The State We're in - Struggling with home care

Rachel Ford

GSNC/NHPBS

The State We’re In program

Click the link to watch the full interview on NH PBS's The State We're In.


Like the rest of the nation, New Hampshire is facing a home care crisis. Most adults want to age at home, but experts say the current approach to providing care outside an institution is unsustainable. Granite State News Collaborative Journalist Kelly Burch, Cornerstone VNA President and CEO Julie Reynolds, and Nurse and Caregiver Jamie Villers discuss the problem and what some people are doing to address it with The State We’re In host Melanie Plenda.


This content has been edited for length and clarity. Watch the full interview on NH PBS's The State We’re In.


Melanie Plenda: Kelly, you've recently written a story for the Granite State News Collaborative on the home care crisis. What sparked this idea, and why did it resonate with you?


Kelly Burch: I initially received a press release that had some information about the home care crisis that included the story on the Villers family and the Pratts, both of whom had a lot of trouble finding home care for their daughters who required assistance. When I saw that it immediately resonated with me because my father has been in a nursing home since his early fifties, which is way too young to be in a nursing home. Before he went into the nursing home, we were able to keep him at home for a few extra years because of home care. If there were more home care options more widely available, he probably would be able to be in a less restrictive living environment, which I think would be better for his overall health. When I heard this story, it was something that I had experienced firsthand, and the stories like Jamie's were just so powerful that it was definitely something I wanted to report on.


Melanie Plenda: What is causing this crisis?


Kelly Burch: There are a few factors at play. First and foremost, it's a workforce issue. Home care encompasses both skilled workers like trained RNs and lower skilled workers who don't actually have any special training. On the lower skilled worker end, people are being paid slightly better than minimum wage. The caregiver we spoke to, Missy, was making under $13 an hour for a physically and emotionally demanding job. She helps Jamie's daughter bathe, she keeps her safe, and she keeps her exercising. Missy's doing a lot of work and pouring her heart and soul into it, but she has colleagues who have left to make more money working in retail or food service. A lot of us can agree that taking care of a disabled adult is a very difficult job and arguably more so than retail or food service. If it's paying less than those jobs, it just makes sense that workers are going to choose to work in established retail or food jobs that often come with more predictable schedules and better benefits.


On the other side is the shortage of skilled healthcare workers like nurses. That's something that has been an issue in New Hampshire for at least the past 10 years. It's driven by the fact that there's not enough training and schooling available for nurses, in part because the professors make more working as practicing nurses rather than teaching. There's systemic issues on both ends of the spectrum for the workforce. 


In addition, there's reimbursement issues. A lot of times agencies are being paid less from the government than what providing care costs them, so there's this idea in our healthcare system of cost shifting, which means that an agency is meant to make up the low amount they're paid from Medicare patients by taking on more lucrative, privately insured patients. Unfortunately, a lot of the people who require home care in New Hampshire access that through Medicaid programs, so there's not necessarily the spread and variety of patients that an agency needs to make this make sense for them financially. Unfortunately, together those things mean that patients like Jamie's daughter and Sherry Pratt's daughter don't have access to the care that they're already approved for.


Melanie Plenda: Jamie, not only are you a nurse, but you're a mother and caregiver to your daughter, Alyssa, who was diagnosed with dementia at 31. Can you tell us about your experiences and walk us through your typical day?


Jamie Villers: Alyssa is 36 now. She's nonverbal, and she's unable to care for herself. She's very happy, thank goodness, but when she came to stay with me at 32 we didn't have any care for her. It was very difficult to get the funding that she needed to pay for coverage and care, and then we had to find someone who could do it. We went through about nine caregivers in eighteen months that they left for better jobs that paid more, jobs with benefits that were less physical and emotional. We finally found Missy, who's just fabulous. We get her 40 hours a week so that I can come to work to help fill the nursing shortage as well.


Melanie Plenda: Day to day, what is that like for Missy and taking care of Alyssa? What does that involve?


Jamie Villers: Missy’s there for Alyssa all day for all of her needs. She toilets her, she feeds her, she showers her, she keeps her company, she takes her out walking and singing and dancing, and she'll do laundry if needed, but she does everything that you would do if you were staying home caring for someone.


Melanie Plenda: That sounds like it's been such a struggle. Can you talk to us a little bit about that? As a mother and as a nurse, being on both sides of that, can you talk us through how this process has been?


Jamie Villers: It's honestly been one of the hardest things I've done. When I was asked to speak up about it, I didn't hesitate at all. I'm not alone in this situation. Baby boomers are coming of age and it's just going to continue to get worse. When you want the best for someone and you want to care for them in your home and make sure that they're safe, but you have a responsibility to go to work and provide a roof over your head, your heart keeps going back to the home where your child is and it tears you up.


Melanie Plenda: Julie, let's talk a little bit more about funding for home care. It's not just a matter of giving caregivers a raise. Funding for home care comes from three main sources, it sounds like: federal Medicare, state run Medicaid, or commercial insurers. What are the challenges here?


Julie Reynolds: Each of them come with different challenges and different payment sources depend on the care that you need. In Jamie's case that is covered most likely by Medicaid and choices for home and community based care services, which is state funded. Unlike other businesses, we don't decide what we get paid; the government decides what we're going to get paid. For CFI, the cost of a nurse is about $190 a visit when the state will reimburse us about $100 a visit, so there's a significant shortage in payment; that's the same with other services like nurse’s aid and homemakers and personal care service providers. 


There are many agencies that just do CFI services and they really are struggling right now in caring for those patients. Not only is the funding not there, but the staff isn’t there. There's a lot of competition and wage wars going on right now because there's a shortage of labor force. If you have a nurse's aid that's making $13 to $14 an hour when they can go to Walmart or Hobby Lobby and get $15 to $18 an hour, they're going to make that change when nursing services are critical right now. 


Melanie Plenda: Can you tell us more about that struggle and what has to be done there?


Julie Reynolds: For nurses, there's a shortage of professors, because the nursing students who come out of school are getting paid more than the professors. Colleges have limited enrollment for nursing programs, but colleges, from what I understand, do not make money in nursing programs. There is certainly a long list of people who want to become nurses, but the faculty and the funding isn't there to produce them. The same goes for nurse’s aid programs; there's limited nurse’s aid programs, and we need to do a better job at encouraging people to become nurse’s aids. There is a significant shortage in nurses and LNAs. It's been escalated because of the pandemic, but it has been around for over 10 years. We knew that there was going to be a nursing shortage with our aging population, with New Hampshire being the second oldest state in the country.


These articles are being shared by partners in The Granite State News Collaborative. For more information visit collaborativenh.org.