It’s now just nine months until the key elements of Obamacare go live. With the countdown to the debut of Health Insurance Marketplaces (the “Exchanges”) and sweeping new insurance industry regulations now on everyone’s mind, I’m amazed at how much our conversation centers on the partisan political technicalities surrounding implementation rather than the practical impact. It’s a huge bill with wide implications for all of healthcare, but by using my perspective as a rehabilitation specialist I’m going to explain what Patient Protection and Affordable Care Act of 2010 (ACA) means for people living with brain injuries. My analysis demonstrates core principles that will affect every one of us. While some of the reimbursement changes are still vague or experimental, creating some anxieties for providers like myself, these concerns take second stage to the advancements in civil society the ACA represents. We’re embarking on a transformative period when our most vulnerable citizens will see their circumstances fundamentally improve.
I think no recent piece of legislation embodies America’s confused relationship with disability and access better than the Genetic Information Nondiscrimination Act of 2008 (GINDA). Signed by George W. Bush, GINDA prohibited insurers from factoring our personal genetic code when subjecting us to medical underwriting – the actuarial practice of setting insurance prices according to our apparent risk of becoming ill. The law meant that able-bodied Americans now had protection against economic persecution for pre-crimes, so to speak, detailed in their mutated genes. But once diseases manifested themselves, all bets were off. Insurance companies could refuse to issue a policy outright or price the policy prohibitively high once your genetic condition took hold. Insurers could also sell plans that excluded any costs associated with a particular condition. The day GINDA was signed, America declared the superiority of phenotype over genotype – it’s how disabled you were on that day that defined the level of protection you received from the grossest cruelties of a free insurance market. If you had Huntington’s disease on May 21, 2008, GINDA did nothing to help you. But if Huntington’s was merely in your future, a mutation laying silently in wait, GINDA reinforced your worth to society. You weren’t broken and rejected… yet.
Back in 2008 an overwhelming majority of Republicans and Democrats in Congress could agree that we can’t allow the market to penalize us for diseases we are likely to develop. But just two years later, following a vitriolic debate characterized by much disinformation, only Democrats voted for the bill that closed the gaping loophole left by GINDA, applying those protections to all: the healthy, diseased, and pre-diseased. The key changes still aren’t understood by many Americans, and won’t be until they happen. Though millions of Americans fear the ACA restricts their freedom, the bill actually secures us new freedom, especially for those who’ve long been shut out. Come 2014, medical underwriting is dead. Insurance rates will vary only by geography, smoking status, and a maximum of a 1 to 3 ratio between the youngest and oldest policy holders. Insurance plans must accept all customers regardless of pre-existing conditions. GINDA’s genetic blindfold on insurance plans is now moot, superseded by the ACA’s universal fairness. Since the Americans with Disabilities Act in 1990, people with functional impairments have increasingly expected and received unfettered access to the public market. But the venue itself is not enough; it’s what’s on the other end of the ramp that matters. The ADA mandated nothing about existence of a meaningful market with accessible products and services needed by disabled people. The ACA finally stocks the shelves in our most important public market.
Those products include coverage without the annual and lifetime caps that often made private insurance useless for patients with significant disabilities, forcing many to rely on public insurance – Medicaid and Medicare. Those severe brain injury survivors who were left with a set of residual physical, cognitive, and mental health problems could no longer expect to get private insurance once their COBRA ran out. No more. This bargain also means that private insurance plans now have real long term exposure. Previously they could expect their most injured customers would fall off their rolls and go onto public insurance. The even ACA guarantees portability – your plan can go with you wherever you move. So now it makes a big difference to corporate bottom lines just how much our intensive early rehabilitation efforts restore lost function and lay the groundwork for future health. I’m hopeful that these new economic realities will encourage more insurers to let us finish the work we’ve started.
Insurance plans now have to distill all the important coverage terms and exclusions in a document that’s a maximum of eight pages long with twelve-point font. I’m hopeful that all sorts of nasty surprises will be made plain so that shoppers can choose wisely. At my rehabilitation hospital, we’ve come across a number of brain and spinal cord injury patients whose policies were canceled because they were intoxicated at the time of their accident. This intoxication exclusion, buried deep in the fine print, serves no possible public good if the policyholder is unaware she’s got such an exclusion. In many states, these exclusions are outlawed. In those where they stand, like Georgia, insurance company lobbyists defend the practice to regulators as only fair if the customer’s risky behavior contributed to her own injury. They also offer the excuse that they’re encouraging responsible behavior. But in practice the exclusions are irresponsible. They do nothing to stop the accident from happening, as nobody knows about them until they get the bill after the fact, and they apply to all beneficiaries of a policy including teenage children whose behavior certainly can’t be controlled even if they were aware of insurance policy terms and conditions. The exclusions result in added costs to public insurers while insurance corporations reap the profit from lower risk policies. Timothy Jost, a health policy analyst at Washington and Lee University, confirms that nothing in the ACA specifically addresses this kind of exclusion. But I think it’s one example of a trick that will be hard to pull off in the new system both due to the mandated transparency and a new shared responsibility: fellow private insurers will be none too pleased when their competitor dumps an expensive patient at their doorstep – because once the injury has happened, any one among them could very well start paying for its aftermath at open enrollment time.
