Only Anecdotal

I once spoke to the owner of a home care agency who told me of his experiences with people new to the long-term area of health care. He told me that time after time, individuals insisted that their particular Medicare plan would pay for home care and personal care services in the home. He encountered others, whose private insurance was the best offered by their company, who held the same conviction and unshakeable faith in their coverage.

Then, soon after, he listened to the yelling, the anger, the incredulous voice at the other end of the phone, faced suddenly with the fact that our regular old insurance does not work so well when our needs switch from acute to chronic. It is a bitter pill to swallow, and a generic, over-the-counter, non-reimbursable one at that.

My colleague’s solution was to let calls go to voice mail: let another agency break that news, and lose the business (shoot the messenger). Often, after hearing the same news from enough sources, people simply realize that they have to pay up if they want long-term help at home… if they can.

If they cannot, they may enter into a new segment of the population: the Medicaid-eligible.

We all have been watching states grapple with their Medicaid plans in recent times, and have heard the normal complaints about the program. Part of the issue, I am sure, is the perception of Medicaid and its relationship with “welfare”, entitlements, free care. It is the insurance of the poor. It is also the insurance of one in four children, of many people with disabilities, and of 70% of nursing home residents. It is the only insurance that pays for any sort of long-term care at home, too, those these options are still too limited and often too restrictive–and Medicaid too hard to navigate–in my humble opinion.

But it is more than this: I wonder how it is that Medicaid is the only insurer to pay for any sort of long-term care. How did we fail to require this of our private insurers, or indeed, of Medicare?

As I was watching last week, as the Dual-Eligible (Medicare-Medicaid) demonstration project rolls out in Massachusetts, I realized that there is an enormous gap in understanding within traditional private insurance about how long-term care works, or even what it really means.

The issue, I believe, is that “long-term care” implies just that: it is care that goes on for a long time–or forever. And in this, it becomes the ordinary, an actual part of a person’s life, and not simply a single medical event, or even a number of them. Where a medical professional may well be able to impart some expertise on medical treatments for specific acute conditions, it is far more difficult for the same doctor to be the expert on a person’s day-to-day needs that come about as the result of a disability or illness–much less, to be the expert on a person’s wishes and preferences.

It matters, because prescribing ineffective doses of the wrong medicine in a person’s life will do harm,  within a system whose intention first is to do no harm.

Ineffective doses could mean too few personal care hours. Wrong medicine could mean an ill-fitting wheelchair, or meals on wheels instead of assistance with grocery shopping. On paper, figuring out “appropriate” services seems easy: in reality, it will be the biggest challenge of the demonstration to determine how those dollars are spent. How much flexibility will this system allow? How long will it take for a new system to understand that the wrong equipment may lead to more hospitalizations? or that the agency-based personal care attendant’s refusal to show up at specific hours or to do specific tasks really will affect the long-term health of the individual needing those services?

For the lucky few who will never have to rely on Medicaid, extensive and often lavish options remain. Perhaps the limitations to private insurance and Medicare will still surprise, but the freedom of choice remains for those who can pay for it.

A medical model has always relied on a separation between healthy and sick, between abled and disabled, between normal and abnormal. And a medical model relies on maintaining these notions, on care that keeps the chronically ill, disabled, “abnormal”–and dare I say, poor–population isolated, for a long time–or forever. If private insurance and Medicare treat only the curable, then our payors isolate, as well, by refusing the reality of day-to-day needs inherent to medical conditions that will not be cured. In this isolation, a person becomes defined by a medical condition.

A person is not a medical condition. To isolate in this way is to deny the very humanity of that individual. Is this a responsibility that we as a society are willing to assume?