Mr. Long Term Care
Let Care be our Long Term Commitment
I can safely say that the purchase of my LTC insurance was the wisest and most forward-thinking, financial decision of my life. - Mr. LTC

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"After age 65, Americans have more than a 70% chance of needing some form of long-term care."
-American Society on Aging

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An Interview with Joseph A. Jackson, LICSW, CCM

by Mr. LTC

Fourteen Years In the Trenches:Long-Term Care From the Front lines

MB: We've got a problem in this country.  In your own words tell me about what it's been like; about the changes you've noticed in the last 14 years and where we're headed.

JJ:  In the last 14 years, I've worked primarily in home health care, but also in hospitals and nursing homes a bit.  And I'd say that the biggest change I've seen in that time is that we've managed to create a health care and long-term care system that can't provide adequate care anymore.  That's what's happened.  We've essentially made people who need care, people who are really sick and disabled, pariahs to the health care system.  The sickest people are the costliest to take care of, and everywhere I look-in hospitals, home care agencies, rehab facilities-everywhere in "health care", providers are trying to avoid these chronically ill patients.   I call what we have today "Hot Potato Health Care", and I'm currently writing a piece with that title.

The problem is managed care.  Managed care is an excellent model of health insurance and disease management for people who don't ever consume health care services.  But what we've done is take a managed care idea that works very, very well for people who never get sick, and transplant that onto the backs of people who stay sick all the time.  And it doesn't work.  And just in case you hadn't noticed, most of the consumers of expensive, inpatient health care are people who are chronically ill.  And people who are sick all the time need ongoing monitoring and regular access to caregivers, which is exactly the opposite of what managed care offers.

So, in our "hot potato health care system", we take these people who are never not sick and we tell them, "Don't come into this system until you get really sick.  We will treat you when you're really sick.  But don't you worry, as soon as we can, we will drop you like a-you guessed it-hot potato."  Then, what happens is they get really sick again-and unnecessarily I might add-and the whole expensive treatment cycle starts all over again.  And everyone loses. 

And we've been very creative in doing this, while making it look like we are still providing the very best health care in the world.  Mostly we've done it with semantics.  Semantics enable us to cut dollars.  For example, in home health care, we've stipulated that "health care" is synonymous with "medical treatment."  And anything that smacks of chronic care-the type of health care most of our patients truly need most-isn't health care at all.  So, any time some good-hearted home care nurse or aide starts to spend a little time doing something other than treating an illness in this medical-necessity-only model, we say, "Hey-cut that out.  That's not allowed!  Medicare won't pay for that, so we won't pay you!  And not only that, we're going to pay you less and less as time goes on, and make you work harder and harder with more and more patients, because we have less and less money to do this!"

Basically, we've ratcheted health care down to one measureable concept-because you can't charge for something you can't measure-and that concept is symptom elimination.  In the name of symptom elimination, we have cut out so much "care" that now the people who are best at caring-our nurses, aides and therapists-are getting out of the "business".  Those of us who are still in it, putting up with this nonsense, are just hanging on by our fingernails.  It's incredible really, when you think about it.  As a home care social worker, I haven't had a pay raise in 14 years.  In fact, I and many others like me who are working on a per-visit basis, am actually making less per visit, when you adjust for inflation, than I was when I started.  I make $50 per visit now.  In 1990, I made $53.  That's more than a 50% pay cut!  Health care is probably the only industry that touts downward mobility as a career path.

So, why do I and why do others in this field continue to do it?  Because we love the work.  Because if we don't do it, nobody's going to.  But the fact remains that a lot of health care professionals have gotten out of the system because they just can't make a living doing it anymore.  Health care is losing its mentors.  The only way I can stay in is by working privately to offset the loss of pay in the system.

So the bottom line here is that this whole thing is imploding.  America's health care system, arguably the best medical treatment system in the world, is losing its ability to care for people, because it has lost its compass.  It has forgotten the definition of "care", and it is losing its best caregivers.

MB:  So what's the cure?

JJ:  In a word-prevention.  We have to attach value to preventive services or the health care system itself will be overrun by a myriad of preventable maladies-unnecessary fractures among the elderly who weren't given the help they needed to keep from falling; avoidable exacerbations of chronic illnesses from inability to stay on a medication regimen, or to pay for the medications to begin with; family caregivers burning out and giving up for lack of a little respite.

As far as I'm concerned we've just got to bail right out of the medical treatment mindset, and develop a whole new culture of health care that is aimed at preventing the need for medical treatment to begin with.  To do that, we have to somehow get home health aides, nurse's aides, nurses and physical therapists well paid for tending to the needs of chronically ill people on an ongoing, preventive basis.  And, we need an army of them, as opposed to what we've got now.  Now, we have the opposite!  Their numbers are diminishing, because we're not paying them very well for starters, at a time when we need them more, and need more of them, every day.  That's the key to success.  If somehow or other we can make it attractive to be a home care nurse or, here's a new title for you-a "prevention nurse"-who specializes in helping chronically ill patients keep themselves from getting sucked into a hospital or nursing home, we'll start seeing that we don't need to be hospitalizing so many people at so high a personal and economic cost. 

