PPACA and the Growing Shortage of Pediatric Subspecialists

Over the course of this year, a spate of articles and op eds have highlighted a growing shortage of pediatric subspecialists.  Earlier his month, Amy Mansue, CEO of Children’s Specialized Hospital here in New Jersey, addressed the problem in a very interesting post on the National Association of Children’s Hospitals’ With All Our Might blog.  Ms. Mansue describes a recent visit to Capitol Hill during which she discussed the implementation of the Patient Protection and Affordable Care Act, explaining to the staffers that:

[t]he differences between strategies to address the needs of the newly insured children versus strategies to address the needs of adults couldn’t be more different.  Start with the basic fact that there is a critical shortage of specialists in pediatrics, where the biggest issue facing adults is how to access primary care. There can be a utilization of physician extenders in the short run until more primary care physicians are trained; there is no similar ‘quick fix’ in pediatrics.

Pediatric neurologists and developmental-behavioral pediatricians are in especially short supply.  A survey of children’s hospitals conducted by the National Association of Children’s Hospitals and Related Institutions in December 2009 revealed average wait times of 9 weeks for an appointment with a pediatric neurologist and 13 weeks for an appointment with a developmental-behavioral pediatrician.  An earlier study published in Pediatrics found that, in addition to enduring long waits, parents and children also travel long distances to see these specialists–on average 73 miles to see a subspecialist in neurodevelopmental disabilities and 44 miles to see a developmental pediatrician.

This is concerning for a host of reasons, including the importance of early, appropriate intervention to the future success of children with developmental delays.  As I discussed previously here and here, the “right” medical diagnosis can be key to accessing needed services, as can a thorough written evaluation and a doctor willing to advocate on a child’s behalf.  This is true whether a family is fighting for publicly-provided disability benefits or special education services or to get a private insurance plan to pay for medically necessary therapies.

What explains the subspecialist shortage?  As Ms. Mansue puts it, “it is all about math.  There is no incentive to go through an additional decade of training to get paid less than what a pediatric nurse practitioner is now demanding in my home state of New Jersey.”  Congress has tried to change the equation.  PPACA provides for loan forgiveness of up to $35,000 per year for up to three years for pediatric subspecialists who “work for a provider serving in a [Health Professional Shortage Area] or medically underserved area, or among a medically underserved population that has a shortage of the specified pediatric specialty and a sufficient pediatric population, as determined by [HHS], to support the specified pediatric specialty.”  But funding for this measure has not yet been appropriated.  The federal government has also attacked the problem through its Children’s Hospitals Graduate Medical Education Payment Program, which provides funding for specialty training for pediatricians.  According to a recent New York Times op ed, however, this program’s funding is also uncertain, suggesting that an end to the shortage of pediatric subspecialists may not be in sight.

Professor Gaia Bernstein on ‘Intensive Parenting’ and the Law

According to Health Law Prof Blog, Seton Hall Law’s own Professor Gaia Bernstein and co-author Zvi Triger  led in SSRN Health Law Paper downloads last month for their paper, “Over Parenting,” forthcoming in U.C. Davis Law Review. In addition to taking the number one spot at SSRN, Professor Bernstein appeared in the New York Times, Forbes Magazine and Canada’s leading newspaper, The Globe and Mail, concerning her recent scholarship on “Intensive Parenting” and the Law. These articles follow on the heels of another recent article in the ABA Journal. (See all below).

Regarding the general perception that “Intensive Parenting” or “Helicopter Parenting” is a norm appropriate for unmitigated aspiration, The Times writes:

Bernstein and Triger are not so sure. They cite studies that suggest what we have discussed on Motherlode before, that what they call intensive parenting (which others dub helicopter parenting or smothering mothering) can cause more harm than good. It is creating an anxious, dependent generation, they write, and it can “seriously undermine one of the most important roles of parents, namely, nurturing a sense of independence and separation from the parent.”

They fear that the trend is already being codified into law. In custody cases, lawyers advise parents, particularly the one who might have had less day-to-day participation in the children’s lives, to enter what Bernstein calls “the race for involvement.”

“It becomes a strategy, to know all the teachers, coach little league, text your children 20, 30 times a day,” she said in an interview.

