This literature page houses links to articles, policy statements, and reports about the medical home and the elements that ensure care is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent.
American Academy of Pediatrics; Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The Medical Home (RE9262).Pediatrics. 2002;110(1):184-186.
State Policy Options to Establish Medical Homes for Children and Youth. Issue Report from the Association of State and Territorial Health Officials. January 2005.
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.
Faces of Medicaid Kaiser Family Foundation's Commission on Medicaid and the Uninsured
This online tool shows real examples of Medicaid enrollees and the types of services the program covers, many of which are children with special health care needs. This tool profiles 16 individuals and families from around the US, who are among the 60 million people nationally enrolled in Medicaid as their main mode of access to a medical home.
Compiled Fact Sheet on Medical Home Data from the AAP The fact sheet is to inform key aspects of the pediatric medical home, and is a data fact sheet of summary statistics and facts from various AAP and public and proprietary sources. This resource is conceived not as a comprehensive data compendium, but rather as a living document, the content of which will continue to evolve as we get to different stages of discussions and implementations of the medical home.
Federal Transit Administration Information on Access for Persons With Disabilities The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity and access for persons with disabilities. The Federal Transit Administration works to ensure nondiscriminatory transportation in support of our mission to enhance the social and economic quality of life for all Americans. The FTA Office of Civil Rights is responsible for civil rights compliance and monitoring to ensure nondiscriminatory provision of transit services.
Rite of Passage? Why Young Adults Become Uninsured and How New Policies Can Help Commonwealth Fund, May 2006 Americans between ages 19 and 29 represent the largest and fastest-growing segment of the population without health coverage. The consequences of being uninsured are serious: more than half (57%) of young adults in the study without coverage reported having gone without needed health care because of the cost.
Public Coverage Provides Vital Safety Net for Children with Special Health Care Needs Center for Studying Health System Change, September 2005
This issue brief describes select findings from the 2003 Community Tracking Study Household Survey, which includes data on a nationally representative sample of children ages 18 and younger. The issue brief presents an analysis of data collected for 7,327 children, of which 1,523 were identified as Children with Special Health Care Needs. The brief provides data on insurance coverage for children with and without special health care needs as a whole and by income, access to care for children with and without special health care needs by insurance status, and access to care for children with and without medical bill problems. The brief concludes with a discussion of the policy implications of the study findings.
Children with Special Health Care Needs: Minding the Gaps National Health Policy Forum, June 2005
This report examines how Children with Special Health Care Needs interact with the health care system and discusses weaknesses within health delivery and financing systems that may hinder access to care.
NC Mercer Study on Evidence of Savings in Medicaid
The State of North Carolina's (State's) Division of Medical Assistance (DMA) requested Mercer Government Human Services Consulting (Mercer) to analyze the cost effectiveness of the state's ACCESS program for state fiscal year 2004 (SFY04), covering dates of service from July 2003 - June 2004. This letter summarizes the methodology Mercer used to compare costs against benchmarks as part ofthe cost-effectiveness analysis for specified services provided to the Aid to Families with Dependent Children (AFDC) category of aid (COA).
The Cover Memo from the American Academy of Pediatrics on the Patient Centered Primary Care Collaborative (PCPCC) Purchaser's Guide and the PCPCC Guide.
MCH Policy Research Center Publications are organized into reports and articles according to eight topic areas: Medicaid, SCHIP, private health insurance, managed care, Children with Special Health Care Needs, adolescents, children's health service delivery, and pediatric provider capacity.
The Catalyst Center is a national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN). Please visit their Publications page for more updated resources.
Reports/Documents
Physician Compensation: Shifting Incentives HealthLeaders Media
According to a recentIntelligence Report, 50% of health care executives and clinical leaders interviewed are now using patient satisfaction scores to guide physician incentive payments, while 57% use quality metrics.
Compiled Fact Sheet on Medical Home Data from the AAP The fact sheet is to inform key aspects of the pediatric medical home, and is a data fact sheet of summary statistics and facts from various AAP and public and proprietary sources. This resource is conceived not as a comprehensive data compendium, but rather as a living document, the content of which will continue to evolve as we get to different stages of discussions and implementations of the medical home.
