Medical Homes for Children with Special Healthcare Needs

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?

None.

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!