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Discussion of medical homes for children with special health care needs suggests such homes can provide quality health care services to children in partnership with families and community professionals. Early intervention and early childhood special education providers are encouraged to collaborate with primary health care professionals, thereby improving the system of care for children and families. (Contains references.) (Author/DB)

Children and youth with cerebral palsy present pediatricians with complex diagnostic and therapeutic challenges. In most instances, care also requires communication and comanagement with pediatric sub-specialists and pediatric surgical specialists, therapists, and community developmental and educational teams. The importance of family resilience to the patient's well-being broadens the ecologic scope of care, which highlights the value of a primary care medical home from which care is initiated, coordinated, and monitored and with which families can form a reliable alliance for information, support, and advocacy from the time of diagnosis through the transition to adulthood. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health maintenance, preventive care, and anticipatory guidance needed by all children. Pediatrics 2004;114:11061113; cerebral palsy, developmental disability, medical home, chronic illness, spasticity., INTRODUCTION Cerebral palsy is the third most common major developmental disability, after autism and mental retardation. More than 100 000 Americans younger than 18 years are affected by cerebral palsy, [...]

Families and professionals agree that children and adolescents need access to community-based medical homes. This is especially true for children with special health care needs (CSHCN). Most primary care practices are designed for children's routine preventive and acute care needs. CSHCN benefit from care that is integrated with well-child and acute care; coordinated and actively co-managed with specialists, therapists, and educators; and offered in a planned, anticipatory manner. As the primary caregiver and decision maker, families need to be supported in a culturally effective way. Families want community resources that are integrated with care processes. Primary care practices that serve CSHCN require a practical and effective improvement method to become fully realized medical homes. A change method, which blends improvement strategies with progressive measurement, must be perceived by practices as practical and helpful, and it must be supported. The Center for Medical Home Improvement has developed and tested an effective model of medical home improvement and tools to measure the status of a practice and its progress of change. Pediatrics 2004;113:1499-1506; children with special health care needs, medical home, quality improvement, primary care, care coordination, family-centered care. ABBREVIATIONS. CSHCN, children with special health care needs; MCHB, Maternal and Child Health Bureau; AAP, American Academy of Pediatrics; CMHI, Center for Medical Home Improvement; MHI, Medical Home Index; MHFI, Medical Home Family Index; CVC, clinical value compass., Most families and professionals agree that children need access to a medical home. (1,2) The medical home is a health care model for all children, but for children with special [...]

Down syndrome is a genetic disorder that can be identified prior to birth. The syndrome is the result of a chromosome abnormality, and features of the syndrome include moderate to severe mental retardation with distinct physical characteristics, such as short stature. Although Down syndrome can be predicted, the condition is permanent and there is no treatment. To investigate the reaction of parents and medical professionals concerning Down syndrome, an 18-minute film entitled 'Down Syndrome - A Parental Perspective' was shown to 36 mothers, 29 genetic counselors, and 32 nurses. The three groups contained individuals of similar age, educational backgrounds, and socioeconomic levels. The film consisted of videotaped discussions of parents of Down syndrome children, and was designed to introduce pertinent issues and stimulate further discussion. An evaluation was completed by the subjects after viewing the film, and some statistically significant trends emerged. When questioned on the accuracy of the film in portraying the attitudes of parents, 89 percent of the mothers responded that the film was accurate, but only 14 percent of the genetic counselors and 40 percent of the nurses believed the film was accurate in this respect. Ninety-four percent of the mothers and 83 percent of the nurses believed that the benefits of having a Down syndrome child outweigh the problems; 48 percent of the genetic counselors felt similarly. Most of the genetic counselors (56 percent) believed that parents would choose to abort a Down syndrome fetus, but only 8 percent of the mothers and 10 percent of the nurses felt that most parents would choose abortion. These results indicate that there is a gap between what parental attitudes towards Down syndrome children actually are, and what genetic counselors perceive them to be. Because the medical professionals that counsel parents on the results of genetic tests often have little or no contact with Down syndrome children and their parents, their knowledge of how families are affected by this condition must be increased in order to provide effective counseling. (Consumer Summary produced by Reliance Medical Information, Inc.)

Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home," are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research. [ABSTRACT FROM AUTHOR]