Evaluating the Patient-Centered Medical Home: Potential and Limitations of Claims-Based Data National Academy for State Health Policy (NASHP) This State Health Policy Briefing summarizes the advantages and disadvantages of using claims-based data to evaluate patient-centered medical home initiatives and highlights pilots in Oklahoma and Rhode Island using claims-based data in part to evaluate their medical home programs. Understanding the potential uses and limitations of both claims data and other data sources that can aid evaluators will help states to design appropriate evaluative criteria for their medical home programs.
National Committee for Quality Assurance (NCQA) 2007 Report Coming Home To Better Healthcare. The report looks at the promise that the Patient-Centered Medical Home, a promising approach that seeks to strengthen the patient-physician relationship by replacing episodic care with coordinated care and a long-term healing relationship.
Health Resources and Services Administration (HRSA) Primary Care Safety Net Health Centers: Reflections on Success, 2002-2007. The report describes the history of safety net health center programs and the centers' role in providing a medical home. The unprecedented growth of the health centers during the period 2002-2007 is also discussed, along with issues related to the program's future in the following areas: work force, health information technology, emergency management, quality, performance measurement, and how connections are sustained between primary care associations, offices, and other partners.
The Center for Health Care Strategies (CHCS) offers resources for designing, purchasing, and monitoring publicly funded managed care. CHCS Informed Purchasing resources are housed under the following categories. The following tools/reports/information are available:
Mental Health Services for CSHCN in Commercial Managed Care. 1999-2001. As one of its national objectives for 2010, the Maternal and Child Health Bureau (MCHB) is striving to ensure that all Children with Special Health Care Needs have adequate insurance coverage, including coverage for mental health services.
Kaiser Report Examines Implications of Waiver Activity. 2005.
The Kaiser Commission on Medicaid and the Uninsured examines the policy implications of Medicaid Section 1115 waiver activity that has taken place in recent years. Since January 2001, 17 states have received approval for Section 1115 waivers, including Health Insurance Flexibility and Accountability (HIFA) waivers.
State Health Facts Online- Kaiser Family Foundation
This resource contains the latest state-level data on demographics, health, and health policy, including health coverage, access, financing, and state legislation. You can compare data for all states or look up an individual state profile.
Child Trends Data Bank: Trends in Health Care Coverage
The percentage of all children under age 18 with private health insurance coverage decreased from 71 percent in 2000 to 66 percent in 2003. During the same time period, the percentage of children with Medicaid increased from 20 percent to 26 percent.
Agency for Healthcare Research and Quality: Healthcare Cost & Utilization Project (HCUP)
HCUP is a family of health care databases and related software tools and products developed through a Federal-State-Industry partnership. HCUP databases bring together the data collection efforts of State data organizations, hospital associations, private data organizations, and the Federal government to create a national information resource of patient-level health care data.
Improving Children's Health: A Chartbook about the Roles of Medicaid and SCHIP, 2004
From the Center on Budget and Policy Priorities, this Chartbook summarizes numerous recent research findings about children who receive health insurance coverage from either Medicaid or the State Children's Health Insurance Program (SCHIP), the two primary publicly-funded health insurance programs for low-income children. The findings are drawn from a variety of recent sources, including the Centers for Disease Control and Prevention's 2001 National Health Interview Survey.
Wertz E. Children with Special Health Care Needs. Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:97-150.
Wertz E. Children with Special Health Care Needs Assisted by Technology. Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:151-175.
Wertz E. Interacting with parents and caregivers. Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:243-253.
Desch LW, Nickel RE. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Baltimore, MD: Pal H. Brookes Publishing Co; 2000: (800/638-3775).
Hack, C. Paradigms of Care for Children with Special Health Care Needs. Pediatric Annals. 1997;26:674-678.
Porter S, Haynie M, Biecle T, Caldwell T, Palfrey J. Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care. 2nd ed. Baltimore, MD: Paul H. Brookes Publishing Co; 1997 (800/638-3775).
Smith K, Layne M, Garell D. The Impact of Care Coordination on Children with Special Health Care Needs. Children’s Health Care. 1994;23:251-266.
Feeney D, Kaufman J. Caring for Children with Special Health Care Needs. Caring Magazine; Dec 1994:12-16.
