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Included on this page are various downloadable resources about the medical home approach and the National Center of Medical Home Initiatives for Children with Special Health Care Needs (also known as the Division of Children with Special Needs at the American Academy of Pediatrics).

Fact Sheets Adobe PDF

Impact on Care Givers and Families

Policy Statements

Periodicals/Articles

  • Cooley WC; American Academy of Pediatrics Committee on Children with Disabilities. Providing a Primary Care Medical Home For Children and Youth with Cerebral Palsy. Elk Grove Village, IL: American Academy of Pediatrics; 2004
  • Cooley, CW. Redefining Primary Pediatric Care for Children with Special Health Care Needs: The Primary Care Medical Home Current Opinion in Pediatrics. December 2004;16(6):689-692
  • Cooley WC, McAllister JW, Sherrieb K, Clark RE. The medical home index: development and validation of a new practice-level measure of implementation of the medical home model. Ambul Pediat. 2003; 3(4)
  • Exceptional Parent, PO Box 2078, Marion, OH 43306-2178; Telephone: 877/372-7368
  • Geleske, TA. Building a medical home brick by brick. AAP News. September 2006;(27) 9: 44-45.
  • Kaczorowski J (ed.). Community pediatrics: Making child health at the community level an integral part of pediatric training and practice. Pediatrics 115(4, Suppl.):1119-1212
  • Kretzmann JP, McKnight JL. Building Communities From the Inside Out: A Path Toward Finding and Mobilizing A Community’s Assets. Chicago, IL: ACTA Publications; 1993. (Distributed exclusively by: ACTA Publications, 4848 N Clark St, Chicago, IL; 60640; 800/397-2282).
  • Mahoney, D. Medical Home Model Thrives at UCLA. E Pediatric News; 2004:38:9
  • Martin JC, Avant RF, Bowman MA, Bucholtz JR, Dickinson JR, Evans KL, Green LA, Henley DE, Jones WA, Matheny SC, Nevin JE, Panther SL, Puffer JC, Roberts RG, Rodgers DV, Sherwood RA, Stange KC, Weber CW; Future of Family Medicine Project Leadership Committee. The Future of Family Medicine: A Collaborative Project of the Family Medicine Community. Annals of Family Medicine 2:S3-S32; 2004
  • McBurney PG, Simpson KN and Darden PM. Potential Cost Savings of Decreased Emergency Department Visits Through Increased Continuity in a Pediatric Medical Home. Ambulatory Pediatrics: Vol. 4, No. 3, pp. 204–208; 2004
  • Nelson, CS, Higman, S, Sia, C, McFarlane, E, Fuddy, L, Duggan, A: Medical
    Homes for At-Risk Children: Parental Reports of Clinician- Parent Relationships,
    Anticipatory Guidance, and Behavior Changes.     Pediatrics 115:48-56, January
    2005.
  • Nickel RE, Desch LW. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Baltimore, MD: Paul H. Brookes Publishing Co; In press
  • Nyman R, Ireys H. Children with Special Health Care Needs: Building a Quality-of-Care Initiative. Washington, DC: Mathematica Policy Research, Inc. 2004.

    "A more comprehensive approach is needed to care for all CSHCN," state the authors of Children with Special Health Care Needs: Building a Quality-of-Care Initiative. The issue brief, published by Mathematica Policy Research, Inc., with support from the Maternal and Child Health Bureau, summarizes recent studies investigating utilization and cost patterns among a large sample of CSHCN enrolled in two commercial managed care plans.

    The authors identified CSHCN ages 18 and younger enrolled in two commercial open-access managed care plans from 1999 to 2001. The analysis examined the spectrum of services and costs (including pharmacy and ancillary services) and explored potential implications for health plans. The authors found that:
    • Twelve percent of the enrolled children (N=26,949) had special health care needs in 2001. The cost of care -- $99.4 million -- represented 47% of the total costs for all children in the two plans. Among CSHCN, those with more complex and severe conditions had considerably higher average costs than other CSHCN.
    • The number of prescriptions written for CSHCN increased by only 8% from 1999 to 2001, but their pharmaceutical costs increased by 56% during this period. Prescription drugs accounted for 14% of total costs for all covered services for CSHCN in 2001. Inpatient care, specialty physician visits, and primary care visits accounted for 28%, 10%, and 9% of total costs, respectively.
    • Thirty-seven percent of the children in the study had an emotional or behavioral condition in 2001. Outpatient mental health services accounted for 11% of total costs of care for CSHCN with emotional or behavioral conditions; prescription drugs accounted for 22%. The most commonly prescribed drugs for CSHCN with emotional or behavioral disorders were stimulants, prescribed for 64% of children ages 6 to 12 and 35% of adolescents age 13 and over in this group. Antidepressants were prescribed for 17% of those ages 6 to 12 and 40% of those ages 13 and over.

    The authors conclude that "an effective quality improvement project will need a team of health plan staff with experience in pediatrics, quality assessment, and data management who can work together to identify, implement, and evaluate the impact and cost of an appropriate strategy."

