Child Health in the Community
The Magic of a Soccer Ball
The simple act of kicking a soccer ball—a pleasure most kids take for granted—can be a rare gift for a child with special needs. Ask Scott White, whose daughter, Lauren, has “just blossomed” in the four years she’s been involved with TOPSoccer, a nationwide program that gives disabled children the chance to play soccer at levels consistent with their skills. In Ann Arbor, where Lauren plays, the program serves more than 25 special-needs kids and their families.
White says TOPSoccer is both a welcome source of physical activity for his daughter, who has Williams syndrome, a genetic condition similar to Down’s syndrome, and an important social outlet. The Ann Arbor program offers 15 sessions a year, during which Lauren gets to work closely with college and high-school athletes and coaches to learn basic soccer skills. “She looks forward to seeing the other kids there, and to seeing the volunteers and coaches,” her dad says. “She’s gotten to know a lot of them on a first-name basis.”
A collaborative effort by UM, the Ann Arbor Public Schools, and Ann Arbor’s Rec & Ed program, TOPSoccer “is a model for how universities can work with communities,” says Siobán Harlow, a professor of epidemiology at SPH, who’s been a volunteer coordinator for the program for the past two years. “It’s a few people putting in a little bit of effort, and it makes a huge difference.” Harlow, whose sons both play soccer, sees her work with the program as part of her contribution to the university and “to the linkage between the university and the town.”
Steve Burns, head coach of the UM men’s soccer team and a driving force behind the program, notes that TOPSoccer benefits not only kids like Lauren but also the high-school and college athletes who volunteer for the project. “It’s easy for players to lose perspective,” Burns says. “A program like this reminds them of how their work resonates with the larger community.”
Your Blood, Your Kids’ Blood, and the Michigan BioTrust
Under Michigan’s Mandatory Newborn Screening Program, a blood sample is taken from every infant born in the state and tested for 49 genetic disorders. Completed test samples are stripped of identification and stored in a temperature-controlled facility managed by Wayne State University’s Biobanking Center of Excellence. Health officials estimate that in its 25 years of existence, the screening program has prevented disabilities and saved the lives of more than 4,000 Michigan babies.
Now the Michigan Department of Community Health (MDCH) is moving ahead with plans to make the leftover dried blood samples more readily available to scientists for medical and public health research through an initiative called the Michigan BioTrust for Health—an initiative that SPH epidemiologist Sharon Kardia says she is “cautiously” helping to develop.
Kardia, who directs the SPH Public Health Genetics Program and co-directs the UM Life Sciences and Society Program, says the BioTrust represents “a wonderful research resource. But I want to be sure it’s not used inappropriately. Right now, for example, it’s not clear what the limits on research will be, or whether there are strong enough safeguards to keep data from being turned over to the criminal justice system.”
To help ensure that the citizens of Michigan are fully aware “that their blood or their kids’ blood” is in the BioTrust, Kardia and her colleagues in the Life Sciences and Society Program have secured a challenge grant that’s enabling them to develop an informational website and hold town meetings in each of Michigan’s five geographic areas. They’re funneling information from both initiatives to MDCH and Michigan legislators.
Kardia notes that while every state in the country collects newborn blood samples, only Michigan is trying to make the residual samples widely available for research. The potential health benefits are enormous, but so are the potential “unintended consequences,” she says.
“I have enormous respect for the BioTrust initiative, but if it isn’t going to benefit and protect the citizens of Michigan, then we are in effect gambling with the public’s trust in the name of science,” Kardia says. “I want Michigan’s citizens to be informed, and I want the governance of the BioTrust to reflect the values of our communities—not just scientists and ethicists.”
The Resilience of Children
Kids aren’t the first thing most people think of when they hear the words “hospice care,” but in fact, says Ed Goldman, an adjunct faculty member in health management and policy at SPH, southeastern Michigan’s Arbor Hospice serves ten pediatric patients a day and provides grief counseling to more than 200 children a year.
Goldman, who serves on the organization’s governing board (together with board chair and SPH alumna Pat Warner, MPH ’77), calls hospice a vital part of the “whole continuum” of health care and says the key challenge of pediatric hospice care is figuring out “how best to help people come to grips with something that no one should have to come to grips with.” Whether it’s end-of-life care for a dying child or counseling for a grief-stricken sibling or parent, hospice workers and volunteers—including nurses, social workers, spiritual advisors, and grief counselors—must find the right approach for each family.
Time and again, Goldman’s work with Arbor Hospice has shown him how resilient human beings are—especially children, both those who are receiving care and those who are grieving for loved ones. “Kids are smarter than we give them credit for,” he says. “It’s amazing how they can cope with terrible tragedy, how interested they are in getting accurate information, and not saying, ‘I don’t want to know, don’t tell me.’ And how sophisticated they are at taking the information and understanding what it means.” More on Arbor Hospice