Findings: How Potential Beneficiaries May Navigate the Washington Cares Fund

“There's a lot of planning that will happen around access assistance and navigation assistance.” – Bea Rector, director of Home and Community Services Division Aging and Long-Term Support Administration Washington State Department of Social and Health Services (DSHS)

Understanding how potential beneficiaries will access the Washington Cares Fund and navigate the long-term services and support systems as a whole is critical to our research. In the survey, the team purposely did not share much information about the Fund to determine how many Washingtonians were familiar with the new benefit. The survey showed that nearly 63 percent were not aware of the Fund, while 31 percent said they were familiar with the Trust Act, while the rest said “maybe.”

Survey participants were also asked the following question: If Washington State provided $36,500 in long-term care benefits, what type of professional services and support do you anticipate you will need?

Here’s what the team learned from survey respondents:

• 75 percent said they would need professional support at home
• 53 percent said they would need training, pay, and support for family members who can provide services and support
• 51 percent would need adaptive equipment and technology (i.e. wheelchair ramps, medication-reminder devices, etc.)
• 46 percent said they would need professional services and support at a facility
• 46 percent would need rides to the doctor
• 36 percent they would need home-delivered meals
• 26 percent said they would need home-safety evaluations

Based on these responses, it seems people want to stay in their homes as long as they can. “Generally, people like to keep doing as much as they can for themselves,” said Dan Murphy, executive director of the Northwest Regional Council, Area Agency on Aging. “They want to stay home if they can, they want to control how the money is used on their behalf, and they want to age with dignity.”

For many Washingtonians, their first experience with the fund simply will be a new tax deduction in their paycheck. Who will they go to first with questions about this new deduction? Most likely, it will be their employer.

As we noted earlier in this report, more than three quarters of our survey respondents said that they had a 401k and/or a pension through their employer; and another 62 percent said they have an employed base healthcare plan. What’s more, about 20 percent of our survey respondents shared that they lean on their employer for information when planning for retirement. Together, this highlights howemployers play a key role in providing important information to the state’s working population.

“I'm a CPA. It took me several readings… to understand the difference between a Health Savings Account and Flexible Spending Account, and specifically, like, what is covered under which one,” said a male interviewee, 47, who deals with employer benefits programs at his company in Federal Way. “Even now, I'm more familiar with it, but I still have to go to our HR sometimes and ask."

Those employed by tribal employers may face a different path towards accessing the Washington Cares Fund than those working for employers that are regulated by Washington State and required to participate in the Fund.

For companies employing low wage workers, they may decide that any deduction from their employees’ earnings would be too much. For tribes that already offer care-related benefits to their members, they may look to see how the benefits covered by the Fund are different.

A representative from a federally recognized tribe in Washington State emphasized how important freedom and flexibility is for tribal employers as well as for workers. “When looking at the [fund], [companies are] going to see what the benefits are and see how it affects their employees overall,” she said. “It really depends on how it's packaged, and how much flexibility there is in it.”

Low-wage workers are among the targeted beneficiaries for the fund. They are the individuals who will have the least resources to pay for future long-term care. Those with any savings will be the ones who have to make the difficult choice on whether or not they want to spend down their assets to qualify for Medicaid.

Many Washingtonians rely on community-based organizations for help in navigating government programs and for support in maintaining the government benefits that they use. Our survey showed that 15.4 percent of respondents relied on community-based organizations (CBOs) for healthcare services, and another 32.8 percent would turn to their neighborhood organization or church in an emergency.

The CBOs serve as the first point of contact for the most vulnerable communities in urban and rural areas. Churches and CBOs are the single thread that ties people with caregivers and services by offering the necessary information based on their care needs. The CBOs also have the reach and connection within communities of color and the growing immigrant population; they’re aware of the cultural nuances and traditions, when it comes to expectations about services and supports.

“Washington State, being multi-ethnic, you have to think how you're going to come across those ethnic groups, and really introduce them to this option that exists,” said Julia Weinmaster, state director for All Ways Caring Homecare in western Washington. One challenge that she noted was reaching communities that distrust government institutions.

