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The National Center has compiled and organized all of the articles, policy statements and reports that have been developed on the Medical Home and the 7 elements that ensure that care is accessible, family-centered, continuous, comprehensive, coordinated , compassionate and culturally competent.

General Medical Home Information

Impact on Care Givers and Families

Policy Statements

Periodicals/Articles

Accessibility

Policy Statements

Periodicals/Articles

Reports/Documents


Health Care Financing

Policy Statements

Periodicals/Articles

Reports/Documents


Rural Initiatives

Articles/Reports

Policy Statements

Continuous, Comprehensive, Coordinated Care

Policy Statements

Periodicals/Articles

Reports/Documents

  • Innovative Approaches for Improving Referral, Consultation, and Shared Management in Primary and Specialty Pediatric Care
    Washington, DC -- A new report from the Federal Expert Work Group on Pediatric Subspecialty Capacity and the MCH Policy Research Center profiles promising approaches to strengthen collaboration between primary and specialty pediatric care. The report, Promising Approaches for Improving the Interface between Primary and Specialty Pediatric Care, describes 10 real-world strategies to address referral, consultation, and shared management that can improve the availability of pediatric subspecialty care and enhance health outcomes for children.

    The Federal Expert Work Group on Pediatric Subspecialty Capacity was formed by the Maternal and Child Health Bureau in response to growing evidence that access to pediatric subspecialty care in many parts of the U.S. is worsening. The group has 3 main objectives: 1) define the scope of current and projected pediatric subspecialty capacity problems and their consequences; 2) identify promising approaches for improving shared management between pediatric subspecialists and medical homes, reimbursement, continuing education and training, and state/regional delivery system networks; and 3) develop recommendations and a tactical plan to improve access to subspecialty care.

  • MCHB and JSI Release Review of Care Coordination Activities of DSCSHN State Implementation Grantees
    Several of the health insurance and financing implementation grantees funded by the Division of Services for Children with Special Healthcare Needs (DSCSHN) of the Maternal Child Health Bureau (MCHB), had expressed an interest in examining care coordination models. An initial recommendation to review care coordination activities among these grantees sparked an interest to expand this review to all state implementation grantees. While a previous study had focused on the role of Title V in care coordination, there had never been a review of the role of state implementation grantees in this critical aspect of developing a system of care for CYSHCN.

    As part of their current contract with DSCSHN, John Snow, Inc. (JSI) was asked to develop a survey to capture the range of activities among the state implementation grantees. This report addresses all 6 of the Healthy People 2010 outcomes, through a survey of all MCHB State Implementation grantees. The survey focused on the care coordination activities of the grantees, such as methods of care coordination program development and implementation, methods of financing, and effectiveness of care coordination.

  • 2006 Medicare Care Management Demonstration Project
    This 3 year demonstration was mandated under Section 649 of the MMA to promote the use of health information technology and improve the quality of care for beneficiaries. Doctors in small to medium sized practices who meet clinical performance measure standards will receive a bonus payment for managing the care of eligible Medicare beneficiaries. The demonstration will be implemented in California, Arkansas, Massachusetts and Utah.

  • 2001 Medicare Coordinated Care Demonstration
    This project tests whether providing coordinated care services to Medicare beneficiaries with complex chronic conditions can yield better patient outcomes without increasing program costs. Medicare will test the cost-effectiveness of paying for case management and disease management services under the Medicare Coordinated Care Demonstration. These coordinated care interventions will supplement routine care for chronically ill beneficiaries.

    Historically, a small proportion of Medicare fee-for-service beneficiaries has accounted for a disproportionate share of Medicare expenditures. These beneficiaries often suffer from one or more chronic illnesses and require repeated costly hospitalizations. They typically receive fragmented health care across multiple health care providers and multiple sites of care. Moreover, providers may not follow evidence-based guidelines, and patients may not know how to care best for themselves. As the population ages, the number of chronically ill beneficiaries is expected to grow dramatically, with serious implications for Medicare program costs.

    The Medicare Coordinated Care Demonstration, authorized by the Balanced Budget Act of 1997, will target beneficiaries with chronic conditions that represent high costs to the Medicare program, such as asthma, diabetes, congestive heart failure and related cardiac conditions, hypertension, coronary artery disease, cardiovascular and cerebrovascular conditions, chronic lung disease, cancer and other chronic conditions.