The ACA intended for everyone with incomes below 138 percent of the poverty line to qualify for expanded Medicaid, and for everyone else up to 400 percent of poverty to be eligible for subsidies to help defray exchange plan premiums. When the Supreme Court ruled last summer against the state mandate for Medicaid expansion (and preserved the individual mandate) that created a boondoggle now that many Republican governors are caving to Tea Party interests and refusing the Medicaid expansion aspect. I think the expansion is inevitable in most of these remaining states, as these states are passing up major federal economic incentives in favor of devastating losses. In my state the major trauma center serving all the region’s people, Grady Memorial Hospital, stands to lose 45 million dollars of federal disproportionate share grants that are fazing out post-ACA because they’re meant to compensate critical safety net hospitals for the amount of uninsured patients they serve. Grady’s CEO John Haupert is already on the record saying something big will have to go next year. At a recent panel discussion in Atlanta hosted by the Alliance for Health Reform Mr. Haupert suggested that mental health care might have to go, a move that would place incredible pressures on the state’s prison system. The people of Georgia may not support stiff gun controls but they are as aware as people in Arizona or Colorado or Connecticut that we must strengthen, not weaken, our mental health care system. The Arkansas option – using federal dollars to buy private insurance for the poor instead of expanding Medicaid, will be attractive to some of these remaining hold-out governors. Though more expensive than the ACA’s intended expansion, this politically sensitive strategy is far better than nothing.
For most Americans then, the ACA is ending a major dysfunctional social dynamic with which rehabilitation providers are intimately familiar. Our system’s built-in disincentive to work will weaken. We currently operate in a Kafkaesque system where valuable insurance benefits are only available to our patients if they can prove their inability to work, and stay that way. This undercurrent has long eaten away at much of what we do, especially in vocational rehabilitation. If a vocational rehabilitation program is successful in returning their client to a workplace, their client may face losing their insurance. Depending on one’s medical problems insurance can be more important than a job. Acceptance of work has always meant acceptance of job insecurity. If you were lucky enough to earn a job with good benefits after recovering from a devastating injury, the insurance might not cover your needs, and nobody could promise your continuous employment (and thus continuous access to your insurance). Think about how hard that decision is for someone who’s faced losing their health; there is an overwhelming sense of insecurity that must be overcome. These pressures can affect how people view themselves and their capabilities at a subconscious level. It’s only through the preservation of the fact of disability that many trauma survivors get Medicaid, SSDI and Medicare. Now this linkage between disability and insurance will be destroyed. I think millions of people all over the nation will discover increased security next year, enabling them to try all sorts of new endeavors.
I’m concerned about how some of the cost containment efforts embedded in the ACA will play out in reality. Already, most rehabilitation centers in this country cap their inpatient daily therapy duration at three hours regardless of an individual patient’s capacity to do more (and perhaps discharge earlier). This generic intensity was a fact of life well before I started working in rehabilitation; it’s a fact of life created by reimbursement models. I’ve always felt it’s odd – as a physician I’ve never had an insurer limit the dose of any approved medication I prescribe, so why is the most important prescribed treatment – therapy – dose-capped? If done right the new models, like bundled payments, could finally allow providers to use whatever doses and intensities of all treatments are necessary to get the job done in the most efficient way possible. As quality metrics are devised and set I will remind policymakers that people with disabilities needing long term care represent the single greatest and growing expense for public insurance. Money spent on rehabilitation pays off multiple fold in distant fiscal years. Our interventions represent a big up front expense to head off even bigger long term expenses, especially for the youngest patients. Even when (or especially when) the rehab involves training friends and family to provide care at home, the country benefits. Our system would have crumbled long ago were it not for the estimated 42.1 million unpaid community carers that are key to keeping people with significant disabilities out institutions.
The ACA will make us a stronger, fairer society, ending some of the cruel inconsistencies that created additional barriers for millions who could least manage them. I believe that the American work ethic, when undergirded by a sense of security about one’s basic health needs, will exponentially improve our country in coming decades. And as a rehabilitation provider I welcome the equalization of the playing field. More of my patients are going to get back on their feet – literally.