LYNNWOOD — Mae Hochstetler has two jobs: a patient health navigator and a paid parent home care provider for her son Joshua, 25. She frequently tears up when she talks about the home care worker shortage and the impact on seniors and people with disabilities or complex medical needs.
“We need more caregivers, and we need them now,” Hochstetler said.
Joshua has autism and epileptic seizures, attention deficit hyperactivity disorder, anxiety, depression and oppositional defiance disorder, some of which worsened in the isolation of the pandemic. At 6-foot-4 and about 300 pounds, he can hurt himself and others if he falls during a seizure. His service cat, Dolly Parton, can alert others to a pending seizure. His twin, Joy, is a respite provider, and his other sister Hope is working on the training to be one. And a neighbor across the hall is a licensed home care provider who helps out. Hochstetler’s family and friends help her with the logistics, while her two paid jobs help her afford their apartment, even as rent has increased by $300 in the past two years.
Things weren’t always this stable for the family. State law would have prevented her from being the paid home care provider when Joshua was a minor.
Hochstetler has raised four grown children, mostly on her own, since they were in elementary school. Today, she is managing OK, able to pay the bills and rent — largely because the state now pays her to care for her son.
In Snohomish County, about 4,000 people are eligible to receive home care services through Medicaid.
State lawmakers are considering legislation and a budget that could help ease the way for others like Hochstetler, by increasing pay and expanding who can be a family caregiver.
The average wait time for a home care provider is now about two months for someone who qualifies for Medicaid, and even longer in rural areas or for people with complex medical needs, according to Bea Rector, assistant secretary of Washington’s Aging and Long-Term Support Administration.
Home care aides or providers work in private homes, adult family homes and assisted living facilities. They are licensed and paid by the state for Medicaid patients, either through a “consumer-directed model,” often caring for a family member, or through a home care agency that matches providers to patients.
These providers are disproportionately women, people of color and immigrants, Rector told The Daily Herald.
“And so we’re really talking about a historic kind of discrimination against this workforce of not really recognizing the value, and undervaluing the caring profession,” she said.
‘No safety net’
House Bill 1694 would expand who can be considered a family caregiver, meaning people like grandparents and cousins would have simpler training requirements. For Hochstetler, it’s important that the state will study the feasibility of paying parents of minors to be caregivers.
Holding down a steady job, Hochstetler said, is a real challenge for parents of children with disabilities. She tried to work a variety of customer service and sales jobs, but constantly lost them to care for Joshua’s urgent needs.
“Every time I’d have to run because he had a seizure, or he had a meltdown, or something happened at school and the teacher didn’t want to deal with him, I’d have to leave work to come get him. There was no safety net for me,” Hochstetler said.
If she had been a paid parent provider when he was a kid, she said, “life would have been so much better. I could have worked a part-time job and been more at home.”
Hochstetler also wants to see spouses eligible to be paid caregivers. The bill directs DSHS to design a pilot project.
In her patient navigator job, she sees married couples who have to be separated — because one person has a medical need for caregiving services — due to a lack of home care providers. If the healthier spouse could be the paid home care provider, they might be able to make it work and stay together at home.
Rector testified as “other” on House Bill 1694, the only person or organization to not sign in to support it. She told The Herald the Department of Social and Health Services took that position because a few of the items are not in the governor’s budget, such as setting up a better data system to understand the workforce. But otherwise, the agency supports the bill’s policies.
‘These are really difficult jobs’
In Gov. Jay Inslee’s proposed state budget, home care providers could see pandemic hazard pay raises made permanent and access to improved benefits, like dependent health insurance. At $350 million, it’s enough to bring the minimum wage up to $21 per hour and improve benefits, according to Hochstetler’s union, SEIU 775.
Her job as a parent provider was a pleasant surprise and opportunity for her in 2019, bringing stable income and health insurance for herself.
The legislature approved hazard pay for home care providers during the COVID public health emergency. That increased pay has meant “everything” to Hochstetler. At the beginning of the pandemic, everyone in their household lost their jobs within a week of each other: Joshua, Mae and her daughter Joy.
Unemployment wasn’t going to be enough to make ends meet, she said. Without the hazard pay, “I don’t know what we would’ve done. It made all the difference in the world,” Mae said.
They were able to keep the apartment, put food on the table and pay the utility bills. She then used the union education benefits to earn a slight pay bump, and study — for free — for a certificate to be a patient health navigator. She has been doing care coordination work for seniors and people with disabilities since May 2022.
As it is, the pay for jobs like a home care aide or “personal care aide” is low and has declined relative to Washington’s minimum wage.
A personal care aide in long-term care made $16.88 in May 2021. A home care aide like Mae, just starting out then, would have made $16.98 plus the $2.28 in hazard pay. She also receives a $0.75 shift differential for extra Advanced Health Care Specialist training she completed.
In King and Snohomish counties, the 29,000 “home health & personal care aide” workers across all industries made just $16.07 in 2021, less than cashiers and food preparation workers. Statewide, more than 54,000 people work as aides in long-term care settings.
This makes recruitment difficult, Rector said.
“For the folks that are not family members, we’re recruiting from the same recruitment pool as other caregiving fields, but also fast food, retail, Amazon,” she said. “And these are really difficult jobs, if you compare this to working at McDonald’s or Burger King. People do it because they want to help and they want to make a difference in the lives of people,” Rector said. “But they also need to be able to feed themselves and their family and put a roof over their head. And that requires increasing wages and compensation.”
‘We cannot lose more caregivers’
Through her patient health navigator work, Hochstetler has seen first-hand the need for more home care workers and what happens when patients lack support. She recently had a day at work where she called clients who had been unable to get home care.
“Six in a row told me they haven’t had a caregiver all week, and how badly they needed a caregiver, and how can I find a new caregiver?” Hochstetler said.
On another occasion, she quickly assessed that a client should get to the hospital. They had lacked caregiver time recently, while having pneumonia. Not only did their breathing seem too labored, but she noticed another physical sign of possible post-stroke complications. She persuaded the client to call 911.
“We cannot lose more caregivers,” Hochstetler said.
In a survey of her fellow union members, 11 percentsaid hazard pay kept them in their jobs. And among the newest caregivers, 10 percentsaid they would not have even started the job without hazard pay.
The county does its best to provide interim resources to folks waiting for care, such as home-delivered meals, fall detection and medication reminders, said Laura White, director of aging and disability services for Snohomish County.
But the workforce shortage and people’s inability to hire a caregiver is a “constant problem” that she hears from case managers, especially in rural areas of the county, like Sultan, Gold Bar, Startup, Granite Falls and Darrington. The changes in HB 1694 would “greatly impact“ getting more family members approved, and the improved wages and benefits in the budget would attract folks to this “important” work of home care, she said. While nursing homes are vital for folks with more acute needs, White noted that aging in place is a popular preference.
“I just think it’s the most valuable thing our society can provide. Because what it’s doing first of all, it saves tons of money. It saves millions and millions of dollars for the state every year, because it keeps people out of nursing homes,” White said. “And I feel like it’s so rewarding, to be able to help somebody be where they want to be.”
Hochstetler spent a day in Olympia last month, talking to legislators about House Bill 1694 and the budget.
“The need is one that the caucus has been wanting to address for a while. We know that we just don’t have enough home and health care workers,” said Rep. Lillian Ortiz-Self, D-Mukilteo, chair of the House Democratic Caucus and a sponsor of House Bill 1694.
But other health care industries, and other public sector agencies, are also requesting funds to ease the worker shortage.
“We can’t fully fund anything to the extent that would be best practice, so we have to continue to act a little at a time,” Ortiz-Self said.