by Gene Coffey, NSCLC

I had the privilege last month to speak at a conference in Louisville that was hosted by a Kentucky-based coalition called Advocates to Reform Medicaid Services (“ARMS”). The conference was devoted to identifying the best methods for ensuring choice and independence for individuals in need of long-term care, a topic that is becoming more pressing with each passing day. Just how pressing? Well, consider this: Kentucky’s two gubernatorial candidates appeared at the conference and debated each other for a solid hour strictly on the topic of the delivery of long-term care.

Now, there is no question that long-term care in general is capturing this attention largely because of the tremendous spike in the need for such care that the country anticipates during the next twenty years with the aging of the boomers. Indeed, regardless of how that care might be delivered, the subject is receiving such a heightened level of attention because of the sheer scope of the coming demand.

But this is exactly what made the effort on the part of the ARMS coalition to put this conference together and pin their gubernatorial candidates down on their positions so important. With the increased focus on the pending need for long-term care, ensuring that the delivery method of that care is a central feature of the discussion is pivotal.

But why, you might ask. Why would there be a coalition singularly focused on the issue? What “reform” does Medicaid need in the context of long-term care? And why should a broad spectrum of the public care?

Well, with regard to the question of “reforming” Medicaid, what is at issue is Medicaid’s infamous “institutional bias.” You see, the way the Medicaid program is set up, institutional care is the preferred method of delivery for an individual who, because of a chronic or disabling condition, needs frequent help in accomplishing what is referred to in the business as her activities of daily living (e.g., eating, bathing, or dressing), or instrumental activities of daily living (taking medication, preparing meals). A state that is participating in the Medicaid program (which is currently every state and D.C.) must provide nursing facility coverage to such an individual, if she also meets Medicaid’s financial eligibility requirements. However, it is exclusively at a state’s option to provide a package of institutional-equivalent services to the same individual in her home. If the state wants to exercise that option, it must request special permission from the federal government to provide such a package, and will receive the permission only if it meets a number of requirements.

Okay, so, Medicaid has its institutional bias. Why should we all care? Well, first, in passing the Americans with Disabilities Act back in 1990, Congress affirmed that maximizing an individual’s potential in the community is in fact a civil rights issue grounded in the U.S. Constitution. That should hopefully be enough to generate concern in whether people who can function in the community are unnecessarily institutionalized.

But if that is not enough to capture your interest, consider the likelihood of your own need for Medicaid’s assistance should you need long-term care. Medicaid is the single largest purchaser of long-term care services in the nation. Medicare does not have a long-term care benefit (it will only cover 100 days of nursing facility care, and only where that care is provided immediately after a three-day hospital stay and a doctor has provided approval. And Medicare advocates will tell you that a 100 day prescription is a rarity). Therefore, people typically pay out of their own pockets for long-term care, but they then see their saving quickly depleted—in some states a one-year stay in a nursing facility will cost more than $100,000. Private long-term care insurance? Well, because of the expensive nature of the covered services, you can probably guess that the premiums don’t exactly amount to chump change, and many individuals find the policies cost prohibitive.

Because of sheer cost of long-term care and the absence of meaningful coverage alternatives, Medicaid substantially stretches its financial eligibility rules strictly for people in need of long-term care. What all of this means is that if you need long-term care, there is a very good chance that Medicaid will ultimately cover at least part of the cost. But again, the preferred method of that delivery is institutional care, and that is exactly what so many consumers and advocates have been trying to change for years. And now that long-term care is such a hot topic, they are rightfully capitalizing on the opportunity to demand fundamental changes in delivery as the conversation focuses on how increased demand will be met.

Just how important is this goal of ensuring alternatives to institutional care? You know, I have friends in the advocacy community who, when referring to individuals they know who transitioned back to the community from nursing homes, call them nursing home “survivors.” When I have heard them use this phrase, the tone frequently seems to imply that “survival” is more about the restored freedom the individuals achieves in getting back into the community, and not necessarily about what might have occurred in the facilities.

But it appears more and more that “survival” is about the nature of the stay. The New York Times reported earlier this year that the federal government’s lax enforcement of nursing home quality-of-care standards has allowed the worst violators in the country to repeatedly harm their residents. If that was not enough, the Times released a subsequent report in September revealing that private equity firms are rapidly buying up nursing home chains and cutting staff and services to make a profit. Because of the convoluted schemes of ownership wrought by the private equity firms, neither federal regulators nor private injury attorneys know whom to target when residents are harmed. The article quoted one firm’s representative as saying that the aging of the Boomers makes nursing home ownership “the surest bet.” There you have it. Charge the money, scrimp on services and staff, and shield yourself from responsibility. A fortune awaits.

Thus, ensuring community-based alternatives becomes critical–it not only preserves freedom that is guaranteed by the U.S. Constitution itself, it also protects vulnerable individuals from serious harm.

The good news is that the expansion of community-based alternatives is at hand. Congress earmarked close to $2 billion a year ago for a program called “Money Follows the Person,” in which the federal government financially rewards states that move Medicaid-eligible individuals from nursing homes back into the community. The federal government has also committed funds to states for nursing home “diversion” programs that are designed to educate individuals at risk of institutionalization about the full spectrum of their community-based options. Some states, meanwhile, are developing their own programs. One state recently passed a law requiring that anyone admitted to a nursing home be counseled immediately after admission on their community-based alternatives, while another state last year made community-based long-term care services mandatory for all Medicaid-eligible individuals in need of long-term care.

But there is still much work to be done. Again, consumers and their advocates have been fighting for the maximizing of community-based alternatives for years, and none of them expect that the new programs built on top of the old ones will fundamentally change things overnight; they understand that, while the issue is finally getting crucial attention among some lawmakers, even more awareness is necessary. Sure, two gubernatorial candidates have debated their long-term care positions, but how often has the matter been discussed in the numerous presidential debates that have already taken place for next year’s election?

I am not sure that the subject has surfaced at all. But its time is certainly coming, and when even our presidential candidates are forced into a serious discussion about how we will meet the demand for long-term care in the coming years, we ought to hope and expect that meeting the demand is not in and of itself the end game, but rather that meeting the demand in a way that preserves freedom and safety is. For those of us who just might need long-term care one day, we can thank the consumers and advocates currently working so hard to make sure that this will in fact be the direction that debate takes.