The Global Burden of Stillbirth

As a teenager in the late 1980s, I was a huge fan of the model Christy Turlington Burns.  As I’ve blogged about before, in 2011 there’s much more to admire about her than her enduring beauty.  Over the weekend, Turlington Burns and others representing her advocacy organization, Every Mother Counts, ran the ING New York City Marathon to, in her words, “make the vital connection for people that so many pregnant women live far from health services around the world and that distance does make a difference [in the prevention of maternal mortality]. Simply put, we want to run so that others don’t have to…”

Just as distance makes a difference in the prevention of maternal mortality, it also makes a difference in the prevention of stillbirth.[1] In the introduction to a special series of articles that ran in The Lancet in April of this year, Zoe Mullan and Richard Horton note that 98% of the estimated 2.64 million stillbirths each year, “occur in low-income and middle-income countries, and in places such as south Asia and sub-Saharan Africa, at least half of them take place during labour or birth.”  In addition to reducing maternal and newborn mortality rates, then, closing the literal and figurative distance between pregnant women and childbirth care would prevent many stillbirths from occurring.

In a pair of important articles - Stillbirths: What Difference Can We Make and At What Cost? and Stillbirths: How Can Health Systems Deliver for Mothers and Babies — The Lancet’s Stillbirths Series Steering Committee delves into the prevention question in detail.  The Steering Committee systematically assessed 35 potential interventions to determine (1) whether they were effective at reducing the stillbirth rate and (2) “whether they are affordable and implementable in low-income and middle-income countries.”   The following ten interventions passed the Committee’s test and were strongly recommended for implementation: “periconceptional folic acid fortification, insecticide-treated bednets or intermittent preventive treatment for malaria prevention, syphilis detection and treatment, detection and management of hypertensive disease of pregnancy, detection and management of diabetes of pregnancy, detection and management of fetal growth restriction, routine induction to prevent post-term pregnancies, skilled care at birth, basic emergency obstetric care, and comprehensive emergency obstetric care.”  Of these, the Committee recommended that skilled care at birth and emergency obstetric care take priority, both because they were the most effective at reducing the number of stillbirths and because they additionally benefit women and newborn babies.

The Stillbirths Series Committee estimated that “[i]n 68 countries accounting for 92% of the worldwide burden of stillbirths in 2008, universal coverage of care (99%) with intervention packages in 2015 could save up to 1.1 million (45%) third-trimester stillbirths, 201,000 (54%) maternal deaths, and 1.4 million (43%) neonatal deaths at an additional cost of US $2.32 per person, which is well below the WHO and World Bank criteria for cost-effectiveness.”  While it seems only fair to consider this “triple return for every dollar invested” in determining funding priorities, the tragedy of stillbirth does not always “count.”

The World Health Organization’s Global Burden of Disease analysis, for example, which aims to “provide[] a comprehensive and comparable assessment of mortality and loss of health due to diseases, injuries and risk factors for all regions of the world[,]” does not factor in stillbirths.  The WHO explains on its website that “[p]erinatal mortality, defined as number of stillbirths and deaths in the first week of life per 1,000 live births, is a useful additional indicator, and work is ongoing to improve estimates of stillbirth rates, a major component of perinatal mortality.”  The United Nations’ Millennium Development Goals similarly fail to include reducing the rate of stillbirths.  This should change.  In the words of Mullan and Horton in The Lancet, “stillbirths matter to people” and “stillbirth prevention should be placed as highly on global and national health agendas as prevention of maternal and neonatal deaths.”

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[1] I thank Catherine Finizio, the Administrator of Seton Hall Law’s Center for Health & Pharmaceutical Law & Policy, for keeping me focused on this important issue.  (My prior posts are here and here.)  Cathy’s grandson, Colin Joseph Mahoney, was stillborn at 39 weeks gestation on November 10, 2008.

Apples and Fries: The New Look of McDonald’s Happy Meals (Toys Still Included)

Responding to pressure from parents and consumer groups, McDonald’s announced on Tuesday its “Commitments to Offer Improved Nutrition Choices” and serve up more nutritionally-balanced meal options, particularly for children.  Starting in September, Happy Meals will have apple slices and a smaller serving of French Fries (1.1 ounces instead of 2.4 ounces).  The company stated that “[b]y adding fruit in every Happy Meal, McDonald’s hopes to address a challenge children face in meeting the recommended daily consumption of produce” and noted that “[f]or those customers who prefer a side choice of apples only, two bags of apple slices will be available, upon request.”   McDonald’s vice president Ben Stringfellow has said that the company is considering other fruit choices such as “pineapple spears, raisins and carrot sticks.”  Other planned  changes in the next year include a 10% sodium reduction in chicken products, new beverage options of fat-free chocolate milk and 1% low fat white milk (in addition to the traditional sodas),  and increased access to nutrition information through mobile apps for iPhone, iPad, Blackberry, and Android devices.

Once the nutritional changes take effect, a Happy Meal with chicken nuggets will shrink from 530 calories and 23 grams of fat to 435 calories and 17 grams of fat.  Samantha Graff, director of legal research at Public Health Law and Policy, told Prescriptions, The New York Times health blog, that “McDonald’s has taken an extremely important step to help parents who want to please their kids while providing them with at least minimally nutritious food. We think it’s a terrific move.”  In an opinion piece, Chris Woolston, a writer for Booster Shots, the Los Angeles Times health blog, wonders whether healthier McDonald’s meals are the answer as

[t]o reshape their kids’ diets, parents need to make more meals at home, where they can write the menus and control the ingredients and portion sizes. If more healthful Happy Meals translate into more trips to the golden arches — as McDonald’s obviously hopes — the end result may be something other than happiness.

Sure, for companies like McDonald’s, it’s about the bottom line.  For parents, it’s about the health of their children.  Good, responsible eating does start in the home… but why let it end there?