Professor Bernstein and her co-author have also cautioned that “the law repeatedly incorporates child-rearing practices into mandatory legal standards and that we should expect to see pressure on legislatures and courts to turn sophisticated child rearing practices used by Intensive Parenting adherents into legal standards. ‘Some child rearing practices are desirable social norms but not desirable legal standards,’ Professor Bernstein explained. “For example, some states now place women who consume alcohol during pregnancy under civil confinement. Would we want to see pregnant women who do not to take folic acid vitamins–which reduce the probability of birth defects– similarly placed under civil confinement?”

“The authors warn against use of the law to enforce Intensive Parenting. Although research has shown that Intensive Parenting has important advantages, a rising body of research has shown that Intensive Parenting can seriously undermine one of the most important roles of parents, namely, nurturing a sense of independence and separation from the parent.  Disconcertingly, this research also shows that deficiencies correlated with Intensive Parenting place this generation at a higher risk for anxiety disorders and making poor choices regarding alcohol and drug abuse and sexual relationships.”

“Intensive Parenting is largely a socio-economic construct. It is class, race, ethnicity and culturally dependent and tends to place its weight squarely upon the shoulders of women-who are still overwhelmingly responsible for the raising of children. A hasty and uncritical incorporation of such standards in a multicultural society would increase existing biases and force Intensive Parenting on those who may be financially unable or ideologically unwilling to adopt it.”

Read the New York Times article, Defining a Successful Parent.

Read the Forbes article, Custody Goes To The Craziest Parent.

Read the Globe and Mail article, Give Helicopter Parents a Break

Read the ABA Journal article, Courts Reward Helicopter Parents, Two Law Profs Say

Read more about Professor Bernstein’s “Over Parenting,” forthcoming in the U.C. Davis Law Review, here.

Recommended Reading: Recent Scholarship on Medical Decisionmaking for Children

Alicia Ouellette’s Shaping Parental Authority over Children’s Bodies (published in the Summer 2010 issue of the Indiana Law Journal and available on SSRN) highlights four “shaping cases,” including “a case involving a white father who used surgery to reshape the eyes of his adopted Asian child; another in which parents used human growth hormone to add a few inches onto the adult height of their young son; a third in which a mother consented to liposuction for her twelve-year old daughter; and the case of Ashley X, a young girl with profound disabilities whose parents elected to stunt her growth and remove her breasts and uterus in order to continue caring for her at home.”  Professor Ouellette argues that these cases reveal that the “traditional hierarchical model of the family at play in the health-care setting, which starts from an assumption of parental power” and “take[s] as a given that, absent grievous harm or death, parents have a right to modify a child’s body,” fails to adequately protect or respect children.  She advocates instead the adoption of a “trust-based construct,” under which parents would be conceived of as trustees of their children’s welfare (e.g., their need for food, safety, and nurturing) and developing autonomy rights (e.g., the right to self-determination that will be theirs once they reach adulthood).  Under Professor Ouellette’s trust-based construct, the four shaping cases she identifies would trigger third-party review, because of the potential for conflict between the parents’ trustee-like duties to their children and the parents’ personal interests.  This is not to say that the parents’ decision to “shape” their children would be overruled in all four cases; Professor Ouellette argues that the outcomes of the third-party reviews would likely vary.  Overall, this is a fascinating (and very readable) article in which facts that might seem sensationalistic at first blush are used as a launching pad for a thoughtful theoretical analysis with broad potential applicability.

Rachel Camp’s A Mistreated Epidemic: State and Federal Failure to Adequately Regulate Psychotropic Medications Prescribed to Children in Foster Care (forthcoming in the Temple Law Review and available on SSRN) also takes on the issue of medical decisionmaking for children, focusing on children in foster care for whom psychotropic medication has been recommended.  Professor Camp persuasively argues that parents whose children have been removed and placed in foster care have a right to consent before their children begin taking such medications, because they fall outside the bounds of “ordinary” medical care.  “[W]hen a parent is unwilling or unable to consent,” Professor Camp advocates for “[c]ourt review with an evidentiary burden on the party seeking the medication, not agency acquiescence[.]“  A meaningful and enforced consent requirement would “force[] a check on a system that has become complacent about how psychotropic medications are administered to children in care;” it could also “empower parents to parent — to assess risks, benefits, and make decisions for their children.”  Professor Camp’s article provides an excellent summary of the (startling) facts about the extremely high rates of use of psychotropic medication by children in foster care, a nuanced and thorough accounting of the possible explanations for these high rates, a helpful overview of the applicable law, and concrete recommendations for state-level legal and policy change.

