My family has been fortunate in many ways. With great health insurance, we selected a pediatrician several months before our son was born. For almost eighteen years we have benefited from having the same pediatrician. He is knowledgeable, accessible, friendly, convenient, and well-connected to the specialist community in the Baltimore-Washington area. He is comfortable referring us to needed specialists and is motivated to integrate specialist knowledge into my son’s overall interventions.
CHADD endorses the concept and experience of a “medical home” (clinical home/healthcare home) for children with special healthcare needs as defined, implemented, and advocated over the past decade by the American Academy of Pediatrics. As defined by AAP, medical homes are about a single medical practice taking ownership/responsibility to coordinate interventions for children with special needs, whether those children have either complex needs or a variety of needs.
The essential elements of a medical home for children with special healthcare needs are:
• Personal physician in a culturally and linguistically competent physician-directed medical practice who provides continuous and comprehensive care
• A focus on the “whole” child, youth, and family with coordinated care/services/supports
• A family-driven partnership that ensures a coordinated network of community-based services where both physicians and families share accountability for quality improvement through a performance measurement system
• A focus on transitions to ensure no disruptions of services as children and youth progress through normal stages of growth and development
• Privacy-protected, family-driven electronic medical records for communication with youth and families, and consultation between treating professionals.
My son has had numerous health and developmental/learning challenges over his lifetime. What I want to see happen is every child in America having access to a pediatric practice that meets the essential elements of a medical home as defined above. This is also a “hot” topic in Washington’s debate over healthcare reform. A topic for another day is all the issues and challenges with this model. I am very actively involved in these medical home public policy debates. CHADD also supports the Putting Patients First campaign of the National Health Council, an effort to promote care coordination through electronic medical records.
I have recounted to CHADD audiences many times my son’s challenges and our frustration, even with a great pediatrician, in coordinating and integrating professional information in helping my son. I asked a CHADD-Pennsylvania volunteer leader, Kirsten Leonard of West Chester, to share her experiences in accessing, coordinating, and integrating professional help for our children. Both our families have seen a variety of professionals over time. Both our families benefitted from participating in early intervention programs. One thing Kirsten and my wife Beth have in common is that despite access to great professionals, they are the care coordinators. Their families are fortunate that Kirsten and Beth have the time, ability, knowledge, and resources to so coordinate. Think of all the parents in our society who don’t have the time, ability, knowledge, or resources to coordinate professional services for their family members. The medical home model is designed to make such information sharing and coordination less burdensome on the family and more a medical practice responsibility.
I asked Kirsten some questions about coordinating interventions and moving toward a medical home model.
Did your child have needs for services and interventions beyond a single medical professional?
Yes, although the qualifier here is what is considered “medical.” Our son was born with very low tone and increased deep tendon reflexes. He also suffered from extreme gastroesophageal reflux. He qualified for the North Los Angeles Regional Center as an at-risk infant. The Regional Center is a private, nonprofit organization providing services and supports to persons with developmental disabilities and their families. The Regional Center provided our son with physical therapy to increase his tone. When he was eighteen months old we decided to put him in an Early Start program through the Santa Clarita Valley SELPA. Until he was three years old this program coordinated all of his services which included physical therapy, occupational therapy, speech therapy, behavioral therapy, and counseling. While they were happy to speak to all of our son’s medical doctors, they did not really coordinate services his medical services.
Which other professionals attempted to meet your son’s needs?
We also worked very closely with his gastroenterologist, allergist, and pediatrician. Most of his “medical” intervention was coordinated by me. Sometimes we used the services of a neurologist and a developmental pediatrician. Our family also sought the counsel of a psychologist who was trained to help families of children with special needs.
What role did the primary medical practice engage in to coordinate these interventions?
As a mom, what obstacles, challenges, and frustrations did you face in getting services coordinated (even integrated)?
I believe that we were luckier than many families. The Early Intervention program our son was in was awesome. They were our point people for all of his needs with the exception of his medical services. I served as his case manager with all of his doctors, which was somewhat frustrating. In my opinion, the biggest obstacle to overcome was gaining the doctor’s respect. Many members of the medical establishment treat parents as though they are ignorant and not worthy of being an equal member of the “team.” The other major hurdle was that each specialist liked to lay claim to whatever was going on with our child. For instance, our son exhibited behaviors that were not appropriate for a three-year-old child. He hit other children a lot! The gastroenterologist blamed the behavior on the fact that he was in pain from his GERD and was acting out. The allergist stated that the behavior was probably due to allergies. The neurologist said that he was PDD-NOS, while the developmental pediatrician diagnosed AD/HD. In truth, all of these things were components of the problem, but none of these specialists were correct in isolating their own area of specialty as the sole cause of the behavior. As the case manager, it was up to me to keep a “whole-child” perspective to determine what was really going on. It would have been nice to have a medical professional on our team who could help other professionals to see the big picture!
How were medical records shared/coordinated/even integrated?
They really weren’t. Each specialist would write up a report that was sent to our son’s pediatrician. Sometimes, they would confer on the phone with the pediatrician as well.
Given your experiences, what, ideally, do you want to see happen to benefit other families whose children will be experiencing similar challenges as those you faced?
I truly believe that the best course of action is built upon a model that looks at the needs of the whole child. I think of it as one-stop shopping, where medical professionals from all of the specialty areas are under one roof and work together as a team to best meet the needs of the child and the family. Families with children who have any kind of special need are way too taxed in their day-to-day life with the child to have enough energy to serve also as the case manager. They need to be able to rely on a trusted medical professional to act in this capacity.
I am more than willing to share the story on the excellent care that we received when our son was young; however, I do not believe that our experience fits exactly with the medical home model. I have read through the articles you wrote about your story with Andrew, and I believe that our experience might be closer in line to yours than a true "medical home."
I would like to personally thank Kirsten for her willingness to share her personal experiences and story. Only by sharing can families educate and help other families. This is part of CHADD’s mission: consumers and family members supporting other consumers and family members.