  • Oneufer, CN, Marks, J, Gbson. A new momentum on building a medical home for the child with a chronic health problem. Contemporary Pediatrics. October 2006;(23)10: 65-73.
  • Smith PJ, Santoli JM, Chu SY, Ochoa DQ, Rodewald LE. The Association Between Having a Medical Home and Vaccination Coverage Among Children Eligible for the Vaccines for Children Program. Pediatrics. 2005;116 130-139
  • Spector ND, Kelly SF. Medical Home, Obesity, Acute Otitis Media, and Otitis Media with Effusion. Current Opinion in Pediatrics December 2004;16(6):706-722
  • Stagg Elliott V. Medical Home Model Gains Momentum AMNews. August. 9, 2004

    South Carolina's Medical Home Case Studies in the News
  • South Carolina's Case Study of their First Medical Home Mentor Site (June, 2004)
    The Data: "Specifically, Medicaid data is used to examine office visits, inpatient hospitalizations, emergency room visits, pharmacy claims, and dental services. A comparison group matched on demographic, diagnostic, and health service utilization descriptors was created... The most dramatic difference, which was statistically significant, was the rate of emergency room visits resulting in inpatient hospitalizations for the case group from the pre-medical home quarters (1 4) to the medical home year quarters (5 8)."
  • Palmetto Pediatrics - A Case Study of Dr. Robert Walker's Medical Home Mentor Site
    "Palmetto Pediatric and Adolescent Clinic is a large practice that includes 16 physicians working in 4 office locations in the Greater Columbia Metropolitan Area in central South Carolina. The practice patient population is characterized as fairly educated and affluent with the majority of parents of children with special health care needs equipped and empowered to navigate their systems of care and advocate on their children’s behalf. Approximately 26% of practice patients are Medicaid eligible."
  • A Case Study of FREE - Families and Residents Educational Experience
    "The FREE program at the University of South Carolina School of Medicine is a collaborative effort between the Department of Pediatrics and Family Connection. The program teaches pediatric residents the knowledge and skills necessary to provide family-centered, community based care for children with special needs and their families. This program is unique in that families are the teachers and the community becomes the classroom."

Workbooks
Enhancing Collaboration Between Primary and Subspecialty Care Providers for Children and Youth With Special Health Care Needs | Workbook
Antonelli, R., Stille, C., and Freeman, L. , Georgetown University Center for Child and Human Development, Washington, DC, 2005.
Available to order at: gucchd.georgetown.edu/object_view.html?objectID=6582

"An essential component of the Medical Home model is the ability to provide services that are coordinated. But who is responsible for coordinating care?
Without question, the family and patient are the principal coordinators of care. However, it is vital that all providers within the Medical Home model of care understand their interdependent roles and effectively serve the child and family. Indeed, the collaboration between primary and subspecialty providers is a critical aspect of coordinated care
within a Medical Home model."

    Goals of This Guide
  • Discuss the complementary roles of generalist and subspecialist physicians in providing coordinated and effective care for CYSHCN.
  • Emphasize the centrality of family-professional partnerships.
  • Describe various models for collaboration among generalist and subspecialist physicians and families.

    Ultimately, the value of this guide will be to serve as a framework for discussion about how primary and subspecialty care physicians can work collaboratively to enhance the quality of care that CYSHCN and their families receive. While it is essential to appreciate the structural and functional differences among various health care delivery systems, a core expectation for creating Medical Homes is that each system and community will embrace the critical components underlying collaboration outlined in this guide.

    Table of Contents
  • Why Is Collaboration Between Primary and Subspecialty Care Providers Important
  • What Is the Framework for a Collaborative Model of Care for CYSHCN?
  • Implementation of Collaborative Care Between Primary and Subspecialty Care Providers
  • Special Challenges and Opportunities
  • Measures of Health Care Quality
  • Resources and Tools to Enhance Collaboration in Caring for CYSHCN
  • Very Useful Web sites

Strengthening the Community System of Care for Children and Youth with Special Health Care Needs and Their Families. Collaboration Between Health Care and Community Service Systems: Workbook

Suzanne Bronheim, PhD. Senior Policy Associate. Georgetown University Center for Child and Human Development and Thomas Tonniges, MD. Director, Department of Community Pediatrics. American Academy of Pediatrics

Overview
The workbook provides suggestions and exercises designed to help the health care system reach out to the broader system of community services and to help the community services system engage the health system to build a comprehensive community system of care. A list of other resources related to collaboration are provided.

Hard copies may be ordered, on www.ask.hrsa.gov/ or calling 1-888-ASK-HRSA (275-4772) requesting document number is MCH00150.

Presentations
The National Center of Medical Home Initiatives for CSHCN Power point Presentations:
including the Every Child Deserves a Medical Home Training Program slides:

  • Common Elements Component
  • Family-Professional Partnerships Component
  • Practices, Policies and Procedures Component
  • Comprehensive, Coordinated, Collaborative Care Component
  • Transitions Component
  • State and Local Advocacy
  • Surveillance and Screening

Developing Primary Care Medical Homes for CSHCN. Presented at The Institute for Leaders in State Title V CSHCN Programs. Baltimore, MD. May 19, 2003. By W. Carl Cooley. Center for Medical Home Improvement (Audio)

Building Systems of Care for Children: Medical Home and ECCS Programs. Presented at the National State Early Childhood Comprehensive Systems (ECCS) Grantee Meeting. Reston, VA. December 5, 2004. By Tom Tonniges, MD.

Documentaries

  • South Carolina Educational Television stations (SC ETV) aired Special Children Special Care on Sunday, April 6.
    An hour long documentary about South Carolinians special children and their stories of challenge and caring. A cooperative effort of South Carolina ETV and the State Medical Home Team. You can view this program by clicking on the links below:

    If you'd like to purchase this program for your own library, visit SCETVStore.org and click on New Releases or enter "special care" in the search box.

    Download the flyer about the medical home broadcast on SC ETV and share this information with family and friends. You can also download the viewer guide for Special Children, Special Care

    For more information you can contact www.familyconnectionsc.org.

  • Video on the Oregon Medical Home Network
    The Oregon Medical Home Network consists of six primary care practices and the Office of the Oregon Medical Home Project at CDRC who have participated in a 3-year project designed to improve services for families with children and youth having special health care needs.

    A new video is now available where you can learn more about the network, meet the community teams, and hear from pediatric clinicians and families on the importance of having a medical home.

 Last Updated August 21, 2008
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