Fast Food, Childhood Obesity & the Hidden Costs of that Free Toy

Late last month, a consumer advocate group called the Center for Science in the Public Interest (CSPI) announced its intention to sue McDonald’s for using toys to market Happy Meals to children.  In an open letter to McDonald’s, CSPI litigation director Stephen Gardner alleged the toys were part of an unfair and deceptive marketing tactic which gave children “pester power” and taught them unhealthy eating habits.  Mr. Gardner further alleged the company violated Massachusetts, New Jersey, Texas, and California consumer protection laws.  Apparently McDonald’s recent Shrek 3 toy promotion was the final straw (and, somehow, the risk of cadmium exposure isn’t a concern here).  In a follow-up press release, Mr. Gardner also compared McDonald’s to:

… the stranger in the playground handing out candy to children.  McDonald’s use of toys undercuts parental authority and exploits young children’s developmental immaturity — all this to induce children to prefer foods that may harm their health.  It’s a creepy and predatory practice that warrants an injunction.

McDonald’s must decide later this month whether it will continue its Happy Meal toys or succumb to pressure.  So far the company believes that “[g]etting a toy is just one part of a fun, family experience….”

Before you completely write-off this lawsuit and characterization as over-the-top theatrics, just remember that CSPI already has a proven track record.  In 2006, the group sued KFC for using partially hydrogenated oils to deep-fry its food.  KFC subsequently switched to a trans-fat-free frying oil.  That same year CSPI also negotiated a settlement agreement with the Kellogg Company which set certain nutrition standards for marketing to children.  Better not tell CSPI about Cracker Jack and removable tattoos or Topps baseball cards and chewing gum.

In all fairness, CSPI isn’t the only group focusing on marketing to children.  Earlier this year in California, the Santa Clara County Board of Supervisors banned the inclusion of toys with meals numbering 485 calories or more.  Granted, Supervisor Donald Gage voted against the ordinance because “[i]f you can’t control a 3-year-old child for a toy, God save you when they get to be teenagers.”  The Los Angeles Times has reported on the increasing number of fast food television advertisements directed at children, particularly non-white children.  Likewise, CNN has reported on successful junk food marketing campaigns through the use of cartoon characters.  Perhaps CSPI and its supporters should go after DreamWorks and other studios whose agents negotiate these marketing agreements.  Just a thought.

This concern over McDonald’s Happy Meals and developing good eating habits in children coincides with the Trust for America’s Health (TFAH) report “F as in Fat: How Obesity Threatens America’s Future 2010.”  The report found that 38 states have adult obesity rates above 25 percent, a sharp increase from 20 years ago when no state had an obesity rate above 20 percent.  (Click here to see how your state weighs in.)  According to TFAH executive director Jeffrey Levi:

[o]besity is one of the biggest public health challenges the country has ever faced, and troubling disparities exist based on race, ethnicity, region, and income….  Millions of Americans still face barriers — like the high cost of healthy foods and lack of access to safe places to be physically active — that can make healthy choices challenging.

The report suggested a connection between income disparities and adult obesity: “35.3 percent of adults earning less than $15,000 per year were obese compared with 24.5 percent of adults earning $50,000 or more per year.”  The report also showed that “more than 12 million children and adolescents are considered obese” and half of Americans believe this is an important issue to address.  However, rather than suggesting that consumers sue fast food and junk food companies, the report recommended investing in public health initiatives and prevention programs.

I’m not a parent, so I won’t preach about better parenting skills when it comes to “pester power” and how a child’s eating habits are determined as much by their parents as the cartoon characters selling the food.  I’ll just say that there was seldom any debate with my parents over the foods that I ate as a child.  Admittedly, there sometimes are no other alternatives.  Whether you’re a high school athlete on the road, a parent with no time to make dinner, or looking for an inexpensive meal, fast food is the cheap and easy way to go.  Perhaps the key is moderation?

