An Autism Diagnosis: Still the Key to Unlocking Needed Services?

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Cross-Posted at Bill of Health

In a recent, very moving, post about her son’s diagnosis with autism at age eight, blogger Amy Storch writes: “I guess I should mention the obvious — district services for Autism are much more comprehensive than ADHD.” An autism diagnosis should not, as a matter of law, be the key that unlocks needed special education services. Both autism and ADHD “count” as disabilities under the Individuals with Disabilities Education Act (the relevant regulation is here), and the Act provides that a child with either diagnosis who needs special education services is entitled to an educational program “designed to meet their unique needs.” As a matter of fact, though, an autism diagnosis may mean—as it apparently does in Storch’s school district—a more comprehensive program. An autism diagnosis can also be the key to getting necessary services outside of the school setting, through private health insurance.

According to the advocacy group Autism Speaks, 37 states plus the District of Columbia and the United States Virgin Islands have enacted laws requiring state-regulated private health insurance plans to pay for applied behavior analysis and other therapies children with autism often need. As I blogged about previously here, some of these state insurance mandates are relatively broad—New Jersey’s law requires private insurers to cover applied behavior analysis for children with autism, but also to cover occupational, physical, and speech therapy for individuals with “autism or another developmental disability.” Other states’ mandates, however, are strictly limited to children on the autism spectrum. Daniela Caruso of Boston University School of Law writes about Florida’s decision to limit its insurance mandate to children with autism here, attributing it at least in part to advocates’ success persuading legislators to view autism through a “dual frame of beauty and invasion.”

The Patient Protection and Affordable Care Act’s requirement that individual and small group health insurance plans cover ten essential health benefits, and in particular its requirement that plans cover “rehabilitative and habilitative services and devices,” promised to ease access to applied behavior analysis and other therapies often needed by children by autism. Habilitative care is left undefined in the statute, but it is defined at HealthCare.gov as “[h]ealth care services that help you keep, learn, or improve skills and functioning for daily living,” for example “therapy for a child who isn’t walking or talking at the expected age.”

There is a wrinkle, however. As Michelle Andrews discusses in this article at Kaiser Health News, applied behavior analysis and other therapies might fall into the category “rehabilitative and habilitative services and devices,” but a case can be made that they also fall into another covered category, “mental health and substance use disorder services, including behavioral health treatment.” This is of significance because if autism therapies are habilitative services, they can be subject to non-dollar limits, for example limits on the number of hours or units of service that an insurance company will cover. If they are mental health services, then the Mental Health Parity and Addiction Equity Act of 2008 would apply and such limits might not be permissible.

In her article, Michelle Andrews highlights a bulletin issued by the Connecticut’s Insurance Department in April of this year in which it determined that health insurance plans could convert the dollar limit on “behavioral therapy” set forth in the state’s autism insurance mandate into non-dollar limits. The Insurance Department wrote that “[b]ecause the behavioral therapy benefits are classified as habilitative benefits, they are not considered subject to mental health parity. This is consistent with HHS guidance and with the approach taken by other states.”

Connecticut’s autism insurance mandate defines “behavioral therapy” as “any interactive behavioral therapies derived from evidence-based research, including, but not limited to, applied behavior analysis, cognitive behavioral therapy, or other therapies supported by empirical evidence of the effective treatment of individuals diagnosed with an autism spectrum disorder, that are: (A) Provided to children less than fifteen years of age, and (B) provided or supervised by (i) a behavior analyst who is certified by the Behavior Analyst Certification Board, (ii) a licensed physician, or (iii) a licensed psychologist.” There may be a meaningful difference between “behavioral therapy” and mental health services, but it is not obvious to me from the statutory definition.

Could this be a case where the autism diagnosis functions to limit access to services, however categorized or defined? Michelle Andrews quotes Sara Rosenbaum of George Washington University’s School of Public Health and Health Services as follows: “The parity rule seems to say you can’t play games like this.”

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“Distressed Babies” and Employment-Based Health Coverage

jacobi-176x220_1AOL CEO Tim Armstrong was the center of a story bringing together issues of whining one-percenters, employees’ rights to privacy in their health information, and the growing evidence that some employers are simply not good agents for their employees’ health coverage.

 Armstrong is an accident-prone speaker. Most recently, he gained attention for the way he explained a change in AOL’s methods of contributing to employees’ 401(k) plans. AOL announced that I planned to shift from a system by which employees received matches for their contributions each pay period, to one in which the company contributes only at the end of the year. AOL has been criticized for this move, as it deprives employees who move on during the year of any contributions, and denies ongoing employees a substantial amount of the money’s time value.  AOL has had second thoughts, and apparently will not change its current 401(k) policy.

