To understand Noonan's complaint -- and its profound misguidedness -- a bit of background is necessary. The Affordable Care Act includes a new Medicaid program called Community First Choice. The program gives Medicaid, for the first time, a formal way to pay for at-home care for the disabled.
This is a huge deal, says Bob Kafka of the disability-rights group ADAPT. "Way back when they created Medicaid they had an entitlement for nursing homes," he explains, but nothing for at-home care. "This gave Medicaid what we call an 'institutional bias'" -- meaning the program tended to push the disabled into institutional living arrangements rather than helping them stay in their homes.
But in recent years it's come clear that at-home care is often better for the patient and cheaper for Medicaid. States began asking the federal government for waivers allowing them to use Medicaid dollars for certain kinds of at-home care. Dozens of states now have these waivers. But this was an ad-hoc, state-by-state process that led to a weird patchwork of care arrangements. One state might have a waiver for at-home care in adults with dementia but not adults with brain injuries from car accidents. Another state could have the reverse.
The Affordable Care Act creates the Community First Choice program, which gave Medicaid a formal, clear way to pay for at-home care. The new payments would be based on "functional need" -- that is to say, they're available to anyone who's disabled, no matter the cause. Participating states get their normal Medicaid matching rate plus six percentage points. So if the federal government typically shoulders 55 percent of the state's costs, they'll shoulder 61 percent of the state's costs under the CFC program.
But any program like this raises complicated questions. After all, at-home care is preferable for some disabled persons, but nursing homes are better for others. What happens, for instance, when the patient is too cognitively disabled to weigh in on her care preferences?
Which brings us back to Noonan. When she writes, "This is the reason many people don’t like ObamaCare," the "this" links to a report in the Oregonian looking at a particularly difficult edge case: People who are too cognitively disabled to direct their own care, and whose guardian is also their paid caregiver.
In these cases, Medicaid insists that the disabled individual have a representative who is not their caregiver during the construction of their individual care plan. The idea is to get rid of the conflict-of-interest that could emerge when the person being paid to care for a disabled individual is also the person in charge of creating the care plan. "It’s really a positive thing to have those things separated," says Kass. "Even though people may provide care out of altruism we don’t want to have situations where there’ll be abuse."
There was early confusion about whether the regulations effectively meant a guardian couldn't serve as a caregiver. That's reflected in the Oregonian article which appears to be Noonan's source (an e-mail request asking if she had any other sources went unanswered). But both the Centers on Medicare and Medicaid Services and Oregon's Department of Human Services confirm that they agree guardians can -- and, indeed, are encouraged -- to serve as caregivers under the new law.
"Parents and family are the first and primary caregivers," says Patrice Botsford, director of the developmental disabilities program at Oregon's DHS. "No matter how dedicated we in this field are we’ll never be able to match the caring and nurturing of a family member."
To prevent conflicts of interest, in cases where the guardian is also the caregiver, another personal representative -- a family member, or a neighbor, or a doctor -- needs to be designated. And there are procedures around that designation process that have yet to be worked out. But CMS says they have no issue with the guardian being involved in the construction of the care plan, the naming of the personal representative, or ending up as the caregiver. They just want a voice in the process that doesn't have a direct financial interest in the outcome. (And, as Aaron Carroll writes, imagine the outcry if there were no controls on the program and it led to abuse!)
This stuff is complicated and there appears to have been some legitimate confusion about it in Oregon. But even so, this question arises in the context of Obamacare's massive expansion in at-home care options for disabled Medicaid recipients. An expansion Noonan, in her rush to weigh in against Obamacare on behalf of a small number of families in Oregon, completely ignores.
Towards the end of the piece, Noonan offers four reasons that this shows why so many people hate the law. Given the example she chose, it is particularly revealing. Number one:
No mother or child should be put in this position by a government ostensibly trying to improve their lives.
Absent the law, of course, many more mothers with disabled children will live in states where Medicaid doesn't cover at-home care for their family. Questions about the edge cases in the CFC program are important. But it's perverse to ignore the huge expansion in at-home care services that's leading to the edge cases in the first place.
Second, everyone in America knows health care is a complicated and complex subject, that a national bill will have 10 million moving parts, and that when a government far away—that would be Washington, D.C.—decides to take greater control of the nation’s health care it will likely get many, maybe a majority, of the moving parts wrong. A bill that is passed and is meant to do A will become Law U—a law of unforeseen, unplanned and unexpected consequences. And that’s giving Washington the benefit of the doubt, and assuming they really meant to honestly produce Law A.
This is the kind of language that sounds great in theory but is nonsensical in practice. Yes, unintended consequences are a constant presence in lawmaking, as in all other parts of life. But Medicare is a law to finance health insurance for the elderly and it does exactly that. Social Security is a forced savings/redistribution scheme that sends out regular pension checks to retirees and it does exactly that. Medicaid is a law meant to finance health care coverage for the poor and the disabled and, though eligibility varies among different states, it does exactly that.
Laws meant to do A typically do A -- not perfectly, and sometimes not even well, but in those cases, Congress is supposed to modify them until they actually do A and do it effectively. Noonan's argument here isn't against Obamacare but against any complicated undertaking ever. But even so, in this case, there's no other option. Someone needs to pay for the care of Medicaid's disabled population. The only question is how.
Third, because health-care legislation is so complex, it is almost impossible for people to understand it, to get their arms around what may be a given bill’s inadequacies and structural flaws. Stories of those inadequacies and flaws dribble out day by day, in stories like this one. They produce a large negative blur, and a feeling of public anxiety: What will we find out tomorrow?
This is really the crux of it, isn't it? Stories of inadequacies and glitches do dribble out day by day, as they should. Those stories make sure inadequacies and glitches get fixed. But both in reporting those stories in the first place and, as Noonan did here, reacting to them subsequently, there's a choice on offer between whipping up public anxiety or figuring out what's actually happening, what -- if anything -- needs to be changed, and what's standing between here and there.
In this case, a few phone calls showed there was confusion over a possible problem that didn't actually exist, all of which was in the context of a program that is making advocates for at-home care for the disabled very, very happy. Noonan scared her readership over a part of the law that should've thrilled them, and her. That this is happening again and again, as part of an ongoing and concerted ideological campaign, is part of the reason people hate Obamacare. But it's not a good reason.
Fourth, when a thousand things have to be changed about a law to make it workable, some politician is going to stand up and say: “This was a noble effort in the right direction but let’s do the right thing and simplify everything, with a transparent and understandable plan: single payer.” Will that be Mrs. Clinton’s theme in 2016?
That would make it seem like people who don't support single payer -- a group I assume includes Noonan, and all elected Republicans -- should be very interested in making Obamacare workable. Yet the opposite seems to be the case.