Bradford R. Promoting Inter-agency Collaboration in Child Services. Child: Care, Health and Development; 1993:355-367.
Making Connections: Medicaid, CHIP, and Title V Working Together on State Medical Home Initiatives
National Academy for State Health Policy (NASHP) 2010 Several of the most promising state medical home initiatives have involved interagency collaboration. This report details productive practices and policy considerations for collaborative medical home building in four areas: laying foundations for partnership; working together to engage patients and families; engaging health care providers and practices; and building strong systems of care.
Promising Approaches for Improving the Interface between Primary and Specialty Pediatric Care This 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. This report 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.
MCHB and JSI Release Review of Care Coordination Activities of DSCSHN State Implementation Grantees
This report addresses all six of the Healthy People 2010 outcomes, through a survey of all Maternal and Child Health Bureau (MCHB) State Implementation grantees. The survey, developed by John Snow, Inc. as part of their contract with Division of Services for Children with Special Healthcare Needs (DSCSHN), 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 three-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 is testing the cost-effectiveness of paying for case management and disease management services under the Medicare Coordinated Care Demonstration. These coordinated care interventions supplement routine care for chronically ill beneficiaries. 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.
Coordinating Care for the Chronically Ill: How Do We Get There From Here?
In addition to exploring key aspects and results of innovative chronic care programs in six states, this report from the National Academy for State Health Policy also identifies key issues states must consider as they begin to implement chronic care programs and create important linkages between the medical and long term care/supportive services systems. Issues explored include creating a universal assessment tool, focusing programs on people with multiple chronic conditions, and creating successful physician involvement, among others.
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. Suzanne Bronheim, PhD. Senior Policy Associate. Georgetown University Center for Child and Human Development and Thomas Tonniges, MD. Hard copies may be ordered at www.ask.hrsa.gov/ or by calling 1-888-ASK-HRSA (275-4772). The document number is MCH00150.
American Academy of Pediatrics; Section on Endocrinology and Committee on Genetics, and American Thyroid Association Committee on Public Health. Newborn Screening for Congenital Hypothyroidism: Recommended Guidelines (RE9316). Pediatrics. 1993;91(6):1202-1209.
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 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.
Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC)
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.
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.
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.)
Powers L, Sowers J, Stevens T. An Exploratory, Randomized Study of the Impact of Mentoring on the Self-efficacy and Community-based Knowledge of Ddolescents with Severe Physical Challenges. Journal of Rehabilitation. 1995; 33-41.
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.
Werner P. Primary Care for Persons with Disabilities: Family Practice Perspective. American Journal of Physical Medicine and Rehabilitation. 1997;76(suppl):S21-24.
Whitehouse S, Paone M. Patients in Transition: Bridging the Health Care Gap from Youth to Adulthood. Contemporary Pediatrics (Canada). 1998;December:13-16.
American Academy of Pediatrics; Improving Transition for Adolescents with Special Health Care Needs From Pediatric to Adult-Centered Care. Pediatrics. 2002;110:1301-1335. To download the entire supplement, click here.
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.
How Disabled People Manage in the Workplace. Published for the Foundation by The Policy Press (ISBN 1 86134) 5224.
This report explores how disabled people get by in the workplace and looks at the nature of the support they require and receive.
Baumann AO, Deber RB, Silverman BE, Mallette, CM. Who cares? Who cures? The ongoing debate in the provision of health care. Journal of Advanced Nursing. 1998; 28(5): 1040-5.
Brock CD., Salinsky JV. Empathy: An Essential Skill for Understanding the Physician-patient Relationship in Clinical Practice. Family Medicine. 1993; 25(4): 245-8.
Buller MK, Buller DB. Physicians’ Communication Style and Patient Satisfaction. Journal of Health and Social Behavior. 1987; 28: 375-388.
Squier RW. A Model of Empathetic Understanding and Adherence to Treatment Regimens in Practitioner-patient Relationships. Social Science & Medicine. 1990; 30(3):325-39.
Children's Compassionate Care Act 2003 A Bill introduced in the senate of the United States on September 17, 2003, 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.
Sidelinger DE, Meyer D, Blaschke GS, Hametz P, Batista M, Salguero R, Reznik V. Communities as Teachers: Learning to Deliver Culturally Effective Care in Pediatrics. Pediatrics. 2005;115:1160 - 1164.
