The Shape of Care: Season 2, Episode 2

Darlen – I don’t want to have to be dependent on a situation where I can’t control anything. And that’s what’s happening to Joe. He has no control over anything. 

Mindy – Hi again!  Mindy Fried here. Welcome to The Shape of Care, a podcast about caregiving. In our last episode, we met Darlen, who lives at home in Seattle – and her home care worker, Shazia. We’ll hear more from them in this episode, and we’ll be talking about the lack of support and funding for elder care in the US. And some serious efforts to address those problems. But first here’s Darlen.

Darlen: Oh, I’m desperate to stay in my own home. Just desperate. As long as I have the help I need. I want to be in my own home. Terrified to go to a nursing home, frankly, because I haven’t heard hardly any good stories coming out of any of them. 

Mindy – Darlen’s husband, Joe, has been staying in a rehab facility 20 miles away for over a year now. She’s homebound… living with her 23-year-old daughter and her two Shih Tzu puppies, Danny and Patches.

Darlen – We’re praying that he can be transferred to something closer to home where Shazi can take me to see him occasionally anyway.  

Mindy – But there’s a downside to that. 

Darlen – They will take his social security away from me and then I won’t have money to pay my rent.  

Mindy – Here’s what’s going on. With Joe in rehab, Darlen says she can use his social security income — $1300 a month — to pay her rent. But if Joe moves into a nursing home, she says Medicaid will take Joe’s social security money to pay for his care. Shazia is trying to help Darlen get into the Section 8 subsidized housing program. It provides rental vouchers to low-income people. But there’s a long waiting list. 

Shazia – We try so many channels, But we are still on the list for almost two years now and (Darlen) a Section eight, (Shazia) Section eight. 

Darlen –  And they’re telling me at least another year before I can be on it. Once I get Section eight, then they can have my husband’s Social Security and I’ll be OK. I can take care of our rent. 

Mindy – You really need to have a degree in systems to be able to navigate all of this, you know what I mean? 

Darlen – [00:29:29] This is what I’m saying. 

Mindy – It’s complicated. And a lot of people, including Darlen, have not been made aware of what help is available to them. Washington state is launching a new policy. It will eventually address the financial conundrum that people like Darlen and Joe are facing. It’s called WA Cares, and when it’s implemented in July 2023, it will be the country’s first publicly funded long term care insurance program. 

I spoke with Dr. Ben Veghte. … the policy expert who led the design of this program.

Ben – For the vast majority of Americans, the system is broken. Their long-term care is unaffordable at the time that they need care. People can’t afford to pay for it out of pocket on a fixed income in retirement. 

Mindy – Ben is now the director of WA Cares.

Ben – WA Cares is a public long term care insurance program that makes Long-Term Care affordable for everyone in our state for the first time in the history of our state and for the first time in the history of our country. 

Mindy – People with resources can purchase private long-term care insurance. But it’s really expensive. And people with pre-existing conditions – like dementia or Alzheimer’s Disease – may have trouble finding a policy that covers them.

Ben – The Private Long-Term Care Insurance Market works well for about 5 to 7 percent of Americans. For the rest of us there simply is no financing system available that works well for people. Medicaid is there for people who are very destitute, but it is only there for you after you’ve gone through a journey of becoming impoverished, which is where the need for long term care drives middle-class families into poverty. And that’s not a journey that people want to go on. 

Mindy – Once it’s up and running, WA Cares will cover the costs of professional home care services, equipment, home safety evaluations, and even compensation for family members who provide care. Unlike Medicaid, which targets low-income people who need long-term care, WA Cares is for everyone.

Ben – This program makes Long-Term Care Insurance affordable for the broader middle class, and it’s a really exciting innovation.

Mindy – In April 2021, Washington state governor, Jay Inslee, signed the WA Cares Act, which created this new initiative. Researchers and policy analysts like Ben Veghte scope out the policy options. Actuaries projected the costs. And ultimately it took a host of stakeholders who advocated for the passage of the bill. That included Shazia’s union, SEIU775. 

What helped unite everyone was knowing the stakes were high. As baby boomers age, there will be more and more people needing long-term care. Some people call it a silver tsunami. 

Ben – The thing is if we don’t do something. If states don’t do something…What’s going to happen is it’s going to become unmanageable. You know, if you have fire insurance and your house burns down, the fire insurance may not address everything. It may not be perfect, but it sure makes it a heck of a lot easier to deal with the expense right? 

Mindy – In developing WA Cares, Ben looked to social insurance programs in Europe. The go-to model was Germany’s. It taxes workers through their paychecks – just like social security. 