How do we do that?  We spread the wealth.  That is what we have always done in health care, and that is what we need to do now.  I think the way we keep the most people well is if nurses and aides and social workers can get paid more on a privately paid basis from people who have the means to pay for the care (and a lot of people have means to pay for the care) so then they can spread their time into the people who don't have the means.  Somehow, we have to rediscover the not-for-profit approach to preventive, holistic health care.  I think that that's the way we do it.  Not by creating a high-priced chronic-care option for the rich, with private practitioners working independent of the health care system charging the equivalent of what many lawyers charge to basically do home health aide staffing.   I don't think that that's the way we care for the most people.

So we create an opportunity for the not-for-profit sector to charge higher fees for wealthier people for skilled nursing supervision, home health aide services, maintenance physical therapy (as opposed to physical therapy that is only helping a person get better), and so on.

MB: So it will be done on a sliding scale with means testing?

JJ:  Correct. The problem that we've got now is that health care is losing its equanimity.  Hospitals are still places in which it doesn't matter if you have ten million dollars or just ten bucks.  Hospitals are still the level playing field.  In other words Medicare is the primary paysource for most hospitals.  And if you're disabled and under age 65 and living on Social Security Disability and SSI combined, and you wind up in Bed 1, you are being treated by the same physician, with the same pay source as a mega-millionaire who is 75 years old and former CEO of brand "X" corporation, lying in Bed 2.  Whether you are a pauper or a king, you are being treated by the same physician with the same drugs, the same nurses, the same everything.  It is not so in the long-term care system, especially in the community.  We have to make the long-term care system in the community a mirror of what we otherwise still have in the inpatient health care system.  And the only way to do this is if the rich pay caregivers a little more, or in some cases a lot more, so the caregivers can afford to give their time to the poor. 

MB:  Can a free market economy and a national chronic care system coexist?

JJ:  The fact of the matter is that if an extremely wealthy person or an extremely poor person gets into a car crash, today, they are still going to go to exactly the same place.  They are going to go to the same emergency room.  Period.  End of story.  They're going to through that emergency room door and they are going to be cared for in the same way.  Not too long after their emergency room experience, they are going to be moved to a floor in the large building that's attached to the emergency room, and into a bed, be it in a private or a shared room.  And they are going to be lying in the same sheets with the same teddy and the nurse and the doctor that's walking in there and taking care of them is going to be one and the same.  That's the current health care system that we have.  It, meaning the care that people receive whether you are a billionaire or flat broke, whatever the case may be, the same pot of money is going to pay for most of the care that you receive.  That is an extraordinarily cool, and socially quite, well, socialist.  It ain't capitalist at all.

The fact of the matter is that the emergency room through to admission, essentially our trauma care system, is totally egalitarian. That's where we shine.  Now, that whole system is about to evaporate.  And its going to evaporate because we haven't figured out how to prevent trauma care, which is way too expensive to continue at the current rate.  It's about to fall apart because of the fact that huge numbers of people are winding up in hospitals and nursing homes going through those emergency rooms who don't have to.

MB:  That's right.

JJ:  We spend $1.5 trillion dollars a year on health care in this country. Seventy percent of every dollar we spend is spent caring for people who are chronically ill.  Huge percentages of the people who wind up in hospitals who are otherwise chronically ill don't need to wind up there.  If, for example, they keep themselves from falling down.  If, for example, they stay on their medications accurately and/or they are not over prescribed or under prescribed or if they have a decent benefit and can therefore stay on their meds.  If, for example, their caregivers don't burn out.  We can keep huge percentages of people who are otherwise sucking up enormous resources that are driving hospitals and the Medicare system to its knees by doing some ounce of prevention worth of ton of cure.  We're not going to be able to do the ounce-of-prevention-worth-ton-of-cure on the outside, in the community, in people's homes, unless the people with the means to pay for that care begin to do so.  Long-term, chronic, prevention-focused services, in the community are not going to be getting paid for by Medicare at all, let alone by any government system.  They're going to have to be paid for by individuals and to be provided by families.  And the people who don't have the where-with-all with which to pay for this care need to enjoy the largesse of the people who do through a not-for-profit chronic care system.  That's the solution that presents itself to me.  It's the only one that's immediate, palpable, and can be put into place tomorrow-electively.  I don't need a government authorization or HMO approval to take care of people.  I just do it. I imposed exactly the system upon myself, as do many of the people that I work with every day all day long.  I have a private care management company.  People of means have hired me and I still stay in the trenches in a home health care agency, and do pro-bono work for the people who have been discharged prematurely who don't have the means to pay for the care they need.  It's really quite simple.  Call it Robin Hood Health Care.  It's the only way we are going to save our incredibly valuable inpatient system.

Joseph A. Jackson, LICSW, CCM, is author of Health Care Without Medicare: A New Practice Manual for Community-Based Care Management.  The book is available on his website at  Jackson offers training and consulting services for home care agencies seeking to develop private pay services, is a home health care social worker for Lee Regional Visiting Nurse Association, Inc., and is President of ElderCare Advisors, Inc., a care planning and care management company serving Western New England.  He has worked in disability services, home health care, rehabilitation and hospice services for twenty years.  Mr. Jackson is a Licensed Independent Clinical Social Worker, A Certified Case Manager, and a member of the National Association of Social Workers and National Association of Professional Geriatric Care Managers.