Does this mean CSPI should hold the fast food (and junk food) companies responsible for the development of our eating habits, from childhood to adulthood?  The TFAH report also referred to obesity liability laws in 24 states protecting restaurants, manufacturers, and marketers from weight-related lawsuits.  Take note, CSPI.  (And you, dear reader, take note of Michael Ricciardelli’s post containing some staggering numbers relating to the healthcare costs of managing Type-2 diabetes, in which obesity plays a factor, and Professor Pasquale’s beverage tax utilitarian calculus.)

NIH Panel Recommends Medico-Legal Reform to Reduce Elective Repeat Cesarean Delivery Rate

In December 2009, an Arizona woman made the news when, in her ninth month of pregnancy, she left her husband and three sons behind and traveled to Phoenix, six hours away from her home, to await the birth of her fourth child.  She took these drastic measures because she wanted to give birth vaginally but her local hospital did not allow women who have had a cesarean section to attempt a vaginal delivery.

Last week, the NIH held a consensus development conference on vaginal birth after cesarean (”VBAC”) to evaluate, among other things, the sharp increase in elective repeat cesarean deliveries in the United States and the medical and non-medical factors that have caused it.  The panel convened by the NIH found that both a trial of labor in women who have had a prior cesarean and an elective repeat cesarean delivery have “important risks and benefits” that “differ for the woman and her fetus.”  A trial of labor is associated with a statistically significant increase in risk of uterine rupture and in risk of perinatal death.  Elective repeat cesarean delivery, on the other hand, is associated with a statistically significant increase in risk of maternal death.  Moreover, as the number of prior cesareans goes up, the risk of serious harm to both mother and baby does too, which is of particular concern to women who hope to have large families.  As the panel notes, these facts and figures pose “a profound ethical dilemma for the woman as well as her caregivers, because benefit for the woman may come at the price of increased risk for the fetus and vice versa.”

The panel concluded that for certain women — those with a “prior low transverse uterine incision” — a trial of labor is a reasonable choice, albeit one that it increasingly constrained by difficulty accessing clinicians and facilities able and willing to offer it. Among the non-medical barriers to VBAC is a recommendation made by the American College of Obstetricians and Gynecologists and the American Society of Anesthesiologists that women with a prior cesarean not be permitted to attempt a vaginal delivery unless the hospital has “immediately available” surgical and anesthesia personnel.  The panel concluded that this recommendation should be reassessed in light of “other obstetrical complications of comparable risk, risk stratification, and in light of limited physician and nursing resources.”

The panel also found that “medico-legal considerations add to, as well as exacerbate” barriers to VBAC.  Midwife Amy Romano, who writes the Science & Sensibility blog for Lamaze International, explains that because “lawsuits focus entirely on the counseling around [uterine] rupture rates, and doctors are sued if that counseling isn’t done or documented effectively, then the doctor has a financial incentive to focus on rupture likelihood[.]“  This steers women toward elective repeat cesarean delivery and exacerbates the already formidable liability barrier to VBAC.  The panel predicted that “caps on noneconomic damages and reductions in physician malpractice premiums would result in fewer cesarean deliveries” and recommended that these and other interventions to reduce the liability barrier be developed, implemented, and evaluated to determine their efficacy.

What about the Kids? Health Care Reform and Children

During the reconciliation process of the House and Senate bills, one of the issues likely to be raised is what to do with the Children’s Health Insurance Program, commonly known as CHIP.  Under the Senate bill, federal financing for CHIP would be extended for another 2 years past the current expiration date of 2013.  The House bill, on the other hand, would allow CHIP to come to a close in 2013 since the bill plans to expand coverage for children through Medicaid and through the health insurance exchange– where subsidized health insurance would be available.  Whether or not these health reform initiatives will be able to meet the medical needs of children is a matter of debate.

CHIP is a “state-federal partnership” that was created in 1997 under the Balanced Budget Act to help insure those children who are from families that earned too much to qualify for Medicaid.  Similar to Medicaid, the federal government matches state dollars spent on CHIP (average of 57% federal responsibility for Medicaid spending, 70% for CHIP), but unlike Medicaid, the allocations to states for CHIP is capped.  CHIP also places greater discretion in  individual state’s hands regarding eligibility requirements.

One of the first bills Obama signed as President was the Children’s Health Insurance Program Reauthorization Act, or CHIPRA, in February 2009.  CHIPRA added $33 billion in federal funds to use towards providing coverage to 4.1 million children via Medicaid and CHIP through the year 2013.

