On a clear fall day in October of 2004, Bridget Lane took her new daughter Mary Alice to see her pediatrician. She was a fussy 7-week-old that did not want to grow. The reason for her lack of growth was quickly identified as an inability to digest and absorb the fat in her formula. This was just one complication of a disease called Cystic Fibrosis. Mary Alice’s parents are now experts in Cystic Fibrosis and the care of a child with a complex, chronic disease. This is because of their exceptional dedication to Mary Alice and a medical care delivery structure called “the Family Centered Medical Home.” This structure has been at the backbone of the care of children for over 40 years.
The American Academy of Pediatrics set the “Medical Home” as the standard of Pediatric care in 1992 with a formal policy statement:
The goal of pediatricians is that the medical care of infants, children and adolescents ideally should be accessible, continuous, comprehensive, family-centered, coordinated and compassionate. It should be delivered or directed by well-trained physicians who are able to manage or facilitate essentially all aspects of pediatric care. The physicians should be known to the child and family and should be able to develop a relationship of mutual responsibility and trust with them.
A Medical Home model of healthcare means that the pediatrician's office serves as the "hub" of a busy wheel of care. Most children need some specialized services over the course of their childhood, adolescent and young adult years. The “spokes” of this care wheel could be an Orthopedist for a broken arm, a Speech Therapist for a language problem or a Nutritionist for dietary causes of obesity. For children with chronic, complex diseases; there can be many spokes. The patient has the best chance of preventing or effectively managing their health challenges if the Medical Home serves as the hub, keeping all providers in good communication. A study published in the Journal of Maternal and Child Health in 2011 clearly showed reduced health care costs, more stable health and reduced Emergency Room visits for children with special health care needs who have a Medical Home.
Advances in medical technology have made it possible for doctors to cure or provide life-sustaining treatments to patients whose illnesses would have been lethal only a few decades ago. However, for many of these patients and their families, maintaining their best quality of life involves the care of many medical subspecialists, taking many medications, and using various therapy services and medical devices. Navigating this degree of medical support is overwhelming for most parents of medically complex children. Ideally, parents should be able to count on a team to support the coordinated care among the roster of medical subspecialists and services. This pediatric care team, known as the "Medical Home", synthesizes information coming in from subspecialists and other providers and ensures the parents' understanding of all ongoing issues. The Medical Home team spots opportunities for prevention, keeps problems simple before they get more serious, streamlines care, minimizes complications and eliminates unnecessary therapies.
Unfortunately, one out of every five children in the Tennessee Valley region does not have a primary care physician, let alone a “Medical Home.” These children, often, need this type of care coordination and family support the most. The 2007 National Survey of Children’s Health showed that as children get older in Tennessee the likelihood of a child being in a Medical Home decreases. The percent of children in a medical home from birth to preschool in our region is 67.1% and drops to 54.5% by 12-17 years. Another factor is family income. In families who make more than $94,000 per year, three out of four have a Medical Home. In contrast, only half of the children in families who make less than $24,000 per year have a Medical Home. Race also has an impact. Seven out of ten White children have a medical home while only five out of ten Hispanic and four out of ten Black children have a medical home.
Mike Lane, Mary Alice’s father says, “Being a parent of a child with a chronic illness, I understand the importance of exemplary healthcare. Fortunately we have access to this benefit and as a result, our daughter is flourishing.” The Lanes have had a Family Centered Medical Home to help navigate Mary Alice’s Pulmonologist, her Gastroenterologist, her Nutritional needs and her special medical equipment. The Lane’s have seen the goals of the Medical Home realized in their child. Mr. Lane continues, “Sadly, many children in our area are not as lucky. It is our responsibility, both financially and morally, to provide the availability of adequate healthcare to all children.”
The Pediatric Health Improvement Coalition of the Tennessee Valley (PHIC-TV) believes that the adequate healthcare for children is in a Family Centered Medical Home. PHIC-TV is an organization that is working to define why children in our region do not have Family Centered Medical Homes. This organization is dedicated to breaking down barriers to our children to this type of care. Please support the ongoing work of PHIC-TV by getting more information at healthychattanoogakids.blogspot.com or following on Twitter @PHIC_TV.
Alan Kohrt, MD, FAAP
Professor and Chair, Department of Pediatrics, UTCOM, Chattanooga
CEO, Children's Hospital at Erlanger
Kourtney Santucci, MD, FAAP
Hospitalist Physician, Children's Hospital at Erlanger
R. Allen Coffman, Jr., MD, FAAP
Pediatrician, Highland Pediatrics
President, Tennessee Chapter of the American Academy of Pediatrics