Advocates for long-term care residents warn that many are feeling the weight of overlapping pandemics – both of which disproportionately impact seniors.

Cathy MacCaul is the AARP Washington State Advocacy Director. AARP Washington State has been vocal this week in support of HB 1218 – a bill sponsored by Rep. Jessica Bateman (D – Olympia) that would impose a range of new requirements on long-term care facilities.

Long-term care facilities would need to develop comprehensive disaster preparedness plans, provide communications devices to residents and return phone calls from the family members of residents in a timely manner.

HB 1218 was supposed to move out of committee this week, though executive session was rescheduled for February 10th. Health Care and Wellness Chair Eileen Cody said the bill wasn’t quite ready.

Ahead of executive session next week, I spoke with MacCaul to hear about the “double pandemic” that swung legislators into action. She discussed the opposition advocates have faced from the long-term care industry, what Washington’s long-term care system does right and what it does wrong.

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Michael Goldberg: The AARP said this week that long-term care residents are experiencing a double pandemic – outbreak and social isolation. While the isolation pandemic was exacerbated by the coronavirus pandemic, it also predated it. How did the social isolation pandemic break out and how has it gotten worse over the course of the coronavirus pandemic?

Cathy MacCaul: One of the biggest challenges as you age is that your friends pass away. We have shifting demographics where family members no longer live in the same communities. Oftentimes they find that they’re not able to live at home with a care provider or live with a family member. So they’re put into a facility to receive care. 

For the most part, those facilities do a great job in terms of providing social engagement opportunities in addition to basic care. But prior to the pandemic, social isolation was already a very real thing because a lot of seniors have dementia or memory loss. They forget about the social fabric and the connections they have with family and friends. They might have hearing loss which further alienates them. And if you have other physical limitations, your ability to drive yourself around or rely on public transportation is challenging. 

But there’s always been a variety of social services that come in and fill that gap. There are senior centers across the state that shuttle seniors around. You have churches that step in. You have Meals on Wheels programs, whose delivery workers become de facto social workers helping seniors navigate different systems. You also have libraries and other institutions that provide technology access for seniors that can’t afford their own device. When covid happened, all of that was shut down. 

That whole entire safety net of social inclusion was shut down and the ability to engage with your community was closed. For seniors that were in facilities, what became the most horrific thing was the disproportionate number of seniors that came down with covid because they were in congregate settings. The closure of all of those ancillary social service organizations, compounded with seniors basically being locked in these facilities, created the worst possible storm. 

And then the long-term care facilities lost staff. Some staff members died and others stopped working because they were not willing to put their lives at risk while earning minimum wage. The facilities then had to cut all congregate activities, like classes and so forth. So all of these seniors ended up locked in their rooms. That is the background for where we are.”   

MG: Voicing your support for HB 1218, you said, “Simple solutions like having access to a telephone should not be a debatable issue.” Access to a telephone seems like a very basic service. Why are long-term care facilities in the position where only now, amid a pandemic, these basic services are being written into law?

CM: A lot of it has to do with transparency. During the pandemic, AARP worked closely with DSHS on transparency so that consumers would know which long-term care facilities were seeing covid deaths. DSHS was a little reluctant at first. I’m sure they were concerned about legal liability for their facilities. I said, ‘it’s not about legal liability, it’s about gross negligence.’ This was about facilities that weren’t being transparent. DSHS came around and did well. They posted a list of all long-term facilities with the covid cases and deaths. 

We also advocated for removing legal immunity for long-term care facilities. It was not about targeting facilities that had covid cases. It was about those facilities that were demonstrating gross negligence for the care of residents. There is going to have to be the opportunity for families to seek redress in court. There needs to be further corrections done by the nursing industry, both at the federal and state level.” 

MG: What specific corrections would you like to see?

CM: We advocated very vigorously for visitation and virtual visitation. Families need to be able to talk to their loved ones in these facilities. That’s how this issue around accessing the phone came up. 