A representative from a CBO serving older adults in the Asian, Asian-American, and Pacific Islander community echoed this point. He also stressed that CBOs focused on supporting specific communities can support the development of diverse outreach programming. “One of the (challenges) is how information is disseminated,” he said, adding that his department alone supports clients who speak up to 10 different languages and dialects. “It's great that it's out there, but people don't know it's out there. You know, so that's one piece of it. And then the other piece of it is like, okay, step one is letting them know what's available. A second step is okay; now that they know it's available, how do they access it?”

He, along with many CBOs, raised concerns about beneficiaries' digital literacy and their ability to access information about the fund via a computer or their smartphone. “We're assuming everybody knows how to navigate the Internet, has internet access, has a smartphone or a computer at home.”

Most of all, the CBOs also shared that they already provide support for Medicaid recipients. Therefore, closely working with the CBOs and other such service providers would offer potential beneficiaries a smooth transition from the fund to Medicaid.

Bea Rector shared that sentiment: “We really want to make sure that we leverage the best of what Medicaid has to offer as well as the Older Americans Act and the many state-funded programs that have been developed over the decades, leverage those so that they're available in the trust.”

The size and composition of the “gig economy” varies, including the size of the workforce, hours worked, and basic demographics (such as race, gender, and immigration status). Nationwide, gig workers also have often been misclassified within payrolls, excluding them from protections and benefits afforded full-time employees. Black and Latinx adults are significantly impacted by this misclassification, considering they represent a significant share of those working in the gig economy—and most work for online platforms.

In a 2018 Edison Research poll, almost a third of Latinx adults aged 18 and over (31 percent) earned income through the gig economy, while 27 percent of Black adults and 21 percent of White adults earn income through gig work. For Black and Latinx adults, the poll also showed that gig work served as a primary income source.

Additionally, a Pew Research Center report showed that some 14 percent of Black adults and 11 percent of Latinx adults had earned money in the last year from online gig work platforms, while five percent of whites have done so.

Among our interviewees, three were self-employed, and all stated they were interested in participating in the fund. One interviewee asked: “What does [the fund] do for the entrepreneur who, you know, isn't paying into this system? Is there an option for entrepreneurs and self-employed people to benefit from this type of program?”

Beyond wanting to opt-in, these interviewees said that being automatically registered in the program would relieve them of new administrative burdens. They stated that they already had so many other moving parts to keep track of in their lives.

Many raised concerns about the instability of their work. A male interviewee, 54, based in Spokane, shared that he’s only recently been in a stable job in technology—in the course of a 30-year career, he has lived in three countries and held 10 jobs. A female interviewee, 36, who has worked as an independent for the last five years in Seattle, recognizes that payroll taxes (i.e. social security, medicare, and unemployment) are not being taken out of her check. With that, she has to find other avenues to build her nest egg—but that will come after she and her husband pay off their credit card debts.

Washington State has set a precedent in leading the nation with progressive policies. That includes voters approving a 2016 ballot measure to raise Washington’s minimum wage and establish a paid sick leave program.

The state also has an extensive history of delivering an array of long-term services and supports, spending nearly three-quarters (73 percent) of its long-term services and supports budget on home health and personal care. That compares with 59 percent on a national average.

“Strong federal and state partnerships to leverage federal funding from the Center for Medicare and Medicaid Services and the Administration on Community Living providing Older American Act funds and many of the grants used to test models of care over the years have been key to the development of the LTSS [long-term services and supports] system,” according to Washington State Plan on Aging.

As noted earlier, the state’s long-term services and supports system currently ranks second in overall performance within the nation, based on the fourth edition of the Long-term Services and Supports State Scorecard. The high ranking reflects Washington’s keen focus on delivering quality and affordable care to older adults, people with disabilities, and family caregivers. That begins with a solid, well-trained workforce.

For instance, home care aides are required to take 75 hours of basic training within the first 120 days of their start date; and they must earn their certification as a home care aide within their first 200 days of their start date. Aides also are required to take continuing education courses and training. The base pay is above minimum wage at nearly $17 an hour, including benefits.

Maintaining a qualified workforce, as well as building upon that workforce, will be key as the number of those needing long-term care doubles, advocates and state officials said. It will also secure Washington as a leader in the nation.

Aurora Castillo Garcia, 28, discovered her passion for becoming a full-time certified home care aide while caring for her mother-in-law. She is among individual providers interviewed who have participated in the training programs provided through SEIU 775. She, along with others, expressed the value of such training to be better equipped to care for a loved one. “It gives me gratification to help others,” she said. “Before, I felt like I didn’t have a skill, but now I have passion about what I do. This is where I belong.”

