARP. The mix of all those voices united behind a single request helped sway lawmakers. “It made a huge difference that they were standing together,” Gupta noted.
“What really was effective at helping unite us all is that everyone can look down the road and see that we are headed towards a crisis,” Harders explained. As the American population ages, more and more will need help. By allowing people to spend smaller amounts on the kinds of things they might need to safely and comfortably keep living at home, more people should avoid tapping Medicaid to pay for long-term care—which would not just save government funds, but give people what most of them say they want. “It will allow people to take care of those episodic periods where they need that support,” Ryan said. “Most people need something, but not all people need everything…. The idea that everyone’s going to end up in a nursing home can’t be the future that we imagine.”
The amount state residents are eligible for isn’t huge, given that it’s capped at $36,500. If a person needs a few hours of in-home care each week, that means a year or two of coverage. The sum won’t cover a full-time nursing home, which can cost $10,000 a month; a person who needs that will still need to turn to Medicaid for financial help.
“What really was effective at helping unite us all is that everyone can look down the road and see that we are headed towards a crisis,” Harders explained.
But the cap will rise automatically every year as inflation rises. The architects of the legislation were trying to find “a number adequate enough to meet people’s needs and at the same time not be catastrophic if everybody [made claims] at the same time,” Ryan explained. “To make it actuarially sound so people could be guaranteed a benefit.”
The policy’s universal structure and funding is also significant. All working people will pay into the fund through a payroll tax and then be able to claim a benefit when they need it. The same structure has “stood the test of time” with Social Security and Medicare, Ryan noted. Politically speaking, “it mattered a lot that it was set up as a social-insurance program,” Caring Across Generations’ Gupta said. And it ensures everyone will have some cushion when they need it—important given how few people are saving or planning for long-term care. “We have to shift [from] perceiving care as an individual burden to a shared responsibility we all have a stake in,” Gupta said. “This legislation in Washington is a big step toward that end.”
That differs from a failed ballot measure in Maine, which would have guaranteed universal home health care for all disabled and elderly people in the state by levying a new 3.8-percent tax on the wealthy. It’s also different than the Kupuna Care program in Hawaii, which was launched in 2017. That program similarly gives people a daily fund to cover these kinds of needs, but the money comes from the state’s general budget. That means every few years legislators have to decide how much funding to devote to it and that its capacity is limited.
Washington’s social-insurance model could spread if it’s successful after it’s enacted. Similar legislation is being considered in California, Illinois, and Michigan, Ryan said, and advocates in Maine are now looking at legislative options.
“It’s a good model that we’re going to explore in other states,” Gupta said, “and build towards a bigger picture of universal family care being a broader social-insurance program.”
Long-term care is also a facet of the Medicare for All bill put forward in Congress by Representative Pramila Jayapal in February—something the current system doesn’t cover, nor is included in Senator Bernie Sanders’s version. Jayapal’s bill would provide coverage for long-term nursing-home and care services.
Without new programs like Washington’s, families will keep shouldering huge financial and emotional burdens as they care for their loved ones, while many people will struggle to afford the kind of care they want and need. “We don’t think that in a wealthy nation like we live in that’s the way it has to be,” Gupta said. “Having more creative and bold solutions like this [is] going to be really critical.”
The Intercept
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.
“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.
Republican Reps. Drew MacEwen and Paul Harris, both original co-sponsors, told The Intercept that they support the intent of the bill but could not get behind its final provisions. “Although we had concerns about the original draft, we signed onto the bill in an effort to support the dialogue. With more people living longer, the cost of long-term care has to be addressed,” they wrote in a statement. “However, being first in the nation to create such a program, it’s important we get it right. In the end, we felt that the cost to taxpayers outweighed the long-term benefit.”
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 become the 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.”
“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.”
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.”
Yesenia has been a caregiver for more than 3 years and cares for clients through an agency. She did the MCOI program more than once, and she was excited to be returning because she enjoys the work and she enjoys using the skills she learned last time.
Tanika has been a caregiver for 17 years and she takes care of her sister.
