Interviews: Mr. Long Term Care
Few people understand the ins and outs of the LTC Industry and advocate intensely for reform more than Martin K. Bayne, also known as "Mr. Long-Term Care." a graduate of the Massachusetts Institute of Technology, and a former LTC insurance agent, Mr. Bayne had already started taking the industry to task when, in 1995 at age 45, he was diagnosed with Parkinson's disease. Firsthand knowledge of the problems faced by LTC consumers only added fuel to his fire and drove him to build his website, www.mrltc.com, into one of the Internet's most comprehensive sources of ltc information. In this new millennium, Mr. Bayne, based in Clifton Park, New York, has begun work on new projects, all featuring his fierce, intelligent advocacy.Long-Term care Interface found out what is ahead for this dynamic man, and how far we have yet to go.
A CONVERSATION WITH MARTIN K. BAYNE
Long-Term Care Interface Magazine
February 2001, Volume 2, Number 2
Few people understand the ins and outs of the LTC Industry and advocate intensely for reform more than Martin K. Bayne, also known as "Mr. Long-Term Care." a graduate of the Massachusetts Institute of Technology, and a former LTC insurance agent, Mr. Bayne had already started taking the industry to task when, in 1995 at age 45, he was diagnosed with Parkinson's disease. Firsthand knowledge of the problems faced by LTC consumers only added fuel to his fire and drove him to build his website, www.mrltc.com, into one of the Internet's most comprehensive sources of ltc information. In this new millennium, Mr. Bayne, based in Clifton Park, New York, has begun work on new projects, all featuring his fierce, intelligent advocacy. Long-Term care Interface found out what is ahead for this dynamic man, and how far we have yet to go.
LTC Interface:
Why did you decide to pursue LTC advocacy, and how?
Martin K. Bayne:
Our country's LTC system is on the verge of collapse? That's the reason I left the industry: to focus as much energy as I have on publishing and writing about the problem. When I first started the National LTC Policy Institute to address some of the policy issues, we had a mantra, "ECF," which stood for Education, Choice, and Financing. Those are the three areas that we believed needed the greatest attention. Education specifically needed to be a coordinated state and federal program that would systematically help Americans become aware of what benefits were available to them and what benefits were not available to them under skilled, custodial, and intermediate LTC, should they need it.
I also felt very strongly that LTC needed a national spokesperson in the same way that Charlton Heston is a national icon whose presence goes a long way toward giving the National Rifle Association credibility. We don't have a recognized spokesperson for LTC.Not only is education very important, but I also believe in choice. If you or someone you love were to have a stroke, it is very difficult to assess the options available to you both in a community setting and in the institutional setting.
Of course, financing plays a major role. Congress has a strong disincentive to look at those areas, because at the moment, of the approximately 13 million people in this country who cannot perform certain activities of daily living (ADLs), about 87% of them are in the community; only 13% of those Americans are institutionalized in an SNF, ALF, adult congregate community, continuous care retirement community, and so forth. The rest of those Americans live at home. The cost of that care, most of which is borne by those individuals and their families, is about $200 billion a year. Now, if Congress is going to open this Pandora's box, legislators will suddenly be confronted by people who want to know why they're not getting their piece of the $200 billion pie, and that will be very messy.
LTC Interface:
What will it take to raise awareness?
Bayne:
A total collapse of the system, which is imminent. In fact, five of the 10 largest SNF chains are in the courts, seeking protection from their creditors under bankruptcy laws.Other problems dwarf the financial problems, though. I bought an LTC policy when I was 41 years old, about four years before my diagnosis of Parkinson's disease. People think that they're well protected because they have LTC insurance, and in most cases they are. However, this country will witness a totally new phenomenon: We will experience a severe labor crisis because of the extraordinary anomaly of demographics that is about to occur (i.e., baby boomers becoming senior citizens).
I don't care how much money or what kind of insurance policy you have, you will not be able to find home care aides. One of the first things we must address is universal accessibility. We will have to be able to live as independently as possible because of this imminent labor crisis, the solution to which is greater efficiency and greater use of technology. The problem of LTC ultimately goes to the root of whom we are as human beings in this culture. People must understand that the issue of LTC is merely a smokescreen; there are tremendously legitimate LTC issues, but I realized long ago that the real issue is aging, our fear of aging, and our desperation to prolong the youthfulness that we find so attractive.
