Finding A Medical Home

If you have a child with special needs, you must find your family a medical home.  The American Academy of Pediatrics (AAP) defines a medical home as accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally-effective.  Your pediatrician is your quarterback, and if your child has multiple issues requiring technology, therapies, and home health nursing, your pediatrician’s office should serve as your medical home in the following ways:

Accessible

Your primary care pediatrician’s office should be easy to access.  When you call to make a well child appointment, you should always be scheduled with your regular doctor.  If your child is ill, does the office same-day appointments?  Does the office answer questions by phone or portal in a timely fashion?

Be sure to pay attention to where and how many disabled parking spots there are, so you can easily maneuver your child and her equipment into and out of the building.  If you use non-emergent ambulance transport, does the office accommodate adequate space for the stretcher?  Laboratory and diagnostic imaging facilities should be easily accessed as well.

Continuous

A medical home should give you the opportunity to see your doctor as often as possible, for both well child and sick visits.  For children with special needs and multiple diagnoses, your doctor knows your family’s medical, developmental, mental, and social needs best.  

Transitions are often challenging for families of children with special needs.  After urgent care/emergency department (UC/ED) visits or hospitalizations, your medical home should schedule follow-up visits to catch up on new findings, changes to medications, laboratory and diagnostic imaging results, and to make sure your child is getting better.  If your child’s hospitalization is prolonged, hospital staff may often schedule a care conference to help summarize what happened during the stay so everyone understands the plan moving forward.  When time permits, primary care pediatricians who care for children with special needs often attend these care conferences to help you make a smooth transition.

As your teen approaches adulthood, finding a new medical home and team of providers will become necessary and your pediatric medical home should help you plan this transition as well.

Comprehensive

Your medical home should provide primary care (well child checks, vaccines, guidance about nutrition, development, safety and discipline) and acute care (sick visits, follow-ups from ED visits or hospitalizations).  Your pediatrician should have a relationship with your preferred hospital to stay up-to-date on your child’s health status and any changes.

The medical home should also serve as a place to keep all of your medical records, including discharge summaries from the hospital and consultation notes from specialists you see outside of your pediatrician’s network.

Family-Centered

Families of children with special needs are unique and your pediatrician needs to be prepared to not only care for your child with multiple issues, but to also recognize when your other children are being affected by the dynamic in the home.  

Decision-making should be shared--you should be offered options when it is time to make decisions, and everyone’s vote (including yours!) counts equally.

Pediatricians realize that accessing health care is a complex phenomenon and involves many issues outside of the clinic setting.  A social worker, an integral part of the medical home team, can help tackle the problems of insurance coverage, public housing, and food insecurity.

Coordinated

Obtaining referrals and orders for laboratory or diagnostic imaging tests should be well coordinated.  Pediatricians should collaborate with subspecialists to create a shared care plan.  Your medical home should also communicate with therapy providers, home health nursing agencies, and durable medical equipment (DME) vendors.

Compassionate

The pediatrician and staff of a medical home should recognize that every family is different and every caregiver will have different goals for her child.  If there are differences of opinion, you should still feel that you are receiving compassionate care from your doctors and nurses.

Culturally-sensitive

This is different from language-barriers.  Certainly, you should receive the care your child needs in your preferred languages, but diverse cultures carry diverse beliefs about health and treatment.  Your medical home should devise a care plan that seriously incorporates your cultural preferences.

If you believe your child is eligible to see a complex care pediatrician and are looking for a medical home, please call 210-704-4966.