MEDICAL HOME
The concept of a medical home has long been endorsed by the American Academy of Pediatrics as the optimal model for the provision of primary care for all children. As defined in 1992, a medical home should provide care that is “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 patient care. The physician should be known to the child and family, and should be able to develop a relationship of mutual responsibility and trust with them” (3,4). The provision of “culturally effective” care is an additional mandate of a medical home.Given the multiplicity of the needs of CSHCN, access to a medical home, as defined previously, is of critical importance. Beyond the provision of acute and routine medical care, the medical home can provide both “vertical links” within the medical community and “horizontal links” to the wider community. Within such a network, families should feel that they have a supportive, effective, informed, and caring network to rely on to help them meet the acute, chronic, and often unanticipated problems of a child with special health care needs.
Within the medical community, families rely on the primary care physician to make appropriate referrals to and communicate with the multiple subspecialists who also provide care to many of these children. It can be of enormous benefit to have a designated individual in the office or clinic who is able to coordinate multiple appointments on the same day, thus lessening the burden of travel for these families. Having translator services available, as well as written materials in the family's primary language, is an additional benefit.
Children with special health care needs often require therapeutic as well as supportive services. Examples of therapeutic services include home nursing; physical, occupational, or speech therapy; and in some cases, mental health services. Supportive services may include the provision of letters of medical necessity, assistance with transportation, acquisition of durable medical equipment, provision of information regarding financial entitlements and respite care, connections to community support groups, and communication with schools. Care coordination can and should be facilitated by knowledgeable individuals within the medical home, typically experienced registered nurses (RNs) and social workers. The provision of such services can play a pivotal role in decreasing the care burden on the family, promoting maximal independence of the child and enabling full participation in community life. The medical home has additionally been described as an effective model for implementing a successful transition to adult medical care as children with special health care needs age.