(Click on these links for two posts from Booster Shots on calorie labeling and the push among health experts for a public calorie database.)

Take Them Away: Has Severe Childhood Obesity Really Come to This?

As a follow up to my previous post on junk food marketing to children and my earlier post on MyPlate — and any other post that I’ve written about children and fast food or junk food — I would like to direct your attention to a commentary recently published in the Journal of the American Medical Association which has caused quite a stir.  In “State Intervention in Life-Threatening Childhood Obesity,” Dr. David Ludwig (Director of the Optimal Weight for Life Program at Children’s Hospital in Boston, Massachusetts) and lawyer Lindsey Murtagh (Research Associate for the Department of Health Policy and Management at Harvard School of Public Health) confront severe childhood obesity — which is “characterized by a body mass index (BMI) at or beyond the 99th percentile” — with what appears to be a wild and rash line of thought: remove severely obese children from their homes and place them into foster care.

In their commentary, Dr. Ludwig and Ms. Murtagh write that

[s]tate intervention may serve the best interests of many children with life-threatening obesity, comprising the only realistic way to control harmful behaviors. Child protective services typically provide intermediate options such as in-home social supports, parenting training, counseling, and financial assistance, that may address underlying problems without resorting to removal. These less burdensome forms of legal intervention may be sufficient and therefore preferable in many cases. In some instances, support services may be insufficient to prevent severe harm, leaving foster care or bariatric surgery as the only alternatives. Although removal of the child from the home can cause families great emotional pain, this option lacks the physical risks of bariatric surgery.

However, the authors also acknowledge that

removal from the home does not guarantee improved physical health, and substantial psychosocial morbidity may ensue. Thus, the decision to pursue this option must be guided by carefully defined criteria… with less intrusive methods used whenever possible.

Reading through the commentary, one senses an exasperated tone more than anything else.  After all, the authors cite a mind-numbing statistic: there are approximately 2 million severely obese children in the United States.  And how should we treat this epidemic?  With bariatric surgery you say?  And so the authors wonder aloud whether “removal from the home may be justifiable from a legal standpoint because of imminent health risks and the parents’ chronic failure to address medical problems.”

Let’s set aside the legal arguments for a minute and discuss the heart of the matter: America’s eating habits.  Specifically, America’s childrens’ eating habits.   In a response post on MSNBC, Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania, criticized Dr. Ludwig and Ms. Murtagh by focusing on other obesity-causing factors, such as the unhealthy “food culture,” that pervades the United States.  Professor Caplan wrote

I am not letting parents off the hook. But, putting the blame for childhood obesity on the home and then arguing that moving kids out of homes where obesity reigns is the answer is short-sighted and doomed to fail. We need the nation to go on a diet together and the most important places to start are at the grocery store, schools and media.

On Booster Shots, the Los Angeles Times health blog, Chris Woolston wrote that removing children from their homes and placing them into foster care will not fix poor eating habits because

[c]hildhood obesity is complicated. Fast food, sodas, TV, video games — many staples of modern life are pushing kids in the wrong direction. While researching a book on this topic a few years ago, I spoke with several moms who were tackling their child’s weight troubles with varying levels of success. One considered putting locks on her cabinets to keep her son from sneaking food in the middle of the night.

Her son was definitely on the large side — beyond that, really — but it’s not because his mom didn’t care. And even if someone had placed him in a foster home it wouldn’t have solved his problems. As a rule, those places have food in their cupboards, too.

Hear, hear.  Wake up, folks.  We need a food culture revolution with healthier and affordable alternatives.  One which teaches our children to choose healthy foods and to eat in moderation.  Because what else must we do before everyone finally, in the words of Professor Caplan, “[d]emonize[s] the companies that sell and market food that is not nutritious” and “[p]ut[s] exercise back on the menu for all school kids”?  Institute state programs that remove severely obese children from their homes and place them into foster care?  Oh, wait….

The Junk Food Marketing Debate: A First Amendment Right or Just Making Sure Kids Aren’t What They Eat?

Remember the Omnibus Appropriations Act of 2009 (H.R. 1105) that President Obama signed on March 11, 2009?   No?  Good, me neither, but my excuse is that I was busy applying to law schools.  If you and I had been paying closer/any (take your pick) attention, we would have seen that the Act included, among other things, a provision calling for the Federal Trade Commission, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Department of Agriculture to create an Interagency Working Group on Marketed Food to Children (”Working Group”) composed of representatives from each agency.  The Working Group would research and recommend standards for the marketing and advertising of food to children age 17 years and younger.   These recommendations would be presented to Congress down the road.

Well, a couple of years passed, but in April 2011 the Working Group released its 26-page “Preliminary Proposed Nutrition Principles to Guide Industry Self-Regulatory Efforts” for public comment (which you can submit by clicking here before July 14). The Working Group notes that

… in the FTC’s 2008 study on Marketing Food to Children and Adolescents, three food categories — breakfast cereal, restaurant foods, and snack foods — represented approximately 70% of food marketing expenditures directed to children under 12. Similarly, three categories of foods — carbonated beverages, restaurant foods, and non-carbonated beverages — represented 69% of the food marketing expenditures for adolescents ages 12-17 year….  [Overall] [t]he categories most heavily marketed to children and adolescents, ages 2 -17 years are: breakfast cereals; snack foods; candy; dairy products; baked goods; carbonated beverages; fruit juice and non-carbonated beverages; prepared foods and meals; frozen and chilled deserts; and restaurant foods. The Working Group is therefore recommending that the food industry focus its efforts on ensuring that any advertising or marketing of food products within these ten categories meet the nutrition principles set out below. (Emphasis added.)