    Beneficiaries will receive comprehensive care planning, patient education, and ongoing monitoring between doctor visits to improve self-care, identify complications early, avoid costly hospitalizations, and better coordinate treatments and medications for multiple illnesses and conditions. In addition, some of the projects will offer participating beneficiaries additional benefits aimed at removing barriers to prompt medical care, such as coordinating with community-based services, transportation, assistance with medications, non-covered home visits, and medical equipment. Beneficiaries will not have out-of-pocket costs for the demonstration services.

Fifty-eight applicants submitted proposals by the October 11, 2000 application deadline. CMS announced the selection of 15 demonstration sites in January 2001.

The demonstration was implemented on a rolling basis starting April 1, 2002. All 15 demonstration sites are now in operation.

Screening and Surveillance

General Information
Policy Statements

Reports/Documents

Hearing Screening
Policy Statements

Periodicals/Articles

Vision Screening
Policy Statements

Periodicals/Articles

  • Hartmann EE, Dobson V, Hainline L, et al. Preschool Vision Screening: Summary of a Task Force Report. Pediatrics. 2000,106(5):1105-1116

Newborn Metabolic/Genetic Screening
Policy Statements

Periodicals/Articles

Reports/Documents

  • Newborn Screening Task Force Report. Supplement to Pediatrics. Elk Grove Village, IL. American Academy of Pediatrics; 2000.
  • Compendium of Newborn Screening Abstracts
    As a companion piece to the Newborn Screening Task Force report, a compendium of newborn screening abstracts has been developed. This document (Updated October 2002 and available as a Word document Microsoft Word Document or as an End Note library includes all of the references from the Task Force report, as well as other more up-to-date references and abstracts. This compendium will be updated as relevant articles on the topic of newborn screening are published.
  • GAO Report on Newborn Screening: Characteristics of State Programs (March 2003)
    www.gao.gov/new.items/d03449.pdf Adob PDF
  • Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) www.mchb.hrsa.gov/programs/genetics/committee/default.htm
    ACHDGDNC was established to advise and guide the Secretary, US Department of Health & Human Services regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and programs for effectively reducing morbidity and mortality in newborns and children having or at risk for heritable disorders.
  • Association of State and Territorial Health Officials
    Issue brief: state strategies to promote coordination of the newborn screening system. August 2004; Washington, DC
  • 2003 GSB/MCHB Integration of Newborn Screening & Genetic Service Systems with Other Maternal and Child Health Systems.
    Summary of the October 15-16, 2003 conference

