Medical Home and Transition Planning for Children and Youth with Special Health Care Needs

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Although many physicians may practice medical home medicine, most of the health care system is set up for acute episodic care. For children and youth with special health care needs (CYSHCN), this is costly and inefficient care and unsatisfactory for the patient and family. Transition or the purposeful planned movement of adolescents and young adults with chronic conditions from child-centered to adult-centered care began to evolve in the 1980s as more and more CYSHCN survived into adulthood. There is some progress being made in the implementation of the medical home that may facilitate a more effective transition of young individuals who have developmental disabilities. The greatest barrier to successful transition remains ensuring affordable, continuous health insurance coverage for all young people with special health care needs throughout adolescence and adulthood and engaging adult-oriented health care systems to take over the medical care of these young individuals.

Section snippets

Medical home

The medical home is an approach to providing comprehensive primary care to CYSHCN (Box 1). This approach was first proposed by the American Academy of Pediatrics in 1967 as health care that is accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. The essential partners in the medical home are the patient, the parents or legal guardians, the physician, and the care coordinator. They work together to achieve the maximum potential for the

Case study

A call was taken on a Friday afternoon in the neurodevelopmental pediatric office from the stepmother of a 20-year-old woman with Rett syndrome. She was looking for an adult neurologist because the pediatric neurologist had recently retired and the family was having difficulty in finding someone to take on the woman's seizure management. The patient's nutritionist recommended that the stepmother call the neurodevelopmental office for advice.

The young woman was seen in neurodevelopmental clinic.

What is transition planning?

According to the Society for Adolescent Medicine, transition is the purposeful planned movement of adolescents and young adults with chronic conditions from child-centered to adult-centered care.7 Transition services, as defined in the Individuals with Disabilities Act (IDEA) of 2004, are “a coordinated set of activities for a child with a disability that (A) is designed to be within a results-oriented process that is focused on improving the academic and functional achievement of the child

Transition planning in a medical home

In a study by Lotstein and colleagues,14 50% of respondents had discussed their child's changing health care needs with their physicians. Youth who met criteria for residing in a medical home were more likely to have a discussion about their changing needs and to have a plan addressing those needs. Young adults of older age who resided in a medical home were significantly associated with increased odds of meeting the Maternal and Child Health Bureau outcome measure of having a transition plan.15

Special challenges to transition

Several barriers to successful transition have been identified (Box 3).7 Low expectations of these individuals and social isolation may be the most important barriers. Low expectations could be on the part of the family, the physicians, society, or, finally, the patient. By not developing a “life plan (not illness),” the individual is set up for a life of dependency and not one for achieving his or her fullest potential.17 Specific areas that are a challenge to successful transition for

Transitions outside of health care

In addition to health care, young individuals who have developmental disabilities, not unlike their peers without developmental disabilities, experience many transitions as they grow up in areas of education and training, independent living, and moving toward financial independence. Community living (Table 2), workplace options (Table 3), and financial planning are much more complex issues for young individuals who have developmental disabilities. Independent living depends on the functional

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