In 2007, over 80% of eligible children nationwide participated in Medicaid or CHIP. Currently, 29 million children are enrolled in Medicaid, 7 million in CHIP. If CHIP were to be allowed to expire and absorbed (at least partially) by an expansion of Medicaid, however, the lower reimbursement rates for Medicaid could mean that those children transferred would not have access to as many health care providers as they would have had under CHIP.  While Medicaid might seem to be a sufficient substitute, it would still leave gaps that CHIP had filled if the reform does not include higher reimbursement rates for Medicaid and automatic enrollment provisions, as proposed by the House. In addition, as it stands, because of the relatively low reimbursement rates from Medicaid, many doctors have ceased to accept either new or all Medicaid patients.

The alternate option of funneling children to the insurance exchange does not seem promising either.  Many children currently enrolled in CHIP could become uninsured if their families cannot afford the plans offered in the exchange, which is a concern– as many families will still have a hard time meeting the premiums– even after the proposed subsidies from the government.  Senators Jay Rockefeller of West Virginia and Bob Casey of Pennsylvania have proposed to avoid some of these issues by expanding CHIP until 2019, a move that they say would benefit our country’s children by ensuring their access to health coverage.

In considering the options, it would behoove us to remember that “a stitch in time saves nine,” and that the regular health maintenance of children– much more likely for those children who have insurance– will pay dividends in the form of less of those costly visits to the emergency room and hospital stays. We would also be advised to remember that uninsured children in the hospital have bbeen shown to face a 60% greater risk of death than those children who have either private or government health insurance.

Report: Uninsured Hospitalized Children Face a 6o Percent Increased Risk of Dying

Sometimes the numbers speak louder than words, and the words are just painful to hear: the New York Times’ Prescriptions reports that

Researchers analyzed data from more than 23 million children’s hospitalizations from 1988 to 2005.

Uninsured children who wind up in the hospital are much more likely to die than children covered by either private or government insurance plans, according to one of the first studies to assess the impact of insurance coverage on hospitalized children.

Researchers at Johns Hopkins Children’s Center analyzed data from more than 23 million children’s hospitalizations in 37 states from 1988 to 2005. Compared with insured children, uninsured children faced a 60 percent increased risk of dying, the researchers found.

On a regular basis writers on this blog have discussed health reform as a moral imperative: citing religious doctrine, philosophers, economists and statistics to show that health care, unlike the purchase of automobiles and designer shoes, is not correctly a conventional aspect of a market economy– that the distribution of healing and life itself should not be premised upon who is the best capitalist, or, for that matter, the child of the best capitalist. That uninsured hospitalized children face a 6o percent increased risk of dying says that in a way that I simply cannot add to. Lack of insurance kills.

The Times noted that “Although the research was not set up to identify why uninsured children were more likely to die, it found that they were more likely to gain access to care through the emergency room, suggesting they might have more advanced disease by the time they were hospitalized.”

According to the Times the study showed that “uninsured children were in the hospital, on average, for less than a day when they died.”

Which is to say that it was too late by the time they got there.

The Times noted that “Alison Buist, director of child health at the Children’s Defense Fund, a nonprofit advocacy organization,” said in response to the study’s findings:

If you wait until a child gets care at a hospital, you have missed an opportunity to get them the types of screening and preventive services that prevent them from getting to that level of severity to begin with.

The Times further noted that

The most common reasons for children being hospitalized were complications from birth, pneumonia and asthma. The study found that the reasons did not differ depending on insurance status.

Read the full NY Times article here.
Read the Report here.

Short Shrift for Stillbirth in Health Reform?

Short Shrift for Stillbirth?[1]

The health reform bill that cleared the Senate Finance Committee earlier this month — S. 1796 — incorporates at least two pieces of pending legislation relating to maternal and infant health.  Section 1631 of the bill, authorizing Medicaid coverage for services provided at freestanding birth centers, adopts the text of S. 1423, while Section 1802, authorizing grants to fund services to new mothers struggling with postpartum depression or psychosis, is derived from the Melanie Blocker Stokes MOTHERS Act, which the House passed in March.  Not making the cut was legislation currently pending in the House — H.R. 521 and H.R. 3212 — and Senate — S. 1445 — aimed at reducing the number of stillbirths and sudden unexpected infant and child deaths.