In Germany, long-term care insurance can be used for professional home care or to pay family or friend caregivers. It can also be used for a skilled nursing care facility. The program is popular there. Ultimately, Washington State decided to follow this model.  

Ben – It gives me a lot of confidence that we’re going to be successful here. 

Mindy – I asked Ben how much workers will be taxed in order to fund long-term care insurance in Washington state. 

Ben – It’s about a half a percent of your wages. If I make $50,000, you owe about $300 a year or $24 a month.  

Mindy – Twenty-four dollars a month. So that’s 12 regular coffees a month at Dunkin Donuts.

Beginning in July of 2023, employers will withhold a small premium from their employees’ paychecks. And in July 2026, people who paid in will be able to start receiving benefits – up to $36,500 over their lifetime. 

Ben says a few other states may implement public long term care insurance – like Minnesota and Oregon. 

Ben – Those states have are all looking at ways to better prepare for the age wave. 

Mindy – I asked Ben about Darlen’s predicament. How she says if her husband, Joe, moves out of his rehab facility and into a nursing home, she’ll be destitute. She’d lose his social security income and wouldn’t be able to pay her rent. If WA Cares were in place today, would she be better off? 

Ben – If you paid in, then you’re vested. It’s kind of like Medicare. You’re eligible for the benefit. No questions asked about your living situation, how much you’ve earned, how much you’ve saved.

Mindy – If you paid in. There’s the hitch. Ben says WA Cares won’t provide benefits to people like Darlen who are already retired. If she were young enough to work another 10 years, yes – she could contribute to the program, and be qualified for WA Cares. Unfortunately, it came too late to help Darlen. 

But folks who missed that boat can still turn to Medicaid, if they’re income-eligible.  And Medicaid can also be a backstop in the future if people exhaust their WA Cares benefits.

But what about Darlen’s situation NOW? Well, Ben told me about another Medicaid policy…. one that Darlen apparently didn’t know about. 

For a legally married couple, like Joe and Darlen, Medicaid has rules to prevent what’s called spousal impoverishment. For instance, if one person is on Medicaid and requires institutional care, like Joe, and the other is living in the community, like Darlen, Medicaid would allow the spouse living at home to hold onto some of the couple’s assets – so they don’t become poverty-stricken. 

I told Shazia about this Medicaid provision, and her case workers are looking into it. 

Mindy – Four and a half years ago, when Darlen hired Shazia as a caregiver, her main health issues were related to Parkinson’s Disease. But she’s struggling with other serious health problems.

Darlen – So I have only 30 percent of my liver, only 30 percent of my kidneys. I’ve got congestive heart failure, Parkinson’s, macular degeneration of both eyes, so I’m going blind. 

Mindy – But it’s more than the physical challenges. 

Darlen –  My mental capabilities were much better defined. I was much more able to take care of myself financially and making financial decisions and whatnot. 

Mindy – Now, Darlen says she often has poor judgement, and she’s vulnerable to phone scams. She gets random calls from people trying to sell her things.

Darlen – She has to watch me because I get hooked up with these things that happen on my phone. And I go and I see something that I think that would work, I would like to buy that. 

Mindy – Darlen would give away her debit card information to the stranger calling her.

Darlen – But then they scam me. 

Mindy – So Shazia finally intervened. She contacted the bank to cancel Darlen’s debit card. 

Mindy – Shazia has become an advocate in her own life too, as an activist in her union. It started during her 3-month internship with SEIU775. 

Shazia – Then I started thinking, Oh my God, there’s so much we are doing and there’s so much need to be done.  

Mindy – She went to meet with caregivers from other states. And she learned that home care workers were earning poverty wages and had no health insurance or access to training. She was especially concerned that they had no voice to represent them. 

Shazia – And that’s how I become active leader in my union. I just work like crazy. Talking to caregivers all the time and just letting them know we need to be more and more stronger, talking to our legislators. All these things. Because of my union, we have so much achieved and… Mostly caregivers, they are women of color. And that’s a big issue. And we just want them to have respect and all the equality. 

Mindy – Shazia is now an executive board member for SEIU 775.

Shazia – And that’s an honor for me, and I am elected the third time now. 

Mindy – When I asked Darlen what she thought of Shazia’s union activities, she surprised me with a story. There’s another caregiver named Julia who comes to her home once a week. She takes care of Darlen’s daughter, who also has health issues. 

Darlen – I asked Julia to do something in the bathroom. And Julia said, why can’t Shazia do it?  And I told her number one, Shazia is doing things for me that you don’t see. 