The Working Group focuses on two nutritional principles “that both improve the nutritional quality of foods marketed to children and can be feasibly implemented by industry with sufficient time to accomplish reformulation,” namely, “Meaningful Contribution to a Healthful Diet” (Principle A)  and “Nutrients with Negative Impact on Health or Weight”  (Principle B).  Principle A ensures that foods marketed to children contain two or more of the following food groups: “fruit, vegetable, whole grain, fat-free or low-fat milk products, fish, extra lean meat or poultry, eggs, nuts and seeds, or beans.”  Principle B ensures that foods marketed to children have limited amounts of saturated fat, trans fat, sodium, and added sugars.  The Working Group makes sure to point out (several times in fact) that its recommendation are based on the 2010 Dietary Guidelines for Americans.

Really, this all sounds quite sensible, if not a little over-protective… but considering, as The Washington Post has reported, that Type 2 diabetes has significantly increased among people age 20 years and younger, what else can this country do to curb obesity and poor eating habits?  Even if we could reduce the cost of nutrient-rich and quality foods so that everyone could afford them, how do we neutralize the marketing of junk food to children?  In a report last month, NPR noted how

[the Working Group] broke from the past by seeking to include 12- to 17-year-olds in its guidelines. Traditionally, limits on marketing focused on the very young. But the government sought to expand them to older children, in part because they are heavy consumers of social media, cell phone messages and online games — the new frontier for ads.

That new frontier of advertising to children through online games — also known as “advergaming” (forgive my use of Wikipedia but Merriam-Webster doesn’t list the word) — includes Asylum 626 and Hotel 626, two advergames sponsored by Doritos.  As NPR reported,

“[w]hat we’re talking about are very complicated and very subtle forms of marketing that aren’t always clear as such,” says Kathryn Montgomery, a professor of communications at American University and an advocate for limiting food ads to teens.

[...]

Montgomery says such ads work subliminally and use friends to influence other friends.

But efforts to restrict ads to teens draw lots of opposition from the food and advertising industries. The industries say the overlap between teen and adult audiences makes the proposed restrictions impractical.

Critics, including the U.S. Chamber of Commerce, have questioned the constitutionality and logic of the Working Group’s nutritional proposals.  The Hill’s Healthwatch has reported that some critics see a First Amendment issue because

“[w]hat they’re doing is trying to simultaneously … suppress speech, while insulating it from judicial review,” said Northwestern law Professor Martin Redish, one of the panelists at a Chamber of Commerce discussion Thursday. “Because if these regulations were truly just advisory, there would be no case or controversy.”

[...]

“Industry’s rights are being violated here,” Redish said, “but there’s something deeper and darker that’s going on: The government is treating us like sheep.”

While constrained to commercial speech, Redish said that attitude has broader implications. People, he said, “can’t be sheep in the commercial realm and then all of a sudden, in the political realm, they’re free-thinking adults who can make basic choices.”

NPR has reported that other critics question the logic behind the proposal and the implicated age range.

Elaine Kolish directs an industry-funded program called the Children’s Food and Beverage Advertising Initiative. For the past five years this initiative sponsored its own voluntary standards that focus only on the 12-and-under set.

“You know, we let kids drive and we let them hold jobs when they’re 16. They can get married in some states, and they can join the military with permission, and they can be held criminally responsible for their actions in a number of situations,” she says. “So I think that the notion that you’d have to have nutrition standards that say you can’t let a kid see an ad for a french fry but you can let them join the military doesn’t really make a lot of sense.”

So where do we go from here?  Is industry self-regulation the answer to making products that better fit on MyPlate?  As I’ve noted in a previous post about McDonald’s Happy Meal toys, sometimes the answer can be stricter parenting (just say “no”).  Yet how can parents instill and maintain healthy eating habits in their kids when advertisements for unhealthy food bombard them through television, social media, and online games?

Cupcakes, Patty-Cake, and the Physician Shortage

In a recent New York Times op ed, anesthesiologist and mother of four Karen Sibert argues that physicians have a moral obligation to practice medicine full-time, an obligation that arises out of (1) the fixed (or even falling) number of slots in residency programs  and (2) the growing shortage of doctors, particularly primary care doctors.  It is fair, Dr. Sibert argues, to ask students who aspire to go to medical school “to consider the conflicting demands that medicine and parenthood make before they accept (and deny to others) sought-after positions in medical school and residency.”  “Women especially” should consider whether they are willing to fulfill the “real moral obligation to serve” that a medical education confers.  Those who cannot put aside their naïve “rosy vision of limited work hours and raising children” should choose another profession.

Unsurprisingly, Dr. Sibert’s salvo in what Michelle Au terms “The Mommy Wars, Medical Edition” swiftly inspired a vigorous and thought-provoking debate.  Dr. Au — like Dr. Sibert, an anesthesiologist and mother — calls Dr. Sibert’s “views sexist, inflammatory, and frankly discouraging” and argues that “medicine needs to catch up with the rest of society, and as such adopt some of the models other industries have created to recruit and retain the best and the brightest, regardless of gender.”  While conceding that part-time work is not possible during the “grueling training years,” Dr. Au notes that there are already “fields that present different structures to the workday and different practice models to recognize the full potential of modern physicians while also making the practice of medicine less inimical to family life.”  Others have taken Dr. Sibert’s side (see the letters and emails summarized here and here), with some making the additional argument that diagnostic acumen and surgical skill can decline with lack of use.