But Armstrong’s curious explanations for the harsh move generated more interest than the change itself, and the story therefore lives on. After initially explaining that Obamacare made him do it, a published informal transcript of his remarks to employees has him shifting the blame in part to the cost of care for two mothers and children covered by AOL’s employee health plan:

[W]e had two AOLers that had distressed babies that were born that we paid a million dollars each to make sure those babies were okay in general.

It is not clear from the reports what Armstrong meant by “distressed babies.” Also unexplained was how this particular health cost so deeply affected AOL, with over 5,000 employees, $2.3 Billion in gross revenue in 2013 (and second on Fortune’s list for profit growth), and with a CEO pulling down over $12 Million. Of course some insureds use more health care than others in any year; that’s why the cost-spreading mechanism of health insurance is so important. Or, as Deanna Fei, identifying herself in Slate as the mother of one of the babies, said,

[W]e experienced exactly the kind of unforeseeable, unpreventable medical crisis that any health plan is supposed to cover. Isn’t that the whole point of health insurance?

In short, the message is that two covered families suffered catastrophic childbirth experiences last year, and those experiences justified a reduction in retirement benefits. Really. But as even the WSJ noted, employees have privacy rights in their medical information. And the vivid description of the employees’ experiences may well constitute the release of Protected Health Information (PHI), leading to the families and their medical experiences being outed to coworkers and others.

AOL may be self-insured, in which case it operates a health plan that may be a covered entity for HIPAA purposes. And/or, AOL may have a Business Associate relationship with an insurer, third party administrator, or other covered entity. It appears, in any event, that Armstrong may have received PHI regarding these two employees – and then felt free to use the PHI as a talking point. AOL and/or its plan may have to deal with charges of violation of the following HIPAA regulation:

[With some exceptions,] a group health plan, in order to disclose protected health information to the plan sponsor or to provide for or permit the disclosure of protected health information to the plan sponsor by a health insurance issuer or HMO with respect to the group health plan, must ensure that the plan documents restrict uses and disclosures of such information by the plan sponsor consistent with the requirements of this subpart.

45 CFR 164.504(f)(1)(i). It is unlikely that disclosing the information to justify cutting back on pension benefits is a permitted disclosure.

In addition, the ADA (see 42 USC § 12112(d)) limits the use of medical information by employers – whether or not the employee is a person with a disability. The EEOC states [  ] the general rule well:

Medical records are confidential. The basic rule is that with limited exceptions, employers must keep confidential any medical information they learn about an applicant or employee.

So, Armstrong’s discussion of his employees’ medical condition might violate the law. The tone of Armstrong’s message with respect to his employees’ benefits also raises an issue I’ve touched on in a previous post. Briefly stated, the compromises leading to the enactment of the Affordable Care Act left employment-based health coverage at the center of our health care system. Most employers are good stewards of their employees’ health coverage, and make decisions in the employees’ best interest. Some do not embrace the role of faithful agent for their employees in such matters – far from it. As we work to improve the implementation of the ACA, we should be mindful that there were and are other ways to organize our health insurance system, many of which would take the Tim Armstrongs of the world out of the position of making decisions about Americans’ health care, divesting him of the power to disclose PHI on a whim, and perhaps protecting his employees from his next cut – perhaps of their health benefits.

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Treating Addiction in Pregnant Women and New Mothers: A Promising Application for Social Impact Financing?

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Cross-Posted at Bill of Health

Last week, vtdigger.org ran an interesting article by Laura Krantz on the difficulties pregnant women and new mothers who are addicted to drugs have accessing not just drug treatment but also all of the other services and supports they need. Krantz reported on a hearing before the Human Services Committee of the Vermont House of Representatives at which a new mother in recovery from addiction, “a neonatalogist, a substance abuse clinician, a Health Department employee and a representative from the Phoenix House, a residential treatment facility in Brattleboro … all said women need not only treatment, but housing, transportation and help finding jobs.”

Alice Larned, a substance abuse clinician at the Lund Family Center in Burlington, told Krantz that spaces in residential detoxification facilities are increasingly scarce. The demand for transitional housing for women who have completed inpatient detoxification also exceeds the supply. Add to this the sad fact that women can wait a year or more for an appointment with a physician who can treat them with methadone or buprenorphine. Larned told Krantz that many of the women who start treatment with her are taking buprenorphine they bought illegally, an “indication they want help ‘yet we don’t have the legitimate means for them to get this medication[.]’”

In another story that ran last week on NPR, Steve Zind spoke with Harry Chen, the Commissioner of the Vermont Department of Public Health, who emphasized the complexities inherent in treating addiction in pregnant women and new mothers. To do so successfully, Commissioner Chen explained, “requires so many different systems working together well: the social service system, the health care system, the substance abuse system and even to some extent the correctional system.”