Joe JR, Malach RS. Families with Native American roots. In E. W. Lynch & M. J. Hanson (Eds)., Developing cross-cultural competence Baltimore, MD: Paul H. Brookes. 1998;127-164.
Harry B. Parental Visions of "una vida nor- mal/normal life": Cultural Variations on a Theme. In L. H. Meyer, H. S. Park, M. Grenot- Scheyer, 1. S. Schwartz, & B. Harry (Eds)., Making friends. Baltimore, MD: Paul H. Brookes. 1998;47-62.
Lecca P, Quervalu I, Nunes J, Gonzales F. Cultural Competency in Health, Social & Human Services: Directions for the 21st Century. Garland Publishing of Social Science. 1998;1085.
Garret, M. T., & Myers, 1. E. The Rule of Opposites: A Paradign for Counseling Native Americans. Journal of Multicultural Counseling and Development. 1996;24:89-104.
Lowenthal. B. Training Early Interventionists to Work with Culturally Diverse Families. Infant-Toddler Intervention. 1996;6(2):145-152.
Becerra, R., & lnglehart, A. Folk Medicine Use: Diverse Populations in a Metropolitan Area. Social Work in Health Care. 1995;21(4):37-51.
Dulan, J. R., & Blacher, J. African American Families, Religion, and Disability: A Conceptual Framework. American Journal on Mental Retardation. 1995; 33(4):226-238.
Harry, B., & Kalyanpur, M. Cultural Under-pinnings of Special Education: Implications for Professional Interactions with Culturally Diverse Families. Disability & Society. 1994; 9(2):145-165.
Heller T, Markwardt R, Rowitz L, Farber B. Adaptation of Hispanic Families to a Member with Mental Retardation. American Journal on Mental Retardation. 1994; 99(3), 289 300.
Chan, S. Families with Asian Roots. In E. W. Lynch & M. J. Hanson (Eds)., Developing Cross-cultural Competence: A guide for Working with Young Children and Their Families. Baltimore, MD: Paul H. Brookes. 1992;181-257.
Chao, C. M. The Inner Heart: Therapy with Southeast Asian Families. In L. A. Vargas, & J. D. Koss-Chioino (Eds)., Working with Cultures: Psychotherapeutic Interventions with Ethnic Minority Children and Adolescents. San Francisco: Jossey-Bass. 1992;157-181.
Willis, W. Families with African-American Roots. In E. W. Lynch & M.J. Hansen (Eds), Developing cross-cultural competence. Baltimore, MD: Paul H Brookes. 1992;121-150.
Hughes, S. Serving Culturally Diverse Families of Infants and Toddlers with Disabilities. Infant-Toddler Intervention. 1992; 2(3),169-177.
Harrison DF, Wodarski JS, Thyer BA. Cultural Diversity and Social Work Practice. Springfield, IL: Charles Thomas.1992; 981.
Atkin, K. Health, Illness, Disability and Black Minorities: A Speculative Critique of Pre- sent Day Discourse. Disability, Handicap & Society 1991;6,37-47.
Hmong Family. Hmong Family Prevents Forced Surgery on Son. Omaha World-Herald, January,1991;16.
Krajewski-Jarnie, E. Folk-Healing Among Mexican-American Families as a Consideration in the Delivery of Child Welfare and Child Health Care Services. Child Welfare. 1991;70(2):157-167.
Anderson, P.P. Issues in Serving Culturally Diverse Families of Young Children with Disabilities. Early Child Development and Care. 1989; 50, 167-188.
Tom, K. S. Echoes from Old China. Honolulu: University of Hawaii Press. 1989.
McCormack, G. L. Culture and Communication in the Treatment Planning for Occupation al Therapy with Minority Patients. Occupational Therapy in Health Care. 1987;49(i):17-36.
Kemp, C. Cambodian Refugee Health Care Beliefs and Practices. Journal of Community Mental Health Nursing. 1985;2:41-52.
National Survey of Physicians Part I: Doctors on Disparities in Medical Care
Selected findings from the Kaiser Family Foundation’s forthcoming National Survey of Physicians reveal that most physicians are aware of racial disparities in medical treatment for specific conditions, but they don’t believe it is a widespread problem. Kaiser Family Foundation, March 2002.
