Parent and Physician Perceptions of Medical Home Needs for Children with Autism in Kentucky

Background:  The medical home concept (AAP, 2002) proposed that care of children be accessible, continuous, comprehensive, family centered, coordinated, compassionate and culturally effective.  The medical home is the model of care for children with special health care needs such as autism, but is often difficult to implement.  Children with special health care needs are more likely to have delayed care, care coordination needs, and referral problems. Although few studies have specifically addressed medical home implementation for children with autism, barriers may include lack of reimbursement for coordination efforts, family attitudes toward vaccines and traditional medicine, and use of alternative medicine.

Objectives:  This study surveyed parents of children with ASD and pediatricians in the state of Kentucky to determine needs in establishing comprehensive medical homes for children with autism.

Methods:  A parent survey was distributed to the list serve of the Kentucky Autism Training Center and was completed by one hundred parents of children with autism via Survey Monkey.  A physician survey was distributed to members of the Kentucky Chapter of the AAP and twenty-five physicians completed the survey.

Results:  The majority of parents of children with ASD were satisifed with the routine medical care provided by their pediatricians, but reported inadequate discussion of autism treatment and community resources. Most pediatricians felt comfortable providing routine health care to children with autism but were uncomfortable addressing associated conditions such as sleep and behavioral concerns, alternative biomedical treatments and educational intervetnions.  Of particular concern was the finding that less than half of physicians routinely administered autism specific screening tests at 24 months, as recommended by the AAP.

Conclusions:  Feedback from parents of children with ASD and pediatricians indicated general satisfaction with routine health care, but deficiencies in early identification and guidance on autism specific issues, such as sleep, behavioral concerns, Individuals Education Plans and community resources.  Increased national and regional resources in autism, as well as physician education and outreach, will be needed to address these barriers to providing comprehensive medical homes for children with ASD in the state of Kentucky