Medical Home and Transition Planning for Children and Youth with Special Health Care Needs
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
References (17)
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Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society of Adolescent Medicine
J Adolesc Health
(1993) Success on the road to adulthood: issues and hurdles for adolescents with disabilities
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Youth with chronic conditions in transition to adult health care: an overview
Adolesc Med
(1994) Transition to adulthood: adolescents with disabilities
Healthy people 2010
- National Center for Medical Home Implementation. Available at: www.medicalhomeinfo.org. Accessed October 27,...
Cited by (23)
Do health literacy disparities explain racial disparities in family-centered care for youths with special health care needs?
2021, Patient Education and CounselingCitation Excerpt :For young children, the bulk of family-centered care occurs through interactions between parents and providers. However, as these children enter adolescence, they begin their transition to managing their own health and becoming collaborative and ultimately independent consumers of healthcare services [11–13]. The timing and pace of this transition varies with the youths’ health conditions and developmental status.
Health care transition for adolescents with special healthcare needs: Where is nursing?
2013, Nursing OutlookCitation Excerpt :The leadership demonstrated primarily by the AAP, SAH, and other pediatric medical organizations has played a dominant role in shaping the development of the healthcare transition field of practice and the science. Consequently, this prevailing influence has led to a medically oriented focus with emphasis on the role of the physician in the provision of services, the transfer event involving movement to adult medical care, application of the medical home as the framework of care and focus on biomedical and service-oriented outcomes (AAP, AAFP, ACP, 2011; Burdo-Hartmanm & Patel, 2008). The aforementioned position statements emphasize a hierarchical configuration with the pediatrician as the lead professional who directs and oversees the team efforts with the providing of healthcare transition services.
Developmental disabilities across the lifespan
2010, Disease-a-MonthCitation Excerpt :The recent development of erectile dysfunction medications and their widespread advertisements by pharmaceutical companies has impacted this issue in males but not females. Since the USA Surgeon General Conference in 1989, Growing Up and Getting Medical Care: Youth with Special Healthcare Needs, there has been an increasing interest in the need for an organized plan for young adults who have DD to move from child-oriented systems of health care to adult-oriented systems of health care.263-266 Ninety percent of children and youth with special health care needs survive into adulthood.
Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral, and Developmental Disorders
2020, Maternal and Child Health JournalCommentary: Addressing health disparities in adults with developmental disabilities
2019, Ethnicity and Disease