Some of these facilities were saying that they didn’t have the staff to help, they didn’t have the technology or an internet connection. We started talking with the Washington State Long-Term Care Ombudsman’s Office and they were telling us about facilities that didn’t even have phones. Or they had one cordless phone for the whole facility. If that cordless phone got lost or the battery died, they had no phone. 

Some facilities immediately went out and bought devices with their own money. Family members brought in devices as well, but they were concerned because a lot of those devices would disappear or break.

We also advocated for the prioritization of covid testing in long-term care facilities. We worked on policies around the segregation of individuals with covid at these facilities by creating covid-only wings. 

The AARP along with the Ombudsman’s Office, the Washington State Alliance for Retired Americans and other organizations called for a few temporary fixes that can be done now. During the whole process, we were looking at ways to find improvements but it just felt like at every single turn, the industry was not willing to step up with a solution of their own. So we decided to take legislative steps to create some incremental changes that we think will have long-lasting effects. 

The challenge is that we want to get these changes done now. The industry is pushing hard to kick the can down the road. They want us to wait until after the legislative session; to sit down and have a task force examine this issue. What we need done needs to be done now. Having access to a phone should be a resident’s right. When a family member of a resident calls, somebody should return their call. We are talking about human lives. The industry told me that they don’t know any other business that regulates when a call is returned. I said, ‘I’m sorry, these are human lives. These are people that are paying you $9,000 or more a month, and others are on Medicaid. Their family members deserve to have their call returned.’ 

When I worked at Microsoft, you were expected to return someone’s call within 24 hours. That seemed pretty reasonable. But I was dealing with boxes of software. I wasn’t dealing with people’s lives. 

We find a solution in terms of what is acceptable, but we need to work together on this. We are in the process of negotiating measures related to HB 1218, but it seems shocking and confusing to me that we would have to negotiate on this. The industry never once said that we never told them about these issues. They knew the issues because we talked with them about it for several months. It wasn’t until they saw something in bill language that they were forced to come to the table. 

I want to say that I really respect Rep. Jessica Bateman. She is doing a phenomenal job trying to convene a group to work through these issues. I think it’s because she has a background in public health. I appreciate that the industry is now coming to the table. During the first conversations we had, it felt like there was no flexibility or room to negotiate. I think Rep. Bateman and Chair Cody made it clear that they wanted us to be at the table all working together.” 

MG: How does Washington State’s long-term care system compare to other states and what steps can policy makers take to keep improving it?

CM: By 2030, one fifth of the population is going to be 65 and older. AARP is having conversations about how to build a long-term care system that is going to work for this mass influx of baby boomers as they age. People are living longer, they’re healthier, but we don’t have a system in place to handle that number of long-term care clients. 

To create our long-term care scorecard, AARP looks at all the long-term care systems across the county. Every year, Washington State is ranked either number one or number two. We’re always fighting with Minnesota for first. The reason we’re a leader is that on average, more than 60 percent of our long-term care takes place in home and community-based settings. 

This could be provided by a care provider that comes into the home or a family member. There are about 800,000 individuals in the state that provide care to a family member. Washington State has been a leader when it comes to these home and community-based settings, and it’s not about institutional care. So there have been serious discussions about nursing home reform, and that is what AARP is looking forward to after the session. 

The other thing Washington State has done is that we passed the Long-Term Care Trust Act. That is a first-in-the-nation policy which is a payroll premium that kicks in in 2022. Everyone will be paying a 0.58% payroll tax, but they will also have $36,500 benefit, which will adjust with inflation, with the first benefits starting in 2025. That will give people who have not saved for retirement or don’t have long-term care insurance the ability to actually pay for in-home care or use the money at a facility. 

We’re continually trying to figure out the best way to incentivize home and community-based settings. We’re working on a bill right now related to accessory dwelling units (ADUs). ADUs will give older adults on a fixed income the ability to either construct a house that is single-story that they can live in as they age or rent out to augment a fixed income as they deal with long-term care. 

We know that 70 percent of people want to stay at home as they age. So how do we actually do that as a state?”

This interview has been edited for clarity and length.

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