Until we own our wrinkles, until we own the changes in our lives that accompany the changing of the seasons, we'll continue to struggle with problems like LTC. It's really an issue of aging, so I am drawing away from one manifestation of the problem, LTC, and I'm starting to address the broader issue of aging in this country and why we feel we need to spend $8 billion a year on antioxidants so that we can remain youthful forever. Frankly, I'm proud of the way I am aging. I enjoy watching my body change the same way a tree every year changes, and I'm glad to be part of that whole cycle of nature. We've made the experience of both birth and death a pathological one in this country. We have to perform it in hospitals. Let us remember that people can also die at home
LTC Interface:
You've discontinued daily updates of your website, MrLTC.com, as of December 31, 2000. What are your future plans?
Bayne:
I've been approached by a couple of organizations that have expressed an interest in working together.
LTC Interface:
I understand that you were also pursuing another avenue of advocacy, a joint project with the LTC insurance industry.
Bayne:
Not anymore. I wanted very much to do it, but the insurance industry just didn't lend its support. That's why I ultimately left MrLTC and closed the site down, because after six years of receiving absolutely no support from the industry, I realized that the very industry that had benefited the most from all of my work was the least willing to acknowledge and support me in return. That was a tough moment for me. I just received a call this morning from an insurance agent who told me how much the site had meant to him all these years and was wondering when I'll be back. I said, "I don't know if I'll ever be back in the same way I was before, because your industry just won't support me.
LTC Interface:
How many staff people helped you maintain the LTC website?
Bayne:
You're talking to the man.
I did the site, I did the audio, I edited the audio, I turned it into a wav.file, into a RealAudio file, uploaded it to the website, hooked it up with the graphics, and everything else!
LTC Interface:
When you were younger, did you ever think your life's work would take this direction?
Bayne:
When I was in my 20s, I was in a monastery. Did I then think I'd be doing something that was service-oriented or advocacy-oriented? Sure. I didn't know that it would turn out to be in this specific area, but I've always been motivated by things like this, and yet I've also been motivated as an entrepreneur.
LTC Interface:
How did your experience in the monastery and your training shape your views of living, aging, and dying?
Bayne:
Well, the monastery was the most important time in my life that I've ever spent. All of my views on the way I live and my attitude toward dying have been shaped by that experience. I am very grateful for those years.They were hard years, though. It was a Zen Buddhist monastery, which was run very much like a boot camp. I was up at 4 AM every day, and sleep-deprived most of the time. If you can endure it, you emerge with a sense of who you are and an accounting of your strengths and weaknesses that is fairly accurate. For me, that was important.
I went in a kid and I came out a man. I went in fearing death and I came out unafraid. For most people, when you've stopped fearing death, you can begin living. My training had a lot to do with my views. It certainly makes living with a condition like Parkinson's easier. I don't know what I would have done without this kind of training.
LTC Interface:
How does the Buddhist approach to viewing these issues differ from the traditional Judeo-Christian approach?
Bayne:
That's a very difficult question to answer. I'm familiar with both; I grew up a Catholic. You must understand that there are as many different viewpoints in Buddhism as there are in Christianity. There really isn't any one Buddhist doctrine, and you must remember that there is no concept of deity in Buddhism.
Let me give you an example. My little sister is dying of cancer. She's 49 years old and the closest person to me in my life. Going through this experience with her is the greatest challenge that I've ever had, because I love her so much. Yet, we talk openly about her death and her end?of?life care. In Christianity, a great deal of emphasis would be made on praying for the patient, for a cure. People would form prayer groups, asking God to make this person better.On the other hand, whereas Buddhists are not averse to taking steps to get better or hoping that the tumor goes away, they in large part accept the hand that has been dealt and get on with their lives. So it is that my sister and I now talk openly about what we want to do the last months of her life and what I can do for her.
From my point of view, it's much saner that way for me. I can't explain it, except that there's just a greater acceptance in Buddhism of things for which we have no control. We can't hold up the planets forever on our shoulders.It may be unfair to make these kinds of global, sweeping generalizations, but Buddhists talk much more freely about death; they embrace it. Since they embrace it, they're generally not afraid of it, and they generally don't have the struggle that most others do with it. It's the same way that I feel about my Parkinson's disease; I embrace it. It's not something that I particularly enjoy, but in a way it's been a gift to me, because it's taught me a great deal about who I am, and what my limitations are. In fact, it's opened some doors for me and made me a stronger person in many ways.
LTC Interface:
How can people move away from their fear and toward a more accepting view of both end-of-life issues and of LTC?
