Do you want to know the future?

That is the big question being considered in this long read about the direct-to-consumer genetics firm 23andme and one mother’s struggle to make sense of (and peace with) a $99 genetic profile she got of her 5 year old adopted daughter. I was interviewed for this story because of my work on the use of genetic markers as potential risk adjustor/underwriting variables for private long term care insurance and the fact that the author’s daughter was found to have the e4/e4 variant of APOE-4 which confers increased risk of Alzheimer’s disease.

The author of the story (it is published under a pseudonym) and I talked for a long time, and her anxiety about her daughter getting Alzheimer’s disease was palpable, a result to which she had locked onto. My advice to her was this:

But I appreciate the advice from Duke’s Don Taylor most. “It’s possible the best thing you can do is burn that damn report and never think of it again,” he said. “I’m just talking now as a parent. Do not wreck yourself about your 5-year-old getting Alzheimer’s. Worry more about the fact that when she’s a teenager she might be driving around in cars with drunk boys.”

It is not that AD is not a terrible disease, and goodness knows our nation’s long term care system is messed up, but you can only worry about so many things at once. There must be good uses of such genetic profiles, but it seems easier to get it wrong than right. And coming up with a coherent long term system is not important because a given person is at increased risk of AD, but because we know for certain that many of use now alive will contract the disease, it is just not clear who.

cross posted at freeforall.

FTD (not the florist)

About 18 months ago I shared the news that my family was moving to another house so that my mother in law could move in with us.

This move took place about 16 months ago, my mother-in-law’s house sold about a year ago and she moved into our new house last Summer. Her physical and cognitive decline since that time has been pronounced, and she was hospitalized 3 times in 40 days from Thanksgiving to Christmas; the last hospitalization occurring when she wandered from our house during the night for the third time that last 10 days she was with us. She fell in a ditch by a road near where we live, was found by a runner just before dawn, and was “Jane Doe” for around 4 hours in the ER before we realized that she was gone.

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What’s next for disability and long-term care?

I had the chance to interview the Urban Institute’s Howard Gleckman, one of the nation’s leading experts on disability policy and long-term care. The small piece below gives a flavor of things.

Pollack: So what’s next? Now that CLASS has failed. Is there anything that’s going to come in its place?

Gleckman:  The fiscal cliff law does create a new commission which is tasked to come up with a solution to the financing problem, and also to address delivery and workforce issues….

We haven’t really done a good review of long-term care policies since the Pepper commission in 1990. It’s absolutely time that we do it again.

But this commission will be hamstrung by a very short time frame. Its members must be appointed within 30 days. The commission has to make its recommendations within six months after that. I honestly don’t think it’s possible to perform a serious review and deliver a set of serious proposals in six months.

It’s also concerning that this commission is not connected to any federal agency. Normally, you would think that something like this would have some connection with the Department of Health and Human Services, but it’s not. It’s floating around out there with no bureaucratic home.

There is also no requirement that Congress actually vote on any of these recommendations. The Commission is required to submit its recommendations in six months but Congress could ignore them. I don’t know where that leaves us.

Pollack: If anything, I think you’re wildly overoptimistic. It just seems like it’s going to head straight to the write‑only memory, as we used to say in engineering school.

Gleckman:  I think that’s right. There are two reasons why Congress creates commissions. The first is that there is an intractable problem they want to get all the parties to sit down and work out. That was the case a few years ago, when there was a broad consensus that we needed to close military bases. The normal regular order of Congress wasn’t going to do it. So Congress turned it over to a commission. Everybody had agreed in advance what they wanted to do. Then there is the more common commission, which essentially is a way to make it look like you’re doing something when you’re really not. I fear that is what this one is.

See the full interview here.

Long Term Care problems won’t just go away

Busy week and little time to blog, but a quick note on this Kaiser story reporting on a SCAN Foundation poll on long term care needs/perceptions/preparations in California, sent my way by Brad Flansbaum. The article nicely summarizes the surprise many families receive when it comes time for a loved one to need LTC:

Long-term care costs can surprise many families who expect Medicare to cover their needs. After a hospital stay, Medicare will pay for 100 days of nursing home care, but after that, families are on their own or are forced to spend down their assets to become poor enough to qualify for Medicaid.