I confess that one reason that these two articles caught my attention is that Alice Larned is my sister.  Another reason, though, is that the problem described in the articles seems like a promising application for social impact financing, something that has been in the news here in New Jersey in recent weeks.

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The Federal Circuit Decides Future Lost Earnings Award Not Authorized in Vaccine Case in Which Child Died

CaptureThe National Childhood Vaccine Act of 1986 requires parties seeking relief for vaccine-related injuries to proceed through a federal vaccination claims system.   If a plaintiff prevails in her suit, she (or her estate) will receive damages for pain, suffering, and expenses.  Significantly, other awards include death benefits or future earnings.  On October 28, 2013, the Federal Circuit answered in the negative the question of “whether the estate of a petitioner who dies prior to judgment is entitled to compensation for lost future earnings.” 

Tembenis v. Secretary of Health & Human Services arose out of the epilepsy four-month-old Elias Tembenis developed following vaccination for Diptheria–Tetanus–acellular–Pertussis.  His parents filed a Petition for Vaccine Compensation but while the petition was still pending, Elias died of his disorder at age seven.  In 2010, a special master determined the vaccine caused Elias’ epilepsy and death.

After the special master’s determination, Elias’ estate and the Secretary of Health and Human Services agreed on damages.  The estate received a $250,000 death benefit, $175,000 for actual pain and suffering and past unreimbursable expenses, and $659,955.61 in future lost earnings.  The Secretary reserved the right to challenge the future lost earnings award; the special master determined that Federal Circuit precedent suggested that the estate was entitled to lost earnings.   The Secretary appealed to the Claims Court which upheld the special master’s ruling.

The Secretary then appealed to the Federal Circuit.  The Circuit court analyzed 42 U.S.C. § 300aa–15(a)(3)(B):

In the case of any person who has sustained a vaccine-related injury before attaining the age of 18 and whose earning capacity is or has been impaired by reason of such person’s vaccine-related injury for which compensation is to be awarded and whose vaccine-related injury is of sufficient severity to permit reasonable anticipation that such person is likely to suffer impaired earning capacity at age 18 and beyond, compensation after attaining the age of 18 for loss of earnings determined on the basis of the average gross weekly earnings of workers in the private, non-farm sector,  . . .

The Federal Circuit interpreted the language to determine the statute only allows for recovery of future lost earnings.  The Court acknowledged the statute does not expressly require a claimant to be alive, but it also does not expressly state an estate can recover future lost earnings of a decedent.

The Court observed that the word “impaired” implies the victim must be living.  When the claimant dies before 18, no reasonable expectation exists that she would be working after 18.  Thus entitlement to a future lost earnings award is dependent upon the claimant being alive.  Further, the Court stated, receiving both a death benefit and a future lost earnings award would be duplicative.  The Court took pains to express sympathy to the family, noting that the death benefit of $250,000 was due to be increased as it had not been amended since the statute’s enactment in 1986.  However, the amount of payment can only be changed by Congress and even if it does happen, it will be of no consolation or compensation to the Tembenis family.

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Concussion Prevention: When Equal Treatment Might Not Make Good Policy

tara-ragoneI was stunned to learn recently that female lacrosse players, at least in my town in New Jersey, may not wear hard helmets even though male lacrosse players must wear them.  This struck me as ludicrous and unfair.   Both sports involve athletes running around with long sticks, hurling dense rubber balls at high speeds.  It seemed to me that balls and sticks can strike players in the head and players can collide in either sport.  How could we care more about preventing traumatic brain injury (TBI) in boys than in girls?  I was outraged.  But as it turned out, I also was a bit uninformed.  It is not as clear as I thought it would be that we should require girls to wear helmets.

A common objection is that female and male lacrosse are very different sports subject to different rules and requiring different skills.  Male lacrosse involves much more brute physical contact, whereas female lacrosse does not permit body checking and demands finesse.   As a female senior lacrosse player explains, because girls’ lacrosse sticks have shallower pockets, girls “’have to be more skilled with our cradling, . . . [so our] game is more graceful.’”  A male senior midfielder acknowledged that the girls’ “’stick skills are unbelievable’” and that “’the girls’ version is more pure.’”  Some believe there is less need for helmets in girls’ lacrosse because of these differences.  Moreover, there is concern that requiring girls to wear helmets will encourage girls to play more like boys, which would risk losing the valuable uniqueness of girls’ lacrosse.

As much as I want to honor female players’ pride in their skills and finesse, science should drive the policy decision whether to require girls to wear helmets.  Research by Nationwide Children’s Hospital in Columbus, Ohio reveals that girls’ lacrosse has the third-highest rate of concussion among female sports, after soccer and basketball, and “its in-game rate is only about 15 percent less than the rougher male version.”  But what do we know about whether helmets can reduce that risk?  Not enough. Read more

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