The relationship between the physician shortage and the increasing number of physicians who choose to work part-time may not be as straightforward as Dr. Sibert presumes. Several commentators have pointed out that an expectation that every physician practice medicine full-time for as long as he or she is physically able could actually exacerbate the physician shortage.  Carolyn Anderson, an ophthalmologist who works three long days per week, contends that discouraging part-time alternatives could deter entry into the field and make retention of older doctors more difficult.  Discouraging women from entering medicine could also backfire, because, although women physicians are more likely than men to work part-time, they are also more likely to go into primary care, and it is primary care physicians that are desperately needed.  More pointedly, it seems unfair (and likely ineffective) to try to solve a complex, multi-factorial, societal problem by asking individual young women — at the outset of their careers, typically before they have had children — to make morally-binding choices about balancing their work with parenthood.

Lastly, it would be easier for physicians and others to hear and understand Dr. Sibert’s arguments if her penultimate paragraph did not include the condescending concession that she “never took cupcakes to my children’s homerooms or drove carpool[.]“  Dr. Megan Duffy, who wrote into the Times in response to Dr. Sibert’s op ed, was similarly dismissive of the work of parenting, noting that she could not fathom putting her “lucrative career on the shelf to play patty-cake.”  It should not be necessary to diminish what parents who work part-time do in their “free” time to make the case that, when it comes to their careers, “women especially” should lean in, not back.

Mother’s Day Maternal Health Update

Inspired to act to reduce maternal mortality after she survived a postpartum hemorrhage, renaissance woman Christy Turlington has been making the rounds promoting her documentary No Woman No Cry, which tells the stories of at-risk pregnant women in Bangladesh, Guatemala, Tanzania, and the United States.  If you have been in a Starbucks lately you may have seen the compilation compact disc of the same name, the proceeds of which support the advocacy organization Turlington founded, Every Mother Counts.  As Turlington writes, “almost all of the hundreds of thousands of maternal deaths that occur each year are preventable. Yes, 90 percent!”

While the developing world bears the brunt of the global burden of maternal mortality and morbidity, the United States is not immune.  Women in 49 other countries have a better chance of surviving childbirth.  Passage of the Maternal Health Accountability Act of 2011, which was introduced by Representative John Conyers (D-MI) on March 3, 2011 and is currently pending in the House Committee on Energy and Commerce’s Subcommittee on Health, would be an important step towards redressing the problem of maternal mortality and morbidity here at home.

Among other things, the Act would provide funds to states to improve the reporting and tracking of pregnancy-related deaths.  In a recently-released report, the Council of State and Territorial Epidemiologists noted that maternal & child health “is the one program area in which overall state-level epidemiology and surveillance capacity increased progressively from 2004 to 2009, bucking the trend of an overall decrease in state-level epidemiology capacity.”  On the other hand, “the MCH epidemiology capacity glass is only half full: nearly half of all states lack even substantial MCH epidemiology and surveillance capacity, and in only a minority of jurisdictions do MCH epidemiologists participate substantially in policy development; have access to important data sets; and work with colleagues in substance abuse, mental health, and occupational health.”

The Maternal Health Accountability Act would also direct the National Institutes of Health to “organize a national workshop to identify definitions for severe maternal morbidity and make recommendations for a research plan to identify and monitor such morbidity in the United States.”  As the Act’s findings section explains, “[s]evere complications that result in women nearly dying, known as a ‘near miss’ or severe morbidity, according to some estimates, increased by 25 percent between 1998 and 2005, to approximately 34,000 cases a year. However, there is no scientific consensus on uniform definitions of severe maternal morbidity and best practices for data collection, making it difficult to measure the full extent of severe morbidity and developing evidence-based interventions.”  Finally, the Act would direct the Secretary of Health and Human Services to conduct research and establish demonstration projects targeting the stark geographic, racial, and socioeconomic disparities in maternal health outcomes.  According to Amnesty International’s Spring 2011 Deadly Delivery report, “[n]ew government data shows that for 2005-2007, the maternal mortality ratio (deaths per 100,000 live births) was highest among non-Hispanic black women (34.0), followed by American Indian/Alaska Native women (16.9), Asian/Pacific Islanders (11.0), non-Hispanic whites (10.4), and Hispanics (9.6).”

Importantly, tackling the problem of maternal mortality and morbidity need not wait until Congress acts.  In an article in the April issue of the American Journal of Obstetrics & Gynecology, Hospital Corporation of America, a chain of 114 inpatient facilities that claims to be the “largest obstetrical health care delivery system in the United States,” reported on its highly-successful obstetric patient safety program.  Among other things, HCA expanded the number of free, online programs it offers on topics such as fetal heart rate monitoring, postpartum hemorrhage, and shoulder dystocia, with the goal of educating providers and ensuring that they use “common terminology and thus avoid potentially hazardous miscommunication.”  In addition, HCA engaged in process standardization efforts including the development of checklist-based protocols and supported the development of national quality metrics to facilitate benchmarking.  HCA has been effective at reducing elective delivery before 39 weeks gestation and it “instituted a policy of universal perioperative pneumatic compression device use in all patients undergoing cesarean delivery.”  (I discussed the latter intervention here.)  HCA reports that its efforts have paid off, not just in outstanding perinatal outcomes, but also in reductions in litigation, as reflected by reported claims.  In 2009, the company’s losses due to “accidents on hospital grounds” exceeded its losses due to maternal mortality and morbidity.  Even more impressive, its “perinatal loss (in dollars) … is rapidly approaching the level of loss seen in the category ‘occupational therapy.’”

HCA opines “that adoption of our approach on a national level could, within 5 years, both dramatically reduce adverse perinatal outcomes and to a large extent eliminate the current national obstetric malpractice crisis.  In reality, a relatively small number of repeated errors lead to most preventable adverse outcomes, and may be reduced by the approaches outlined above.”  The company is not optimistic that its approach will be widely adopted, however, because it believes that efforts to improve perinatal outcomes have been hindered by “an alternative culture in which physician autonomy and anecdotal experience trump available data and the recommendations of the Institute of Medicine, contributing to a ‘normalization of deviance’ at odds with a safety-based culture.”  I wonder how physicians would respond to this interesting and provocative claim.  Might they argue that hospital policies and practices are at least in part to blame for our stalled efforts to reduce maternal mortality and morbidity?