And the biggest reason I want you to do the bathroom and I’m not going to ask Shazi to do it –  Is that Shazia right now is at a union meeting where she is one of the top dogs and she is one of the ones, she’s one of the ones advocating for you to get a better paycheck. So don’t tell me that she needs to do the bathroom for you. 

Mindy – In Washington state, nearly 80% of all home care workers work for the state. So every year, SEIU 775 sits down and negotiates a new contract with the state on behalf of home care workers. Since the pandemic started, Shazia’s union has held virtual town meetings for its members. 

Sterling Harders – Welcome! Here’s the latest update, guys. Three thousand one hundred and sixty three caregivers (3,163) on the line with us right now…

Mindy – This is SEIU 775 President, Sterling Harders, at their first town meeting in 2021. 

Sterling – On Sunday, we wrapped up the leg (legislative) session for the year and it was a crazy leg session. But spoiler alert here. Caregivers won big. 

Mindy – Sterling mapped out a series of challenges, including over a billion dollar proposed cut to the state’s Department of Social and Health Services budget. 

Sterling – In the middle of the pandemic, when nursing home workers were working in some of the most dangerous conditions that there were and home care workers were taking care of folks and keeping them out of hospitals, DSHS was proposing to cut ten thousand seniors and people with disabilities off of services. That meant that 10,000 caregivers would lose their job. 

Mindy – So the union mobilized its membership – and held events where dozens of caregivers testified remotely to their legislators. They worked closely with friendly legislators. And they succeeded in stopping this horrific cut. 

Less than a year later…  

Sterling – We have a lot to celebrate. I am thrilled to report that we have funding on all of our big priorities!  

Mindy – Because of the union’s advocacy work, wages for home care workers are close to $20 an hour. And home care workers with more training will earn over $21 an hour.  

Shazia’s proud to be a member of SEIU. 

Shazia – We can do that and we can win that and we can have all this for ourselves, for our clients and our families. 

Mindy – The union has made important strides at the state level. But what about the national political scene?  

I called U.S. Senator Bob Casey of Pennsylvania. He’s been in the forefront of pushing for increased funds for home and community-based care, as well as for nursing home reform, mostly through expansion of Medicaid. 

Senator Bob Casey – Right now, you’ve got a waiting list of over 820,000 Americans waiting for home and community-based services. They are waiting not weeks and months, but often years and years for those services. 

Mindy – He’s also pressing to increase funding to lift the wages of direct care workers.

Casey – This is a workforce of nearly 2 million Americans, mostly women and mostly women of color. Making $12 an hour, which is really an insult to the whole country if you really think about it. 

Mindy – There have also been a number of efforts from the Biden administration to address these issues. But so far, they’ve been blocked by Senator Casey’s Republican colleagues, and two of his Democratic colleagues. 

Still, the senator says he’s optimistic that the demand for home care will ultimately influence their thinking.  

Casey – A lot of them will embrace it because they’re going to have to because they’re going to have seniors and people with disabilities pounding on their door because that’s how that’s how popular these services are. 

Mindy – Because that’s how popular these services are. 

Mindy – In our next episode, we’ll turn our focus to nursing home care. And we’ll meet 94-year-old Rose Santilli and Paula Fox, the certified nursing assistant who takes care of her.

Paula – [00:23:37] We didn’t know whether she was going to live or die. And so I grabbed her and jumped in with joy and I said I got to put some life into this woman. 

Mindy – Do you have a caregiving story to share? A question about navigating the care system? We’d love to hear from you. Our phone number is: 6-1-7 – 9-7-1 – 8-6-2-2. That’s 6-1-7 – 9-7-1 – 8-6-2-2 or e-mail us: at contact@shape-of-care-podcast-dot-org. That’s contact@shape-of-care-podcast-dot-org. 

You can discover more about our show, connect with us on Facebook, Twitter and Instagram @the-shape-of-care. And to find out more about the people we’ve interviewed, check out our website, where you’ll also see lots of caregiving resources. It’s www.theshapeofcare.org. That’s www.theshapeofcare.org.  

This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support The Shape of Care financially at www.theshapeofcare.org/donate. You can either make a one-time donation, or you can become a monthly patron of the show. 

The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. our mix engineer is James Donahue. Special thanks to podcast advisor, Lisa Mullins and editorial consultant Jennifer Goren. Thanks to Franky Gonzalez Navarro for assisting with sound and music. Thanks also to Leo Martinez for work on our website, and to Isabel Hibbert for technical support. Our theme music is “Break Out” written by Josh Rosen, which he performs on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m your host and the creator of this podcast, Mindy Fried.  See you soon!