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Private LTC Insurance is Not the Answer for Most People

(cross posted at freeforall)

The WSJ has a good point/counter-point on the question “should you purchase private Long Term Care Insurance?” (h/t Brad Flansbaum). Mark Meiners argues for purchase by saying “you shouldn’t hope for the best” while Prescott Cole says “LTC insurance is too expensive, you should invest what you would spend on premiums.”

Essentially, they are both arguing that you should prepare for LTC, one via purchasing insurance, the other by building flexible assets that could be use for LTC, or bequeathed to your favorite charity upon your death if die without needing it.

The Journal piece outlines an important conversation that misses the main public policy point: private LTC insurance will never be the solution for the LTC needs of the general population due to income and wealth levels.

Perhaps 10 percent of the population has enough income to pay premiums, and/or enough in assets they may wish to partially protect from a potentially catastrophic LTC cost. For example, past work I have done showed that around 4 in 10 elderly persons had income and assets at age 65 low enough to qualify for Medicaid before paying for any LTC. Those people are removed from the complicated decision framed in the WSJ piece, but they are certainly at risk of needing LTC.

If ever there were a risk profile that cried out for social insurance, it is LTC. The reason that seems so laughable, is our countries failure to grasp the most important thing in all public policy debates: the counterfactual, or the costs and benefits of what happens by default, in this case for LTC.

NPR on Informal Long Term Care

(cross posted at freeforall)

NPR has an interesting story asking “who needs LTC insurance?” because other arrangements can be made to provide for such care (h/t Brad Flansbaum).

This puts a personal face and story on a public policy problem that hits close to home, as my mother-in-law is moving in with my family this Summer. The last 8-9 months my family has been consumed with myriad details to work this out (estate planning, new wills, buying a house, trying to sell two others, getting siblings on the same page, etc). I wrote last week on some of the public policy aspects of LTC; I mostly want to point folks to the NPR story, as it is the best, short representation of the many issues related to thinking through inter-generational living that I have heard.

The Cost of Caregiving and the Demise of CLASS

AARP estimates that around 25 Million persons are providing unpaid caregiving to a loved one with a disability, and that those who do so while juggling market work lose around $325,000 in lifetime income after accounting for foregone wages, income from Social Security, and private pensions. The worst part of the demise of the CLASS provisions in the Affordable Care Act has been the fact that the majority of the focus was on the impact of CLASS on the 10 year deficit score assigned to the bill be the CBO (it accounted for around half of the ACA’s deficit reduction), diverting attention from one of the most profound public policy questions facing our nation:

CLASS wasn’t an accounting gimmick, but an attempt to set up a self sustaining, voluntary LTC insurance program that would provide modest benefits (not enough for a nursing home; best thought of as aiding aging in place) to persons with disabilities. If CLASS had worked perfectly and been a self sustaining program, it would have decreased the deficit in the short term, while increasing the deficit in the out years. As I wrote in December, 2009 about CLASS:

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The essence of planning for long term care

(cross posted at freeforall)

Dan Diamond (@ddiamond) alerted me to a Senate Special Committee on Aging hearing (The Future of Long Term Care: Saving Money by Serving Seniors), that will be webcast live today at 2pm via the committee homepage. I hope they manage to talk about practical solutions to the difficulties of providing long term care, and do not simply spend their time clucking about what they oppose.

I was guest lecturing on Long Term Care and the demise of the CLASS provisions of the ACA in Peter Ubel’s health policy class on Monday and someone asked, “what is the essence of planning for LTC?” My answer was that it entails planning for who will wipe your ass when and if you can no longer do it for yourself.

Now, that it not what the 20 year old’s in the class were dreaming about discussing when they came to Duke, and I get that. It is very easy to put off thinking about LTC until tomorrow.

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