Childhood Obesity: A Problem Worth Solving

[Ed note: We are pleased to welcome Regina Ram to Health Reform Watch. Regina is finishing her first year as a law student at Seton Hall. She graduated from Drexel University with a B.S. in Biological Sciences and minors in Psychology and Anthropology. She completed a Masters in Public Health from Boston University in 2010 with a focus on Health Law, Bioethics and Human Rights. As a graduate student, Regina worked as a legislative advocate for Dana-Farber Cancer Institute and also supported a SAMHSA funded research program to integrate substance abuse treatment into primary care settings. As an undergraduate, she worked as a healthcare writer and authored emerging technology evidence reports on health devices and procedures.]

Just recently, the New York Times published an article describing the attempt of parents in Philadelphia to change the poor eating habits of the city’s children. A concerned group of parents in a North Philadelphia neighborhood takes turns standing outside of corner stores near a K-8 school in the mornings. They don safety vests and walkie-talkies, and their goal is to discourage kids from stopping at corner stores to buy snacks like soda and candy before school. The article likens the parents to foot soldiers fighting in a national battle over the diets of children.

As dramatic as that may sound, statistics from the Centers for Disease Control and Prevention (CDC) support the metaphor. Nationwide, obesity rates have more than tripled over the past 30 years in both children and adolescents. Long-term consequences include higher risk for heart disease, type 2 diabetes, stroke, several types of cancer, and osteoarthritis in adulthood. More immediate effects include social and psychological problems like stigmatization and poor self-esteem. Further, caring for these health conditions has significant economic effects on the U.S. health care system. All of these statistics portray a battle well worth waging.

But is a group of parents patrolling a convenience store at 8:00 A.M. going to stop childhood obesity? Probably not. Even if the program dissuades kids from buying morning snacks, that behavior is unlikely to continue once parents are gone. Is it a step in the right direction? Certainly. The Surgeon General’s report on overweight and obesity notes that “families and communities lie at the foundation of the solution to the problem.”

However, any successful solution to decrease childhood obesity rates has to involve parents and communities as components of more comprehensive interventions. The causes of obesity in children are multi-factorial, ranging from diet and exercise to genetic and social factors including socioeconomic status and the built environment. The wide array of contributing factors points to the need for an interplay between public and private action to address childhood obesity.

Outside of the home, schools are a key setting for public health efforts to reduce childhood obesity rates. In particular, the National School Lunch Program can be an effective tool in improving the diets of school-age children. Just this year, the U.S. Department of Agriculture announced recommendations to overhaul the nutrition criteria of food programs for the first time in 15 years. The recommendations include limiting salt intake and the use of starchy vegetables, offering only reduced fat milk and using whole grains. Introducing children to healthier foods can help them understand what to eat and why, and that goes much further towards changing future patterns of behavior.

External factors like marketing and advertising also weigh on children’s decisions to eat certain foods. Recent litigation cases (one noted by Jennifer Jascoll here on the HRW website) have focused on the effectiveness of this advertising on children, as well as the disproportionate impact of such advertising on children of lower socioeconomic status. A New York City Councilman recently proposed a bill to ban fast food toys for meals over 500 calories. Children are generally more vulnerable to social messages, and restricting marketing is a case where benefits clearly outweigh the costs.

While involved parents and communities like the one in Philadelphia are undoubtedly an asset, it is going to take a more orchestrated effort to decrease rates of childhood obesity. Parents need to be empowered to make healthy choices and encourage healthier lifestyles for their children. At the same time, schools need to be working hand in hand with the community to ensure that the messages given at school correspond with the messages children hear outside. However unwieldy the issue seems, any action is to be applauded as preferable to no action at all.

(Note: for a more in-depth discussion of the economic consequences of obesity, see Michael Ricciardelli’s article here on HRW)

Hastings Center Releases Special Report on Psychiatric Illness in Children

Earlier this month, The Hastings Center released a special report “Troubled Children: Diagnosing, Treating, and Attending to Context” that is well-worth reading.  Co-authored by Erik Parens and Josephine Johnston, the report carefully and thoroughly addresses the “intense debates” about the increasing number of children in the United States who receive psychiatric diagnoses and psychotropic medications.

The first section of “Troubled Children” discusses the complexities involved in both defining psychiatric disorders and matching individual children to diagnostic categories; the second section discusses available treatments and the evidence base that supports their use.  The third and final section of the report, in which the authors suggest reasons “why many children do not receive careful diagnoses, why evidence-based treatments are often not available, and why promising changes to children’s environments are not made,” is the most directly relevant to students and teachers of health law.

Among the reasons discussed are the “imbalance between investments in the development of new pharmacological compared with psychosocial treatments,” that physician visits are brief and often “less frequent than is necessary for optimal treatment management,” that insurance “coverage for psychosocial treatments is often more limited than for medication treatments,” and that “the system is fragmented among primary care physicians, hospitals, and various other mental health providers, with little cross-communication or coordination following referrals and limited interaction with other systems that care for children, including child protective services, juvenile justice, and schools.” Expanding on the fragmentation concern, the authors tell an all-too-familiar story, explaining that “payers are not willing to reimburse professionals for consulting with one another or developing systems that streamline communication and coordinate care. … This leaves families who are committed to psychosocial treatments to identify, access, and navigate them alone.”

In addition to its central text, which is neutral and scholarly in tone, “Troubled Children” includes ten “sidebars,” each written by a different author with an overt advocacy position.  One sidebar raises the possibility of “overmedicalization,” a negative consequence of which is that “everything becomes pathologized, turning all human difference into medical problems.”  The author of another sidebar objects that “[t]he theory of ‘medicalization’ … makes parents into scapegoats instead of grasping the real problem.”  This author notes that she “can’t imagine anyone seriously discussing the role that ‘values’ play in diagnosing cancer or suggesting that medications that shrink cancers are just tools to force people who are different to be like everyone else.”