    Transitions

Periodicals/Articles

  • Freeman JT. Sexuality and Disability Webliography: The Wellness and Disability Initiative of the British Columbia Coalition of People with Disabilities web-based bibliography; May 29, 2002
  • Exceptional Parent.
  • Betz CL. Adolescent transitions: a nursing concern. Pediatric Nursing. 1998;24:23-30
  • Betz CL. Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Pediatric Nursing. 1998;21:97-115
  • Bloomquist KB, Brown G, Peersen A, and Presler EP. Transition to Independence: Challenges for Young People with Disabilities and their Caregivers. Orthopedic Nursing. 1998;27-35
  • Blum RW. Transition to adult health care: setting the stage. Conference Proceedings. Journal of Adolescent Health. 1995;17:3-5
  • Blum RW, Garel D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health. 1993;14:570-576
  • Bowes G, Sinnema G, Suris J, Buhlmann U. Transition health services for youth with disabilities: a global perspective. Conference Proceedings. Journal of Adolescent Health. 1995;171:23-31
  • Davis, M. & Sondheimer, D. L. State child mental health efforts to support youth
    transition to adulthood. Journal of Behavioral Health Services & Research. 2005;32:1:27-42 Summary
  • Franzini L, Marks E, Cromwell PF. Projected economic costs due to health consequences of teenagers' loss of confidentiality in obtaining reproductive health care services in Texas. Archives of Pediatrics and Adolescent Medicine. 2004;1589(12):1140-1146
  • Hallum A. Disability and the transition to adulthood: Issues for the disabled child, the family and the pediatrician. Current Problems in Pediatrics. 1995;25:12-50
  • Johnson C. Transition into adulthood. Pediatric Annals. 1995;24:269
  • McCabe M. Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of Pediatric Psychology. 1996;21:505-516 (Issues-oriented article that reviews the salient aspects of medical decision making by children and adolescents. Issues pertaining to informed consent, developmental level and clinical issues are discussed. Case examples are provided for illustration.)
  • Newacheck PW. Adolescents with special needs: prevalence, severity, and access to health services. Pediatrics. 1992;84:872-881
  • Newacheck PW, Strickland B, Skonkoff JP, et al. An epidemiological profile of children with special health care needs. Pediatrics. 1998;102:117-123
  • Olsen DG and Swigonski NL. Transition to Adulthood: The Important Role of the Pediatrician. Pediatrics, 2004;113:e159-162
  • Powers L, Sowers J, Stevens T. An exploratory, randomized study of the impact of mentoring on the self-efficacy and community-based knowledge of adolescents with severe physical challenges. Journal of Rehabilitation. 1995; 33-41
  • Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD. Prevalence and Correlates of Successful Transfer from Pediatric to Adult Health Care Among a Cohort of Young Adults with Complex Congenital Heart Defects. Pediatrics. 2004;113(3 Pt 1):e197-205
  • Rosen DS. Transition from pediatric to adult-oriented health care for the adolescent with chronic illness or disability. Adolescent Medicine: State of the Art Reviews. 1994;5:241-247
  • Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. Journal of Adolescent Health. 1995;17:10-16
  • S. Todd Callahan, MD, MPH; William O. Cooper, MD, MPH Access to Health Care for Young Adults With Disabling Chronic Conditions Arch Pediatr Adolesc Med. 2006;160:178-182
  • Sawyer SM, Blair S, Bowes G. Chronic illness in adolescents: transfer or transition to adult services? Journal of Pediatric and Child Health. 1997;33:88-90
  • Sawyer, SM, Aroni RA. Self-Management in Adolescents with Chronic Illness. What does it mean and how can it be achieved? MJA 2005;183(8):405-409
  • Scal P, Evans T, Blozis S, et al. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health. 1999;24:259-264
  • Schultz A, Liptak G. Helping adolescents who have disabilities negotiate transitions to adulthood. Issues in Comprehensive Pediatric Nursing. 1998;21:187-201
  • Transition of care: the role of the nurse practitioner: Diabetes Spectrum. 1998;11:186
  • Werner P. Primary care for persons with disabilities: family practice perspective. American Journal of Physical Medicine and Rehabilitation. 1997;76(suppl):S21-24
  • White P. Success on the road to adulthood. Pediatric Rheumatology. 1997;23:697-707
  • Whitehouse S, Paone M. Patients in transition: bridging the health care gap from youth to adulthood. Contemporary Pediatrics (Canada). 1998;December:13-16

Policy Statements

Reports/Documents

  • McManus M., Fox H., O'Connor K., Chapman T., MacKinnon J.
    Pediatric Perspectives on Transitioning Adolescents with Special Health Needs to Adult Health Care
    The National Alliance to Advance Adolescent Health; Factsheet No.6, October 2008
    This fact sheet presents new national data on the transition support services offered in pediatric practices to adolescents with special needs and the barriers affecting their availability. We found that most pediatric practices do not initiate transition planning early in adolescence or offer the transition support services identified as critical for ensuring a smooth transition to adult health care.  Gaps in transition support are due in part to limited staff training; lack of an identified staff person responsible for transition; financial barriers; and anxiety on the part of pediatricians, adolescents, and their parents about planning for their future health care.

  • Roulstone A, Gradwell L, Price J, Child L. How disabled people manage in the workplace. Published for the Foundation by The Policy Press (ISBN 1 86134) 5224
    This study explored how disabled people get by in the workplace and looked at the nature of the support they require and receive.

Compassionate Care

Periodicals/ Articles

Reports/Documents

Children's Compassionate Care Act 2003 - In the Senate of the United States September 17, 2003 - A Bill to improve the palliative and end-of-life care provided to children with life-threatening conditions, and for other purposes.

Compassionate Care in the ICU - Practitioners witness death on a regular basis in the intensive care unit. For that reason, one might think that they would be comfortable talking with patients and families about end-of-life issues. Ironically, this is not the case. The program features interviews with six thought leaders in compassionate care.

Defining the Patient-Physician Relationship for the 21st Century
This document reflects the conferees’ beliefs about what constitutes an ideal patient physician relationship. It specifically does not address barriers to reaching that ideal or strategies for overcoming those barriers. That remains the continuing task for all of us.

Culturally Effective Care

Periodicals/Articles