Reducing Health Disparities Through a Focus on Communities
The report presents evidence from research and practice of the key role that neighborhood factors play in determining health outcomes and explores the relationship between the communities in which people live and their health. PolicyLink, November 2002.
Unequal Treatment: Confronting Racialand Ethnic Disparities in Health Care
Report supporting the long-held perception that minorities tend to receive lower-quality health care than whites, even when insurance status, income, age, and severity of conditions are comparable. Institute of Medicine, March 2002.
Durham M, Madansky D, Lowell M, et al. Establishing Interpreter Services in Health Care Settings. Amherst, MA: Diversity Resources; 2001. Contact Diversity Resources at 1-800-865-5549.
Swabey L, Thiel de Bocanegra H, Gany F, and Morrison R. An Introduction to Medical Interpreting: A Trainer's Manual. NY Task Force on Immigrant Health, NY University School of Medicine, 1997.
2002 National Survey of Latinos
The Kaiser Foundation conducted a survey of Latino communities which noted that three in 10 Latinos cite communication problems with providers due to language barriers, including 12% who say this has been a major problem for them in the past year. The survey indicates that 18% of Latinos also have difficulty getting care because of their race or ethnic background. More than 20% of respondents said they have problems paying medical bills, and one-fifth have delayed seeking care due to costs.
Gill KM. Nurses’ Attitudes Toward Parent Participation: Personal and Professional Characteristics. Children's Health Care . 1987;15-3:149-151.
Hanson JL, Johnson BH, Jeppson ES, Thomas J, & Hall JH. Hospitals Moving Forward with Family-Centered Care. Institute for Family-Centered Care. 1994.
Hostler SL. Family-centered Care. Pediatrics Clinics of North America. 1991;38-6:1545-1560.
Johnson BH, Webster PD, et al, eds. Collaborative Design Planning. Bethesda, MD: The Institute for Family-Centered Care; 1999.
Johnson BH, Webster PD, et al, eds. Developing Family-Centered Vision, Mission and Philosophy of Care Statements. Bethesda, MD: The Institute for Family-Centered Care; 1999.
The Patient-Centered Medical Home: Strategies to Put Patients at the Center of Primary Care (2011) Agency for Healthcare Research and Quality (AHRQ)
This brief highlights opportunities to improve patient engagement in primary care and focuses on involvement at three levels: the engagement of patients and families in their own care, in quality improvement activities in the primary care practice, and in the development and implementation of policy and research related to the patient-centered medical home (PCMH).
All Parents Need Family Pediatrics (Winter 2006)
In 2003 the AAP Task Force on the Family produced a report in which they called for pediatricians to "modify their practice behaviors to promote good family functioning and effective parenting." Included were recommendations for pediatricians to screen for family circumstances that put children at risk and policies and programs that promote family functioning and family-oriented care. Underlying these recommendations was the principle that "to address effectively the health and well-being of children, pediatricians must approach the family not just the child as the patient."
"Voices from Home 2006", Family Voices
This 65-page report provides information on activities of the Family Voices (FV) network of family and youth leaders in the states. Also included are highlights from the FV project, Kids as Self Advocates (KASA), data summaries, and charts of FV state initiatives and partners.
Becoming a Resilient Family: Child Disability and the Family System (Spring 2005)
This monograph from the National Center on Accessibility addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become more resilient and healthy. It also includes recommended reading for both adult and child family members.
Patterns of Insurance Coverage Within Families with Children
Using the 1996 Medical Expenditure Panel Survey, this article examines patterns of health insurance within families with children, determining that 3.2 million families are uninsured and another 4.5 million families are only partially insured. January 2001
The State of Health Care Quality 2003. This report shows that the nation’s health care system is riddled with "quality gaps" that prevent millions of Americans from receiving "best practice" care. NCQA, September 2003.
Committee on Evaluation of Children's Health, National Research Council. Children's Health, the Nation's Wealth: Assessing and Improving Child Health. June 24, 2004. This report provides a detailed examination of the information about children's health that is needed to help policy makers and program providers at the federal, state, and local levels.