A third sidebar discusses the correlation between adverse childhood experiences–such as parental mental illness, substance abuse, or criminality, family violence, physical abuse, sexual abuse, and neglect–and adult mental health and function and suggests that “the question whether medications are overused can actually distract us from the other important question: how do we alleviate stress in families?”  (Also recommended, this fascinating article from this week’s issue of The New Yorker profiling a pediatrician in San Francisco who hopes to use insights about the relationship between poverty, child development, and health to transform the treatment of survivors of childhood trauma.)  The authors of “Troubled Children” make reference to the “other important question” in the conclusion to their report.  They write that “[o]ur ethical obligations to children require that we–including policy-makers, educators, medical professionals, and parents–remember that in addition to changing children (by pharmacological or psychosocial means), we have the power to change the contexts in which children are embedded, which can be key to lasting improvements in their mental health.”

This Film is Rated “R” for… Smoking?

Earlier this month, the Wall Street Journal Health Blog reported on several anti-smoking groups waging a campaign against Rango, a Paramount Pictures animation about animal characters in a Wild West town.  In one scene, a character swallows a cigar and burps fire into the face of another character.  Seemingly harmless fun in the world of animation, right?  Well, not everyone thinks so… and the burping fire and possible physical scarring isn’t the issue here.

Smoke Free Movies, the American Legacy Foundation, the Campaign for Tobacco-Free Kids, and the American Academy for Pediatrics have rallied against the portrayal of smoking in Rango and other films marketed to children.  (SceneSmoking provides a tally of the number of “smoking incidents” - over 50 - in Rango.)  The groups maintain that exposing children to smoking on the silver screen leads to smoking in real life; thus, such films should have an R-rating.  Rango is rated PG “for rude humor, language, action, and smoking.”

In response to the release of Rango, Cheryl Healton, CEO of the American Legacy Foundation, stated that

[t]he public health community has made great progress in making every studio aware of the harm to America’s youth when they release films with smoking and animated films are no exception….  Even the cartoon Joe Camel has long been barred from reaching children to sell cigarettes. So it is a mystery why Hollywood’s masters of storytelling and visual effects have not found a better way to depict their characters without the danger of influencing young people to light up.

Similarly, Smoke Free Movies took out a one-page advert in Variety and The Hollywood Reporter criticizing Paramount Pictures and the film industry for the depiction of tobacco use in Oscar-nominated films and citing National Cancer Institute research connecting silver screen exposure to an increased likelihood of real-life smoking.  Stanton Glantz, director of the Center for Tobacco Control Research and Education at the University of California-San Francisco (and head of Smoke Free Movies), said “[a] lot of kids are going to start smoking because of this movie.”  On the other side, Virginia Lam, a Paramount Pictures spokeswoman, replied that “[t]he images of smoking in the film, which primarily involves the animals, are portrayed by supporting characters and are not intended to be celebrated or emulated. Rango [the title character] is never depicted as smoking.”

So are these anti-smoking groups overreacting or must the Motion Picture Association of America (MPAA) reevaluate its ratings system?  In August 2010, the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report printed some research that found “[e]xposure to onscreen smoking in movies increases the probability that youths will start smoking.  Youths who are heavily exposed to onscreen smoking are approximately two to three times more likely to begin smoking than youths who are lightly exposed.”  (Note Prof. Glantz contributed to that report.)  USAToday has reported that “[o]f more than 2,500 movies rated from May 2007 to May 2010, nearly three-fourths of those that depicted smoking were rated R, and instances of smoking in films not rated R have declined” though this is not enough for the anti-smoking groups.

So what is the difference between a PG-rated film and an R-rated film?  According to the MPAA, a PG-rated film requires

investigat[ion] by parents before they let their younger children attend.  The PG rating indicates… that parents may consider some material unsuitable for their children, and parents should make that decision.  The more mature themes in some PG-rated motion pictures may call for parental guidance.  There may be some profanity and some depictions of violence or brief nudity.  But these elements are not deemed so intense as to require that parents be strongly cautioned beyond the suggestion of parental guidance.  There is no drug use content in a PG-rated motion picture.

(Emphasis added.)  On the other hand, an R-rated film will

contain some adult material.  An R-rated motion picture may include adult themes, adult activity, hard language, intense or persistent violence, sexually-oriented nudity, drug abuse or other elements, so that parents are counseled to take this rating very seriously.  Children under 17 are not allowed to attend R-rated motion pictures unaccompanied by a parent or adult guardian. Parents are strongly urged to find out more about R-rated motion pictures in determining their suitability for their children.  Generally, it is not appropriate for parents to bring their young children with them to R-rated motion pictures.

(Emphasis added.)  Elizabeth Kaltman, a spokeswoman for the MPAA, told TheWrap that

underage smoking has always factored into movie ratings, but as of May 2007, all smoking is included as a ratings factor, along with language, nudity and other adult content. Kaltman adds that movies depicting smoking in a fantastical rather than realistic manner are more likely to receive slack on the ratings front.

As for Smoke Free Movies’ suggestion that smoking and the PG rating don’t mix? Kaltman notes that the purpose of the ratings system is to provide parents with information, not to service activists.

