Long-term care takes a toll on caregivers. Will the WA Cares Fund help?

Angela Petersen always imagined spending her retirement traveling with her husband of over 30 years. But that changed nearly three years ago, when Chris Petersen had two strokes and was diagnosed with dementia. 

Now, the Tukwila resident’s life revolves around caring for her 63-year-old husband — from brushing his teeth, to putting on his sneakers, to making sure he drinks water and swallows his pills. It’s an extraordinary change for the couple, who met in high school, exercised daily and raised two college athletes.

After the first stroke, Angela, 62, left her job as an office supervisor with the Department of Defense, just missing the 30-year retirement mark. She worked part time as a substitute teacher, but left that job after her husband accidentally drove their car into the garage while she was at work.

Between his disability and her retirement payments, they get about $3,000 each month, putting most paid assistance out of the question, she said. In Washington, a vetted in-home aide can cost upward of $35 to $50 an hour, and adult day care or health services can cost between $50 and $100 a day, according to Erica Farrell, a senior clinical manager for the Alzheimer’s Association’s Washington state chapter.

But as tight as money is, Angela Petersen’s time is even more constrained. Chris, who is largely nonverbal, requires constant supervision. Alarms were installed on the doors after he quietly left the house several times and went missing.

If Petersen needs to leave the house, she has to find someone to watch Chris or find a way to take him with her. That has led to a mix of awkward and scary situations, she said, like the time she had to leave in the middle of a hair appointment to search for him, or when he became agitated during a red-eye flight.

There are good days and bad days, but Petersen says the entire experience has been frustrating and isolating. Some days, she feels selfish for wanting to get her nails done. Other times, resentful. 

“I don’t want anything to happen to him,” Petersen said. “But I also want to live a life.”

In many ways, the Petersens fall into the exact category of people Washington state’s fledgling long-term care insurance program is promising to help. The family has too many assets to qualify for Medicaid assistance, but not enough resources to hire paid help — leaving a gap that only Angela can fill.

The WA Cares Fund was passed in 2019 to provide a $36,500 lifetime benefit for people, who have difficulty living on their own, to pay for a wide swath of services including equipment, transportation and a home health aide. 

While the program is years away from paying out benefits and won’t cover people who have already retired, lawmakers in support of the policy say the insurance program will keep people from falling into poverty as the number of residents 75 and older is expected to double in Washington over the next 20 years. 

However, the program, funded by Washington employees with a 0.58% payroll deduction, has been embroiled in criticism and political fights. Some see the program as an unnecessary tax and others point out certain people will pay into the program but never see benefits — including near-retirees and people who live out of state. 

In December, facing a ballot initiative to potentially gut the program, Gov. Jay Inslee and Democratic lawmakers pledged to delay implementing the payroll tax until 2023. And while the initiative ultimately failed, House lawmakers have already voted to do so and allow additional people to opt-out of the program.

The toll of caregiving

In the U.S., most people pay out of pocket for long-term care for older people or anyone with a chronic illness or disability. When the WA Cares Fund is implemented, it will be the first public long-term care insurance program of its kind.

While Medicare pays for some rehabilitative services following an accident or illness, it does not cover long-term care. Medicaid pays for some long-term care but only for those who meet a strict list of qualifications within a certain time period. The process can get so complicated that families often consult specialized lawyers. 

Nearly 830,000 people in Washington provide some form of unpaid care for loved ones, fulfilling over 80% of the state’s long-term care needs, according to a legislative report. 

Unpaid care disproportionately burdens women and women of color, who often become caregivers earlier than their white counterparts, according to research conducted by AARP. Because paid long-term care is expensive, women often leave their jobs or retire early to become caregivers, which translates to an estimated $324,000 in lost lifetime wages and Social Security and pension benefits, according to a 2011 MetLife study.

Those losses in productivity from women in their prime earning years are exactly what prompted countries across Europe and Asia to institute programs that care for older residents, said WA Cares Fund Director Ben Veghte. 

“They know it’s terrible for their GDP to have women in their 40s and 50s staying home doing work that someone else could do for $15 an hour,” he said. 