Committee on Identifying Priority Areas for Quality Improvement. Priority Areas for National Action: Transforming Health Care Quality In this report, the committee recommends a set of 20 priority areas that the U.S. Department of Health and Human Services (DHHS) and other groups in the public and private sectors should focus on to improve the quality of health care delivered to all Americans. National Academy Press, March 2003.
Committee on Rapid Advance Demonstration Projects: Health Care Finance and Delivery Systems. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Focuses on redesigning primary care and care for those with chronic conditions, creating an information and communications technology infrastructure, making health insurance coverage available and affordable at the state level, and reforming malpractice to make it patient-centered, safety focused and nonjudicial. National Academy Press, March 2002.
Committee on Quality of Health Care in America. To Err is Human: Building a Safer Health System. This document is the first in a series of publications from the Quality of Health Care in America. Institute of Medicine, 1999.
Cubanski J and Kline J. Improving Health Care Quality: Can Federal Efforts Lead the Way? This issue brief addresses proposals to improve health care quality. Commonwealth Fund, April 2002.
Davis K. The Quality of American Health: Can We Do More? President's Message Report on current state of the quality of care debate. Commonwealth Fund, April 2000.
Davis K, Schoenbaum SC, Collins KS, Tenney K, Hughes DL, and Audet AJ. Room for Improvement: Patients Report on the Quality of Their Health Care. Report reveals that an estimated 8.1 million households have experienced a medical or prescription drug error that turned out to be very serious. The Commonwealth Fund, April 2002.
The National Healthcare Quality Report. The report includes a broad set of performance measures that can serve as baseline views of the quality of health care. The report presents data on the quality of services for seven clinical conditions, including cancer, diabetes, end-stage renal disease, heart disease, HIV and AIDS, mental health, and respiratory disease. Agency for Healthcare Research and Quality (AHRQ), December 2003.
Children and Youth with Special Health Care Needs (CYSHCN)
For additional articles regarding access to care for children and youth with special health care needs, please review the Access To Care section of the Bibliography. Additional articles on coordination of care for children and youth with special needs are available in the Continuous, Comprehensive, Coordinated Care section of the Bibliography.
Journal of Vocational Rehabilitation: Special Issue on Youth With Disabilities The September issue of the Journal of Vocational Rehabilitation contains six articles on youth with disabilities. The articles, by researchers from Mathematica Policy Research, TransCen Inc., and the Social Security Administration, explore challenges and related policy responses facing youth receiving Supplemental Security Income. Findings from the articles include:
The public cost of child dependence on SSI is more than $400 million a month-in December 2007, approximately 721,000 youth ages 13 to 21 received SSI benefits.
SSI youth are roughly equally divided by primary impairment into three groups: mental retardation, mental and behavioral disorders, and physical disabilities. These groups take different paths as they move toward adulthood-for example, 40 percent of those with mental impairments end up involved with the juvenile justice system.
At age 18, many SSI youth are not working and not in school. A major concern is that some, particularly those with mental disorders other than mental retardation, might not be sufficiently prepared for life without SSI.
Employment rates of former SSI youth after age 18 are low relative to other young adults.
Parents of these youth face difficult trade-offs between providing care for their children and entering the work place. Parents of youth with very severe health conditions have particularly limited opportunities to enter the workforce.
Intervention strategies that emphasize the importance of work could potentially improve the outcomes of these youth and reduce long-term program dependency.
Nickel RE, Desch LW. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Baltimore, MD: Paul H. Brookes Publishing Co.
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.
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).
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. Suzanne Bronheim, PhD. Senior Policy Associate. Georgetown University Center for Child and Human Development and Thomas Tonniges, MD. Hard copies may be ordered at www.ask.hrsa.gov/ or by calling 1-888-ASK-HRSA (275-4772). The document number is MCH00150.
President's New Freedom Initiative
Fulfilling America's Promise to Americans with Disabilities
The New Freedom Initiative is a comprehensive plan that represents an important step in working to ensure that all Americans have the opportunity to learn and develop skills,engage in productive work, make choices about their daily lives and participate fully in community life. The Initiative's goals are to:
Increase access to assistive and universally designed technologies;
Expand educational opportunities;
Promote home ownership;
Integrate Americans with disabilities into the workforce;
. Chicago, IL: ACTA Publications; 1993.
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.