A couple of decades back, John McDermott turned his vocational pathway from Catholic seminarian toward social work.
As state long-term care ombudsman for the last 17 years, however, he’s found it’s still a form of ministry, helping families navigate through tough relationship and financial barriers where the care of their elderly loved one is concerned.
"People call us up with a whole host of issues, family fighting," said McDermott, 57. "You know, ‘I’m the power of attorney, I don’t like my sister, so I forbade her from visiting Mom in the nursing home.’ The nursing home is now stuck in the middle — ‘What are we supposed to do?’
"I tell them: You talk to the resident. If the resident is still alert and oriented, akamai, then their wishes override any power of attorney or any guardian."
Amid the problems, there’s progress. One new law he celebrates resulted in inspection reports for nursing facilities and care homes this year being published online (health.hawaii.gov/ohca/inspection-reports/). His next goal is to compel unannounced inspections: Hawaii is the only state where inspectors must call ahead.
McDermott is single but grew up in a big family: six children born in five years. He has five sisters — including his own twin and another set of twins. He also had a mild form of muscular dystrophy as a child; he walks and otherwise coped well with the condition, but it’s given him empathy for those with disabilities.
The New York-born McDermott moved to Hawaii in 1985 and enjoyed counseling and helping adolescents and young adults in his early career. Then he decided elder care was a better use of the master’s degree in social work from the University of Hawaii (there’s also the undergraduate degree from the University of Notre Dame and the divinity degree from University of California-Berkeley).
As ombudsman, he has served as advocate for the more than 12,000 residents in the long-term care system, a continuum ranging from skilled nursing facilities to various levels of residential care homes. Unlike the mainland, only about a third of those people are in the more institutional, nursing-home settings.
He is part of only a staff of three, which is why he is putting out the call for more volunteers, who help with outreach and fact-finding visits at care facilities.
McDermott said there’s often a learning curve as new governors and their appointees find out that federal law gives ombudsmen a mandate to speak out.
"Sometimes I’m told I cannot testify on something," he said, "and then I tell them, ‘Well, you need to read the federal law.’"
QUESTION: How did you transition from your first jobs with youths to advocacy for elders?
ANSWER: I saw an ad in the newspaper that Maunalani Nursing Home needed a social worker. And I had never really worked with the elderly, and there was nobody there really to train me. … They did hire a gentleman to come in and meet with me to help get me started.
But a lot of things I had to kind of learn on my own. And I found out that I really loved it. So as much as I enjoyed working with kids, you know, seniors say "Thank you." And seniors show appreciation. Seniors are always concerned: "I don’t want to be a burden to my family." …
So I really just loved working with them, and I felt very protective for them. … So that was the perfect background to become ombudsman.
Q: Because you’ve seen it?
A: Because I’ve seen it, I know the inside of facilities, I know the families from hell that will never be happy. I know what residents want. I know what good care looks like. …
Q: What would you say is the greatest vulnerability in long-term care now?
A: I think in Hawaii, because real estate is so limited, so expensive, we have more intergenerational families living under one roof than anywhere in America. … And that can be very difficult.
The blessing is that it means there’s usually somebody available to take care of Grandma when she’s starting to get dementia, starting to get forgetful, forgetting to turn the stove off, things like that.
So we generally don’t place people in nursing homes in this state unless they are so old and so sick and so frail that the family just can’t do it anymore. Our nursing home residents are generally very confused. There’s a lot of dementia.
So, these are the folks who could easily be victimized, because they’re not going to remember somebody’s name; they’re not going to remember, even though they might be black and blue, how did that happen to you?
Q: So they couldn’t provide evidence of abuse?
A: No, not at all. So that’s why the screening process is so critical. The facilities have to be really careful that they’re getting staff that have the right heart, the right attitude.
And nobody goes into nursing home care to get rich, because most of our long-term care residents end up on Medicaid, and the Medicaid reimbursement is not that good. …
We have only one nursing home on this island that’s strictly private pay … the others are all Medicare-Medicaid.
Q: What distinguishes Hawaii from other states in nursing care?
A: In our state, the vast majority are not in nursing homes, they’re actually in the community. That’s because we have a shortage of nursing home beds.
A company on the mainland, or even here, that wants to open up a nursing home, the biggest obstacle is land. … (In addition to the range of care homes), the community care foster family homes, those are mini nursing homes. It used to be no more than two beds; now they can have three beds. … These are people who should be in a nursing home but they’re out in the community.
If they were in a nursing home, there’s an RN all the time, there are social workers, activities directors, dieticians, lots of folks watching what’s going on.
If you are in a foster home, there’s just you and the caregiver. So the state requires that there also be a case manager that’s kind of overseeing what’s happening.
If you’re a private pay, that case manager, they’re all charging like $500 a month. And this model fails if the case manager is not doing their job.
This is one of the common complaints that we get. People say, "I’m paying $500, and I don’t know what I’m getting for it, because the case manager comes in but doesn’t talk to my mom, goes right to the caregiver, sometimes not even talking in English, so my mom doesn’t understand what’s being said. And nobody’s giving me any kind of a report, but I’ve got to pay 500 bucks … "
I think the case management issue is still something we need to work on.
Q: Was the foster home category created because of the nursing-care bed shortage?
A: Well, the foster home program started out, actually, as a Medicaid waiver program. People who were private pay, you own the world when you’re private pay and you can go wherever you want to. But if you were Medicaid and you were SNF (skilled nursing facility) or ICF (intermediate care facility), you could only go to a nursing home.
So we got a federal waiver to use Medicaid dollars, which is 50 percent federal money, to let people go out into the community, if that’s what they want, their choice.
But over time, that program started to lose its focus, and they started taking private pay people; they weren’t supposed to.
DHS (the state Department of Human Services) became aware of that and put a stop to that. And they (foster home caregivers) went to the Legislature, saying, "Well, the care homes can have private pay, why can’t we have private pay?" So a compromise was worked out that they can have one private pay and the other one has to be Medicaid. …
Q: But what was the impetus for this waiver program, to begin with?
A: I believe the original intent was just to give more choice to those residents, mostly seniors, who did not want to be in a nursing home.
Q: It’s not everyone’s style, right?
A: Yeah, that’s it. That’s the real issue. Everybody has their own preferences. So our Legislature is trying to accommodate as many different options as possible.
Q: Do you see a shift toward programs that enable "aging in place," enabling families to care for their own longer?
A: That’s one of the reasons why we have the Aging and Disability Resource Centers, which are through the county-area agencies on aging.
I get a lot of those calls. People call me up not always because they have a concern or complaint about a long-term care facility, but actually prior to that point, when they are trying to get somebody into a facility, and they don’t understand all the different options. They don’t understand the payment. They don’t understand when is it time to say, "I can’t do this by myself anymore."
We do tell folks that where you go is, first of all, based on what is your level of care? And that is determined by your own primary physician. …
But then, if you call up the Aging and Disability Resource Center, they have case managers that can kind of assess, could we provide a package of services to your home so that you stay there?
So, do you need bathing services? Do you need Meals on Wheels? Do you need chore services? Do you need transportation services for food shopping or to the doctor’s? Do you need adult day care? Do you need respite care?
All of those things, our Legislature has been very generous in funding that. So people pay what they can contribute to that, but there is no set fee. And the whole point is, keep people at home as long as possible, because that’s a win-win. That’s what they want. And that’s what we taxpayers want, because if they go to a nursing home and go on Medicaid, we are paying $10,000-$15,000 a month for these people.
So there’s definitely been a big emphasis on how do we keep people home, how do we support caregivers … not just in Hawaii, but nationally.