Caring for a loved one, even with paid resources, was a “trip through hell,” said Nancy Simsons, 73, a retired teacher in Green Lake. When her husband died in 2016 after living with dementia for five years, it felt as if he died for a second time, she said. 

Her husband needed help with any movement, and the doorways of their home were too narrow for a wheelchair. He spent his final years with full-time caregivers — first, at an adult family home that cost $6,500 a month, then at an apartment that cost $10,000 a month.

Simsons managed to pay for his care, which totaled nearly $500,000, with his savings and her family inheritance. It was lucky he was not lucid enough to know how at risk their finances were, she said.

Finding facilities and caregivers for older adults who don’t speak English is especially difficult and expensive, said Beacon Hill resident Lynda Wong, 50. Her parents immigrated to Seattle from Hong Kong in 1975 and worked in sewing factories and restaurants, where they never needed to learn English.

This year they will turn 90. Her father has difficulty with mobility from a stroke and her mother is not strong enough to clean or cook. While Wong pays $5,200 a month for an aide who can speak their dialect of Chinese to come by for five hours each day, she worries for other immigrants who do not have children to advocate for them.

“My parents and their friends have overcome historical challenges to build productive lives here,” she said. “It is not for lack of bravery that they fall short.”

Will WA Cares be enough for most people?

Most people — around 7 in 10 — require some degree of long-term care at some point after they turn 65.

It’s a statistic widely cited by the WA Cares Fund. But what’s not clear is how many of those people will struggle with daily life enough to qualify for the benefit, how long they will need care and how far the $36,500 benefit will go in assistance.

Researchers from Boston College attempted to use existing data to break down the country’s population by how much care they require in terms of duration and intensity after they turn 65.

Research assistant Patrick Hubbard said what they found was that long-term care needs — including from a relative dropping off groceries to paying for a nursing home —  vary widely. 

The research shows 17% of people won’t ever require care, while 22% require minimal help with tasks like cooking, 38% need help with bathing or eating while recovering from a medical emergency like a heart attack or stroke for up to two years, and 24% need intense care for three or more years due to dementia or cancer.

In order to qualify for WA Cares benefits, individuals must need assistance with at least three activities of daily living, though the fund has yet to formally define them. (Long-term care programs funded by Medicaid in Washington use a list of 11 activities, including dressing, medication management, toileting and bathing.) 

While the fund has yet to figure out how that provision will be applied, director Veghte said the goal is to ensure care is available to those who truly need it.

Hubbard said $36,500 won’t be enough to completely cover anyone’s needs, but would likely supplement a family’s personal resources.  

Petersen, who wasn’t familiar with the WA Cares Fund, said while the program sounds like a good idea, the money wouldn’t change her situation. 

Ideally, she would want enough respite care for her husband so she could work some shifts as a substitute teacher. She misses interacting with other people, Petersen said. 

When the WA Cares Fund was passed, Wong said she thought it barely addressed the costs of aging in the U.S., and the most vulnerable aging populations who don’t have a support system. 

“I remember thinking, ‘This is kind of useless,'” she said. “I have a pretty good idea of what [long-term care] costs are and this is a drop in the bucket.”

Farrell, with the Alzheimer’s Association, works with people with dementia, who are often those requiring the most costly care. She said the additional savings is a win, and will allow those who need a break to pay for respite care.

“I think it comes back to your quality of life and having the ability to have more freedom,” she said.

Bainbridge Island resident Kymmberly Myrick, 58, whose husband needed long-term care help toward the end of his life due to pancreatic cancer, said she thinks people who challenge the WA Cares Fund or Obamacare have not had to deal with the U.S. health care system or a loved one at the end of their life. 

“People do not understand that their parents aren’t going to die in their sleep. They’re going to get sick, somebody is going to need help and someone is going to have to quit work,” Myrick said. “Usually it’s women — a daughter or wife.”

Simsons said she also supports the WA Cares Fund, adding that the money would have given her some breathing room each month. 

“It is unconscionable that the richest country in the world has no provisions for taking care of those who are victims of dementia and other fatal diseases,” she said.