People younger than 18 years can’t buy cigarettes.  Tobacco companies should not target children and teenagers.  Should the same rules apply to tobacco use in films?  How much responsibility should be imposed on the MPAA (whose rating system has been called into question by This Film Is Not Yet Rated and others) and how much responsibility should rest with parents who can choose not to take their children to a film with smoking in it?  What about re-runs of television shows from the 1950s, 1960s and 1970s which show people smoking?  Should Popeye, Maxwell Smart, and Lieutenant Columbo lose their pipe, cigarette, and cigar?  As a kid, I saw re-runs of shows with these characters and I didn’t become a smoker.  Should such shows be banned from television all-together so children aren’t exposed to smoking or only aired after 9pm to limit the chance of exposure?  Where and when do we draw the line?

The Pediatric Accountable Care Organization: Incentivizing a Family-Centered Approach

Late last year, the American Academy of Pediatrics (AAP) issued a report recommending that pediatricians screen new mothers for postpartum depression during the 1-, 2-, 4-, and 6-month well baby visits.  Most pediatricians believe that screening for postpartum depression is within the scope of pediatric practice, because “[a]ddressing maternal depression in a timely and proactive fashion is essential to ensure healthy early brain and child development and readiness to succeed.”

There has been some debate about whether such screening is reimbursable.  The AAP believes that it is (or should be) and recommends that pediatricians seek reimbursement using “[t]he Current Procedural Terminology (CPT) code 99420 [for "Administration and interpretation of a health risk assessment instrument"] … recognizing the [Edinburgh Postpartum Depression Scale (a 10-question screen completed by the mother)] as a measure for risk in the infant’s environment, to be appropriately billed at the infant’s visit.”

Because it would be integrated into a reimbursable well visit, and because of the limited amount of time it takes, reimbursement concerns may not be an insurmountable barrier to postpartum depression screening.  (Even more streamlined than the Edinburgh Scale is a two-question screening tool that, while not specifically designed for use with new mothers, has proved effective at identifying postpartum depression.  The two questions are as follows: “Over the past 2 weeks: 1. Have you ever felt down, depressed, or hopeless? 2. Have you felt little interest or pleasure in doing things?”  Answering yes to one or both of these questions is a positive screening result.)

When the screening identifies a potential problem, though, reimbursement concerns likely are a formidable barrier to treatment delivery.  The AAP acknowledges that pediatricians are not qualified to treat postpartum depression (and many mothers might not want them to in any event) and recommends that pediatricians refer new mothers with positive screening results to qualified providers and other resources in their community.  This recommendation is a good one, as far as it goes, and probably all that can be expected in our current fragmented healthcare system, but it is a long way from ideal, whether you put yourself in the shoes of the provider– or the family.

Might the much-talked-about accountable care organization be a means to the end of fairly compensating pediatricians and their staff for the hard work entailed in quickly and seamlessly moving mothers into care?  Just as Section 3022 of the Patient Protection and Affordable Care Act allows adult medical providers to form ACOs for the purpose of receiving incentive payments tied to savings to Medicare, under Section 2706 states can allow pediatric medical providers to form ACOs to receive payments tied to savings to Medicaid.  While the AAP claims that “[g]reater savings are found in managing care for adults and not children[,]“ Nationwide Children’s Hospital in Columbus, Ohio, the “largest pediatric accountable care organization in America,” disagrees, claiming that “[p]ediatrics offers perhaps the biggest opportunity to bend the long-term cost curve in health care.  While the savings may be less immediate, there is evidence that many of the pervasive, and costly, chronic diseases of adulthood can be successfully prevented in childhood, for example obesity.”

Providers establishing pediatric ACOs will need to confront a number of pediatric-specific structural issues.  As Mark Waxman and Larry Vernaglia point out in a recent Health Law Reporter article, while “children grow out of childhood and, therefore, potentially the [pediatric ACO] structure[,]” many conditions are “best treated by the same team over the life of the individual.”  In addition, “pediatric populations do not exist in vacuums; generally, they live in families and these families also receive medical care.  A [pediatric ACO] may need to coordinate closely with an ACO that provides care to the entire family.  … For example, if wellness programs were targeted at the whole family (e.g. nutrition, exercise, environmental, etc.) they likely would be more effective than if they address the child in isolation.”  Postpartum depression is just one of many conditions that call for care coordination not just on the patient’s behalf but also on the patient’s family’s behalf– and pediatric ACOs should be structured with this in mind.

Stillbirth: A “Largely Unstudied” Problem

While the ubiquitous pink ribbons (and pink everything else) ensure that everyone knows that October is Breast Cancer Awareness Month, less well known is that it is also Pregnancy and Infant Loss Awareness Month[1], proclaimed so by President Ronald Reagan in 1988.  As I wrote last October, about 1 in every 160 deliveries in this country ends in a stillbirth, and all too frequently no one can say why.  Stillbirth is a “largely unstudied …  problem in obstetrics.”

Encouragingly, the work of the physicians and scientists participating in the National Institute of Health’s Stillbirth Collaborative Research Network (SCRN) is beginning to bear fruit.  The August 2010 issue of the journal Obstetrics & Gynecology included an important article in which the SCRN investigators presented their “standardized method to assign probable and possible causes of death of stillbirths based on information routinely collected during prenatal care and the clinical evaluation of fetal death.”  Rigorously defining and more accurately determining causes of fetal death will both facilitate research and have useful clinical implications.  As the authors note, “[a]ccurately assigning a cause of fetal death is critically important for counseling grieving families.”

There will be much more to come from the SCRN, which has completed data collection on three distinct studies conducted between March 2006 and December 2009.  The first is a surveillance study designed “to assess the completeness of two reports of stillbirths: hospital labor and delivery logs and state vital statistics records. The data from the two sources will be linked statistically to determine incidence of stillbirth, the extent of under- or over-reporting, and factors associated with reporting.”  The second study entails a complete evaluation of 500 women and their 512 stillborn babies; the study also includes a control group of 1,932 women with live births.  The goal of this study was to develop and apply the method for determining cause of fetal death discussed above, with the ultimate goal of “determin[ing] maternal and fetal risk factors associated with increased risk of stillbirth.”  Finally, the SCRN conducted a follow-up study of the participants in the second study who experienced stillbirths, “to determine how many of the women have had subsequent pregnancies and subsequent pregnancy complications; how well women with a loss have resolved their grief and whether grief resolution is associated with the course and care of the pregnancy; and whether life-course stresses and environmental factors are associated with an increased risk of stillbirth.”