According to the Centers for Disease Control, there are about 25,000 stillbirths — defined by the CDC as the death of a fetus after 20 weeks of gestation or, if the gestational age is unknown, weighing 350 grams or more — in the United States each year.  About 1 in every 160 deliveries in this country ends in a stillbirth.  (Per the CDC, these numbers may be low estimates, because they are based on information contained in death certificates, which studies have shown underestimate the true incidence of stillbirth.)   All too frequently in these cases, no cause of death can be determined.  As Alan Goldenbach put it in a moving essay in the Washington Post: “[T]he most common result after a stillbirth is a doctor telling grieving parents, ‘I don’t have an answer for you.’”

Better data is a necessary first step to finding answers.  As the American Congress of Obstetricians & Gynecologists explains, inconsistencies in the evaluation and classification of stillbirths across jurisdictions frustrate data collection efforts.  The United States has the lowest stillbirth autopsy rate among developed countries, and other important elements of a thorough post mortem evaluation, including analysis of the placenta and umbilical cord and genetic testing, may be left undone.  In addition, recordkeeping is inadequate.  Death certificates are often filled out — incompletely — before any investigation into the cause of death is done.  All of these factors hinder research.

First introduced in June 2008 by then-Senator Barack Obama, and now sponsored by Senator Frank Lautenberg (D-NJ) and Representative Frank Pallone, Jr. (D-NJ), the Stillbirth and SUID Prevention, Education, and Awareness Act of 2009 (H.R. 3212 and S. 1445; H.R. 521 is similar) would, among other things, (1) establish “a task force to develop a national research plan to determine the causes of, and how to prevent, stillbirth” and (2) require the CDC to develop guidelines for increasing the performance of thorough postmortem stillbirth evaluations and to continue its efforts to develop and disseminate a standard protocol for stillbirth data collection and surveillance.  The Act would also expand pilot programs in metropolitan Atlanta and Iowa which supplement the current passive information-gathering system — which relies on death certificates — with an active system in which trained staff make regular visits to clinics and hospitals to gather data.  A study published in 2007 in Public Health Reports demonstrated that Atlanta’s active surveillance system captured more stillbirths than were reflected in death certificates and gathered better data about each one. Expanding the Atlanta and Iowa programs to additional jurisdictions and taking the other steps provided for by the Act would put us on the road to answers to the countless painful questions posed by each unexplained stillbirth.

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[1] Credit for the idea and background research for this post goes to Catherine Finizio, the Administrator of Seton Hall Law’s Center for Health & Pharmaceutical Law & Policy.  On November 10, 2008, Cathy’s first and only grandson, Colin Joseph Mahoney, was stillborn at 39 weeks gestation.

Autism, Autistic-Like, and Health Insurance Reform

In his post Implementing Reform: Children with Special Health Care Needs, Professor John Jacobi notes that providing “health insurance” to children with special health care needs (”CSHCN”) does not ensure that their needs will be met.  Many private health insurance plans do not cover services such as occupational, physical, or speech therapy for CSHCN.  Private plans frequently limit coverage for such therapies to otherwise healthy children who need therapy to facilitate their recovery from an illness or injury.

Through their power to regulate insurance, states can require private plans to extend coverage for needed therapies to CSHCN.  For example, in legislation passed earlier this year, New Jersey became one of an estimated 15 states to specifically require insurers to provide treatment for individuals with autism.  Children with autism have benefited from a wave of recent legislation — 8 states enacted laws related to autism and insurance coverage in 2009 alone.  Children with other special needs have been largely left behind.  Many go without services; others may be shoehorned into an inappropriate autism diagnosis.  A recent documentary, Autistic-Like, tells the story of parents pressured to accept an autism diagnosis in order to access state-funded services for their son.  While New Jersey’s autism mandate is admirably broad, requiring private insurers to cover occupational, physical, and speech therapy for individuals with “autism or another developmental disability,” other states’ mandates are strictly limited to children on the autism spectrum.

Insurance mandates are attractive to legislators because they are off budget.  They are not, however, without cost.  The Council for Affordable Health Insurance, an insurance industry association, estimates that “an autism mandate increases the cost of health insurance by about 1 percent.”  Mandates like New Jersey’s, which extends beyond autism, could lead to even greater cost increases.  Piecemeal reform that privileges some special needs over others has costs of its own, however, not the least of which are borne by children living with labels that do not fit.

