Goal: All children with special health care needs will receive coordinated, ongoing, comprehensive care within a medical home.
This program of the Maternal and Child Health Bureau (MCHB) is administered by its Division of Services for Children with Special Health Needs (DSCSHN). For more information on this and other programs of the Maternal and Child Health Bureau contact MCHB Communications (301) 594-4185 or go to www.mchb.hrsa.gov.
According to a recent study, 18 percent of all children (as many as 12.6 million children) have a chronic physical, developmental, behavioral, or emotional condition that requires health care and related services. This estimate does not include those “at risk.” Using MCHB’s broad definition, which includes the at-risk population, as much as one-third of the total child population has special health care needs. Risk factors may include a history of foster homes, poverty and/or violence, pre-maturity, or previous hospitalizations.
Both child health care professionals and families have identified the need for the provision of coordinated, comprehensive services through a pediatric medical home for children with special health care needs. As a natural outgrowth of the recent move to family-centered care, the concept of a medical home, particularly for children with special health care needs, has gained both acceptance and support. A medical home is the collaborative effort between primary care providers and children with special health care needs and their families to ensure that care is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and delivered in a culturally competent environment.
The Medical Home Program supports the implementation of statewide programs to ensure that every child has access to comprehensive health care through a medical home. Developed in partnership with the American Academy of Pediatrics (AAP), the program is being implemented nationwide by health care professionals, national advocacy organizations, State Title V Programs, and many other partners. Approximately $3 million in discretionary grants and contracts supports grants to States to implement the medical home concept; a cooperative agreement with the AAP to provide national leadership and training for physicians and other providers; and community grants to integrate the medical home concept into the ongoing system of care for children with special health care needs and their families. In addition, the Title V Maternal and Child Health Programs in every State dedicate resources toward achieving access to medical homes for all children with special health care needs and report annually on the number of children who have a medical home. Access to a medical home for every child has been identified by the National Healthy People 2010 Objectives as a major goal for the nation.
The National Center of Medical Home Initiatives for Children with Special Needs: www.aap.org/advocacy/medhome/AAP.htm. Learn about the Every Child Deserves a Medical Home Training Program and National Mentorship Network, which provide statewide and national technical assistance on implementation of the medical home concept, and the Community Access to Child Health (CATCH) Program.
Exeter Pediatrics, which has provided care to children in Exeter, NH, for the past 25 years, started the Rural Medical Home Improvement Project a year and half ago. The Rural Medical Home Team consists of two parent partners, a facilitator, a care coordinator, an office staff person, and a pediatrician. To improve care to children with special health care needs, the team: 1) created a care coordination brochure for families; 2) developed a family journal to inform both family and provider with identical summaries of the visit; and 3) hosted parent focus groups, which provided valuable insights into establishing an optimal medical home.
The Future of Pediatric Education (FOPE) II Task Force recommended in January 2000, that “all children should receive primary care services through a consistent ‘medical home.’ A medical home is not a building, house, or hospital, but rather an approach to providing continuous and comprehensive primary pediatric care from infancy through young adulthood, with availability 24 hours a day, 7 days a week, from a pediatrician or a physician whom families trust.”
—Pediatrics, January 2000
A national Family Voices’ survey found that between 40 and 50 percent of parents of children with special health care needs felt that the primary care office did not provide enough information to them about their child’s illness or disability. The Massachusetts Department of Public Health helped families of children with special health care needs stop “reinventing the wheel” every time they pursued information on their child’s conditions and care coordination in primary care settings by placing information on not just medical services, but child development, behavioral problems, family problems, educational issues, and access to community services in these practice settings.
In Oregon, the CaCoon Program unites specially trained nursing staff and parents of children with special health care needs into teams to provide services and support to busy primary care offices. This budding program helps establish and ensure medical homes and will help children with special health care needs blossom into the beautiful “butterflies” they want to be.
Nashaway Pediatrics in Sterling, MA, is dedicated to providing the highest quality, family-centered care that is accessible, coordinated, comprehensive, continuous, and culturally competent. “Our team consists of pediatricians, nurse practitioners, nurses, and clinical and clerical support staff, all of whom are comfortable with the principles of family-centered care provision. In 1991 our practice began a project intended to develop systems of care for children with special health care needs. Out of this project was born our Parent Advisory Group, which provides parent-to-parent support; individual and group advocacy training; and advice to the practice on how to be more family-centered. Nashaway Pediatrics is proud to consider itself a medical home for all children.”