Research of the sort conducted by the SCRN is expensive and time consuming.  The SCRN investigators collected and are now analyzing 130,000 forms containing information provided by study participants and 120,000 maternal, fetal, and placental samples.  Stillbirth is an important public health problem but one that private sector actors lack the incentive or wherewithal or both to tackle.  Government support for research into what causes it and what can be done to prevent it is crucial — something for advocates to bear in mind as the struggle unfolds over funding for the National Institutes of Health for Fiscal Year 2011.

Photo Credit: I Should Be Doing Laundry via Flickr.

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[1] I thank Catherine Finizio, the Administrator of Seton Hall Law’s Center for Health & Pharmaceutical Law & Policy, for keeping me focused on this important issue.  Cathy’s first and only grandson, Colin Joseph Mahoney, was stillborn at 39 weeks gestation on November 10, 2008.

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.

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.)

Serving Urban Students With Autism: Newark, New Jersey

[Ed. note: We are pleased to welcome to the blog Michael Poreda, a 3^rd year student here at Seton Hall Law and the  Executive Director of its Urban Education Law and Policy Initiative (UELPI)--a student organization formed to promote awareness of, dialogue about, and activism benefiting urban education.  On April 5, 2010, UELPI will be convening a panel to discuss the challenges of administering special services to students with autism in urban communities.]

I recently sat down with Leslie Long and Michele Adubato of Newark’s North Ward Center to discuss the issue of autism services in Newark.  Founded in 1970, the North Ward Center is a non-profit community development organization that delivers social services to low-income families in Newark and Essex County through five institutions.  In 2011, the Autism Center will become the sixth institution.  The Autism Center will be headed by Michele Adubato, a former special education teacher and school administrator who has worked with children with autism for many years.   Leslie Long comes from a background of public policy.  She has directed programs for people with developmental disabilities throughout New Jersey.

I went to speak with Adubato and Long after finding that New Jersey has the highest autism rates in the country, yet the reported rates of autism in Essex County are lower than in surrounding communities and lower than the state average.[1] I wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.

Adubato is disturbed by the Newark school system’s proclivity not to diagnose children with autism because of a policy against stigmatization.  Adubato says the key with autism is early intervention.  The stigma-avoiding “wait-and-see” approach that the Newark school system often takes with children exhibiting autism-like behaviors avoids early intervention.

The problems facing children with autism in Newark are many.  At basic level, many parents are simply unaware of the symptoms of autism, the services available, the prognoses, or their rights.  Even when a parent is concerned about a child’s development, the parent may find the public schools resist diagnosis and the entitlement to special services that comes with the diagnosis.  Furthermore, in Adubato’s experience, the schools in Newark are not delivering the same caliber of services that are delivered in some suburban schools.  Even if a parent does get a diagnosis and some services, parents are unaware of their legal rights concerning the schools system’s proposed special education plan for the disabled student.  It is common for schools to select achievement goals for students with autism that do not actually address the most pressing issues of self-expression.  Parents are often unaware that they have a right to refuse the school’s proposed Individualized Education Plan (IEP) and to demand what they deem an appropriate IEP.

The transition into adulthood poses another major legal problem for students with autism.  Special services are only available through the school system up to age twenty-one.  Afterwards, the state administers services to people with autism through the Department of Developmental Disabilities (DDD).  Getting an approval for services can be downright treacherous.  Ms. Adubato related one frustrating story of a grandmother who was told that her autistic grandson needed to write his own application for special services.  DDD then used the grandson’s ability to write an application for special services as evidence that he wasn’t entitled to special services.

When it is inaugurated, the Autism Center will become a “one stop shop” for people with autism.  It will be a charter school for children with autism and provide parents with legal guidance for navigating the confusing bureaucratic world of special services.

On April 5, 2010 at 4pm, UELPI will host “Serving Urban Students With Autism: Newark, New Jersey,” a panel discussion at Seton Hall University School of Law.  We plan to bring together an educator, a parent, a lawmaker, a lawyer, and a member of an urban board of education to discuss the challenges of delivering services to students with autism in urban communities.  Kim Williams will share the challenges she faced as the parent of a student (now an adult) with autism who passed through the Newark public schools.  Michele Adubato will discuss why she left Newark schools after years of service there to found a special autism charter school.  Assemblywoman Grace Spencer will comment on the state’s recent efforts to help people with autism, and Attorney Paul Prior will share his perspective on the legal issues facing students with autism.  Suzanne Mack, a long-time member of the Jersey City Board of Education and the parent of an autistic child, will discuss her perspectives on building a large urban autism program.  The panel is tailored to meet the interests of a diverse audience: students, educators, parents, and lawyers all stand to gain important insights from this dialogue.

Be heard. All are welcome to attend, free of charge; reception to follow. Seton Hall Law University School of Law, One Newark Center, Newark, NJ 07102. RSVP at Urbaneducationandpolicy@gmail.com

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[1] In 2007-2008, New Jersey’s average rate of enrollment of students with autism of 2.29 per 1000.  Essex County’s rate was 2.0 per 1000.  See Nancy Scotto Rosato  & Sandra Howard, Reporting of Autism in the New Jersey Special Child Health Registry Prior to the Implementation of the 2007 Mandatory Reporting Law, available at http://www.state.nj.us/health/fhs/eis/documents/report_on_autism.pdf.

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