Implementing Reform: Children with Special Health Care Needs

The public option took a hit on Tuesday, as the Senate Finance Committee rejected amendments adding it to the Chairman’s Mark of the Baucus bill. As I have written previously, a public plan could improve care for the most vulnerable, including those with chronic illness, who tend to struggle for appropriate care under commercial plans. If the public option is dropped, the implementation of the resulting private plan-based system, including enforcement and regulatory design at the federal and state levels, becomes that much more critical to the task of assuring access to appropriate care.

The bills build on the benefits design of the private insurance market, as did Medicare and SCHIP before them. Those programs adopted familiar, private-sector benefits design and payment methods for political and pragmatic reasons: powerful stake-holders were comforted, and implementation was simplified. The bills build on this lineage. The Baucus bill, for example, requires all plans offered by the insurance exchanges to provide:

preventive and primary care, emergency services, hospitalization, physician services, outpatient services, day surgery and related anesthesia, diagnostic imaging and screenings (including x-rays), maternity and newborn care, pediatric services (including dental and vision), medical/surgical care, prescription drugs, radiation and chemotherapy, and mental health and substance abuse services that at least meet minimum standards set by Federal and state laws.

Pretty standard stuff. But describing a slate of covered benefits, and ensuring that that care is properly delivered by private, mostly for-profit firms, are different things entirely.

Take the example of children with special health care needs (”CSHCN”). The Maternal and Child Health Bureau of DHSS defines CSHCN as “…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” The Catalyst Center at Boston University identifies these children’s health conditions as including:

chronic illnesses such as diabetes, sickle cell anemia, cystic fibrosis, and heart disease; developmental disabilities such as mental retardation, sensory impairments, and autism spectrum disorders; emotional or behavioral health needs including ADHD and mental health conditions; and physical disabilities such as cerebral palsy, spina bifida, or muscular dystrophy.

Simply providing “health insurance” to children with these conditions is no guarantee that they’ll receive appropriate services. A 2002 study by Harriette Fox and others for HRSA reported that insurers have interpreted contract terms to exclude categorically some conditions such as mental retardation or “inorganic disorders.” Others have limited medically necessary services such as speech therapy or habilitation therapy because they are not curative or restorative, but merely needed to maximize a child’s ability to function.

These contract terms and their interpretations have not often been challenged by state departments of insurance, because those terms and interpretations have the power of custom and industry practice behind them. These customs and practices, however, can deny care that children desperately need to live socially integrated and healthy lives. Amy Davidoff and coauthors in 2004 examined the difference in children’s coverage experiences when covered by Medicaid on one hand, or by private plan-mimicking SCHIP on the other, with respect to denial of access to needed services, including medically necessary ancillary services. They reported that,

Medicaid-eligible children tend not to face these concerns, in part because Medicaid explicitly covers medically necessary services not covered by private insurers. To the extent states pattern their SCHIP programs on private insurance and not Medicaid, the children lose that benefit.

The Baucus bill adds to Medicaid’s strength in this regard. At Title II, Subtitle B of the Chairman’s Mark (after the acceptance of an amendment from Senator Debbie Stabenow), a new Medicaid state plan option will permit states to offer, for children with at least two chronic conditions or one serious and persistent mental health condition,

Comprehensive care management; care coordination and health promotion; comprehensive transitional care, including appropriate follow-up, from inpatient to other settings; patient and family support; and referral to community and social support services, if relevant…

What of families covered by the private competitive marketplace of health insurance or SCHIP? The bills speak in general terms of the power of federal and state regulators to ensure adequate and appropriate coverage. This enforcement power should be used to ensure that coverage applies to chronic and disabling conditions as it does to run-of-the-mill medical/surgical cases. Future posts will examine some of the specific enforcement language, which will be key to the realization of the promise of reform to CSHCNs and others with chronic and disabling conditions.

Universal Health Insurance for America’s Children - Can It Happen?

It is no secret that America’s health care infrastructure leaves much to be desired.  It spends more on health care than any other country in the world, but is far from achieving the best results.  The extreme cost of care has contributed to increased rates of the un- and underinsured — climbing from 41.2 and 15.6 million in 2003 to  49.6 and 25.2 million, respectively, in 2007.