Among the potential beneficiaries interviewed, many had relied on informal caregiving (unpaid caregiving) and expressed that they also saw the value of training. They want to learn skills to better care for their loved ones and, generally, families want to know that their loved ones are being cared for appropriately.

“I’d be open to training,” said a female interviewee, 42, who lives in a rural community in eastern Washington State. Within her community, informal caregiving is a tradition—neighbors and families step in to help one another when necessary. “I’ve seen family members become certified nursing assistants to work in local nursing homes or assisted living facilities on a part-time basis, but then utilize that training to take care (of family) without being paid.”

Some interviewees said upon their need for long-term care that they would prefer a trained caregiver—be it a family member or not. “The training component would help to alleviate caregivers' fears of not being capable of aspects of care that they might not have thought about,” said a male interviewee, 53, from Des Moines.

Another interviewee who once worked as a caregiver to those with disabilities echoed that view: “More training is needed. Most people don't know how to handle what life throws at them.”

It became clear very quickly that navigating long-term care is complicated, service providers often make billing errors, insurance plans often refuse to pay for services that seem like they're covered in the plan, and so on and so forth. All beneficiaries need a strong advocate on their side—be it to how to access the benefit, manage their funds, gain training or even learn about long-term care. All will need an advocate.

From our interviews, we heard many stories about family members providing unpaid caregiving, often spending many hours per week. Their tasks ranged from negotiating bills to interviewing staff at assisted living residences. One interviewee calculated that she provides her mother at least 102 hours of care a month, including preparing meals, giving her showers, and handling household chores. A Seattle-based interviewee said she spent 10 hours a week helping her grandmother, who lived across the country with the search for a senior living community.

“I knew my grandmother couldn’t do it on her own, and she felt like she couldn’t live in her apartment on her own anymore. So what are grandchildren there for?”

She is fluent in various languages, which helped her to learn from frontline staff—the CNAs, dining staff, and housecleaning—about the communities and their services during her tours. “I also was able to communicate with these workers and ask them how they were being treated. Were they getting paid well enough? If they were not, that place was out.”

The fund benefits are intended to be flexible. However, this creates new risks for consumers who suddenly have $36,500 to spend. During our interviews with community-based organizations, union representatives, adult care advocates, and potential beneficiaries, all called for rules and oversight to protect beneficiaries from being taken advantage of by a variety of actors they might do business with.

They also spoke about the risk of long-term care providers misrepresenting their services, employers failing to properly deduct fund contributions from their employees’ accounts. A female interviewee from Seattle was worried that family members providing care might be abusive without much oversight. “It’s a beautiful idea, but I could see this getting abused,” she explained. “If it comes with training or a social worker checking in, then [it could work better].”

As mentioned above, state officials plan to leverage the best of Medicaid, as well as the Older Americans Act, within implementation of the Fund. That implementation process should include the approved services from registered providers and the licensed certifications and continued training of caregivers. Advocates agreed with that approach, stating it would mitigate the pitfalls that may arise as beneficiaries navigate the long-term services and supports system.

Beneficiaries will interact with many different service providers and each will come with benefits and risks. “I’m concerned that facilities are going to require a certain amount of (the benefit) to be used in their facility before they will accept the person on Medicaid,” said an advocate who supports assisted living and nursing home residents.

A male interviewee from Federal Way, 47, knows firsthand the need to be that voice for your loved one. He and his sister helped their parents move into a retirement community, during which they faced many struggles with the community’s leadership regarding the contract and payment for various services. He became the key advocate for his parents, ensuring that they were not taken advantage of while living in the community. Outside of talking to family friends, parents’ doctors, and their case manager, he had to hire a lawyer. That time sticks with him.

“Even as diligent as I thought I was, I still got some unexpected surprises throughout the process,” he said. “(Looking back), I probably would have involved our (extended) family into more of the details.”

Along with other interviewees, he called for the state to put in more protocols that will make continuing care retirement communities be more financially accountable to consumers in providing proper care and services. He also called for community-based organizations, the state, and unions to provide educational seminars on financial management and understanding of the various factors involved with long-term care costs. That would help mitigate the possible misuse of the benefit.