Bayne:
I don't believe they're afraid of it; people just don't want to talk about it. It's not a particularly compelling subject at a cocktail party, and most people figure that "we'll cross that bridge when we come to it." There is some logic to that approach, because we can't worry about everything at once. However, they don't understand the nature of the beast.We cannot blame the American public for this.
Further, if the insurance industry ever has the temerity to blame the American public, shame on them! I have begged the insurance industry to arrange a media campaign with a national spokesperson (perhaps Ed Asner or Nancy Reagan) to talk about LTC. That's how you get the message out. The insurance industry won't take the high road, because they keep shooting themselves in the foot and blaming it on the American public. The American public doesn't know!
A few days ago, my 46-year old friend Mark died of multiple sclerosis. He passed away in a nursing home. I had interviewed him about six weeks earlier and asked him, "What would you have done differently?" He said, "I would have bought LTC insurance." I said to him later, after the interview, "Mark, wait a minute. I don't know where your answer came from, because you didn't even know about LTC insurance." He said, "Yeah, I guess you're right, I didn't."
Most people don't buy LTC insurance at age 40; it's not their fault! Regardless of whether their employer has offered it to them, people in their 40s worry about sending their kids to college and paying their mortgage, among other financial concerns. Who would expect them to start thinking about paying for nursing home care?
There are two things that we should do: (1) Create piggyback contracts, in which we would put a nice whole-life policy rider on it, or we would provide some type of single premium deferred annuity with withdrawal privileges and an ADL trigger attached to it; and (2) start a state and federally coordinated educational program with a national spokesperson.
LTC Interface:
If you had the chance to design a utopia, an ideal world where everything could be perfect, how would aging happen in that society, and how would LTC be administered there?
Bayne:
First of all, there is no such thing as a utopia. The concept of a democracy has become untenable in this culture, because in a democracy, in my opinion, both those who govern and those who are governed need to be reasonable people. We don't have that anymore. I'm afraid there is no simple answer to your question. The problem with everything having to do with LTC can be summed in one word: hairdryers.
That's the problem with everything, and that's why our system will never get better
LTC Interface :
Please explain.
Bayne:
When you watch George Bush or Al Gore talk to their constituents, they want more of everything-they want more hairdryers. They want hairdryers that blow more hot air. They want to make sure that there's enough energy to keep those hairdryers going for longer periods of time. In short, Americans aren't willing to sacrifice. That's the bottom line in creating the kind of system that would be wonderful, that would give good, solid, humane care at an affordable price. Americans would have to sacrifice, and they would also have to be reasonable. They do neither.
That's the sad part. I'm afraid to tell you that the LTC problem will get much worse before it gets better, because not only are people unreasonable and unwilling to sacrifice, but we have hit a wall, one of power and money. That's a tough wall to get beyond.
When President Johnson decided to build the Great Society, no one had any idea that Medicaid and Medicare would become what they have evolved into today. As I mentioned, five of the largest nursing home chains in the country are in Chapter 11, because of this reimbursement system. In Florida, nursing homes can't even buy liability insurance.
To add one final piece of salt to the wound, we have lost respect for and disenfranchised our elders. We put so much emphasis on consumerism and capitalism in this society-you're either a producer or a consumer-and the elderly are neither anymore, and there's nowhere for them to belong. There are wonderful people who live to be 90 years old and still work every day. We give them medals and the key to the city and drive them around in cars. The next day, if they break their hip, that's the last you'll hear of them, because we're now embarrassed that we don't know what to do with them. So first, let's get them out of harm's way, and second, improve conditions to the point where they can live with some sense of dignity and their last fleeting moments of consciousness can be relatively pain-free. The most we can hope for is that we will die in our beds near our families. For everyone else, all we can do is volunteer our time, and speak up when necessary, sometimes gently, sometimes forcefully; and every once in a while go down to a nursing home and visit someone. That's it.
LTC Interface:
Do you have any advice for those on the frontlines of the LTC industry?
Bayne:
Everyone has an opportunity in their own backyard to improve the quality of life for other human beings. You don't have to be a policy wonk or an administrator. You don't have to have officially a career in LTC. Those of us who work in LTC, who don't have the opportunity to be with other human beings who are themselves either caregivers or needing care, should take the opportunity to spend time with those people. In whatever way we can, we can be helpful From May until October of 2000 I couldn't get out of bed because of my Parkinson's disease. For five months, I sat in bed frozen much of the time, unable to move and dependent totally on other people, often strangers, for my food and to help me to the bathroom. It's then you realize how grateful you are for small acts of kindness. It all begins with small things; not big bills in Congress or big Medicare policy decisions, but small acts of kindness and tolerance.