Most observers agree that the American health care system is badly broken–if it ever was intact–as evidenced by the large number of Americans without health insurance, the high and rising costs of health care, and the relatively poor health outcomes achieved for the money spent.

What might be lesser known is the degree to which lack of health coverage affects children.  In their article, Universal Health Insurance for Children, published in the Journal of Health Care for the Poor and Underserved, Hughes et al. note that despite programs designed to enhance children’s access to coverage like State Children’s Health Insurance Program (SCHIP), about 8.1 million children were a part of the uninsured population in 2007.  Confusion about eligibility is often cited as a reason many children — over 80% of low income uninsured children - who are eligible for coverage do not have it.

Children’s health insurance status helps predict whether they receive needed health care and provides a critical means for identifying and addressing their health problems early in life… Children  who experience unmet health problems are more likely to miss school, to incur high costs for medical care, and to have parents miss work due to caring for an ill child.

Consequences of non-coverage of children start with compromised access to health care and turn into compromises to the American economy.

Lack of insurance coverage for children not only has an immediate impact on those whose access to care is limited, but it also has social implications in terms of potential public health threats due to untreated communicable diseases, higher health care costs for end-stage treatment, and consequences for the economy in terms of productivity and high insurance costs to businesses.

It has been well documented that providing health insurance coverage is cheaper than paying for the consequences associated with the alternative, but America has been resistant to providing universal coverage.  Providing coverage specifically for children, on the other hand, has been met with less resistance.

The social and individual benefit of extending preventive care and health insurance to children, however, is somewhat less contentious [than providing insurance to adults], largely because children are viewed more sympathetically than adults by health care leaders and the American public.

Hughes et al. argue for immediate universal coverage for children, rather than waiting for universal coverage for the country as a whole and note that it would have to occur at the federal, as opposed to state and local, levels.  They make two recommendations for achieving this goal.

One option is to create a Medicare-like federal program under which all children are automatically enrolled in a comprehensive insurance program, regardless of income. By and large, Medicare works well for seniors and is a reasonable model for children. Another option involves modifying Medicaid, SCHIP, and other categorical programs to create a uniform insurance program for low-income and undocumented children that eliminates the confusion and complexity associated with multiple programs. Both options would require sufficient minimization of paperwork and reimbursement to providers to ensure that coverage translates into genuine access to care.

Hughes et al. point out that most Americans support universal coverage, especially for children, despite the added tax burden it may cause.  This is probably a sentiment reflecting the reality of the extreme cost and gross inefficiency of the American health care system.  As children constitute a categorically vulnerable population which affords them the sympathy of the country, it makes sense to begin the road to universal health care in this country with them.  The vast majority of taxpayers are willing to foot the bill and we have an administration ripened to bring about such a change.  If ever there was the time to begin the process of providing universal health insurance to children in America, it would be now.

Bill Before Congress Would Extend Health Insurance to Children of Legal Immigrants Sooner

The New York Times reports that Congress will likely pass a bill to provide health insurance to millions of low-income children. Similar legislation was twice vetoed by President Bush in 2007.

Under the proposed legislation, states would have the option to restore health insurance benefits to legal immigrants under 21 as well as pregnant women. Currently, legal immigrants are barred from Medicaid and the State Children’s Health Insurance Program for the first five years after they enter the United States.

It is estimated that 400,000 to 600,000 immigrant children are affected by the restriction currently in place. The Times notes that:

Among children, legal immigrants are less likely to receive immunizations and routine dental care.

and

[A]mong women, legal immigrants are less likely to receive prenatal care.

Opponents of the bill argue that the original purpose of program-to serve the children of the working poor-has not been fulfilled, raising concerns about extending it to legal immigrants and others groups not originally contemplated.

Others argue that the expected costs of the bill would be too great. The program currently covers about 6.6 million children and costs the federal government $5 billion a year. The Times estimates that the passage of the bill could double the annual expense of the program. The expanded program proposed by the new bill would be financed by tobacco taxes.

President-elect Obama has already expressed his support for allowing states to offer health insurance to legal immigrant children before the five-year waiting period is met.

Generally, the bill is garnering significant support from various sectors. Many people feel that all children should have health insurance. There is great support for this proposition as well. By extending health insurance to more children including legal immigrants, not only will children in need of care be provided for, but by providing greater access to preventive care, states will reduce overall health care costs .