AAP/AAFRP/ACP /AIM - A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs
pediatrics.aappublications.org/cgi/reprint/110/6/S1/1304.pdf

AAP News Brief - As technology allows more children born with chronic and disabling conditions to reach adulthood, these children deserve care that is high quality, developmentally appropriate and uninterrupted as they move from adolescence into adulthood. The AAP, the American Academy of Family Physicians, and the American College of Physicians - American Society of Internal Medicine call on all physicians to understand the rationale for transition from child-oriented to adult-oriented health care; to have the knowledge and skills to facilitate that process; and to know if, how and when transfer of care is indicated.

NOTE: This consensus statement is part of a larger supplement in the December 2002 issue of Pediatrics. The supplement also includes a series of commissioned papers on various aspects of healthcare transitions for young adults with special needs.

AAP - The Role of the Pediatrician in Transitioning Children and Adolescents With Developmental Disabilities and Chronic Illnesses From School to Work or College (RE9847) 2000
www.aap.org/policy/re9847.html
The transition from childhood to adulthood is a prolonged, variable process in children with special health care needs. Prevocational counseling begins in early childhood or at the time of diagnosis. Special education and vocational education are strengthened when there are strong ongoing family-professional partnerships. Federal legislation and current educational best practices shape and guide the vocational assessment process and transition outcomes. The pediatrician can bring many strengths to this transition process, including a longitudinal relationship with the family that offers multiple opportunities for providing anticipatory guidance and constructive interventions.

AHTP - Deciding to Transfer the Child From Pediatric to Age-appropriate Adult Care
depts.washington.edu/healthtr/Providers/transfer.htm
Adolescent Health Transition Project - Information For Health Care Providers and Educators
All people are entitled to receive health care in age-appropriate settings which promote autonomy and enrich social growth. Most adolescents with chronic illnesses or disabilities have much to gain from a timely move to age-appropriate health care or from receiving age-appropriate care from their family practitioner. Health care providers should advocate self-empowerment and full societal participation for their young adult clients. This self-reliance includes obtaining health care typically provided in an adult setting.

AMERICAN ACADEMY OF FAMILY PHYSICIANS
Family Practice Management 11(4):34-38, 2004.
Recommendations for the Future of Family Medicine by Jennifer Bush
www.annfammed.org
Two years ago, leaders of the seven national family medicine organizations embarked on a serious re-examination of the specialty and the U.S. health care system when they initiated the Future of Family Medicine (FFM) project. The group's goal was ambitious: to develop "strategies to renew and transform the discipline of family medicine to meet the needs of patients in a changing health care environment." Now, work on the first stage of the project is complete. The result is a diverse examination of the specialty and 10 strategic recommendations that will serve as a guide for transforming the discipline.

The recommendations include the following:

• A new model of practice that is locally adaptable, builds on the core values of family medicine, stresses a team approach and is congruent with the six aims of high quality health care identified by the Institute of Medicine's Chasm Report[1] (i.e., safe, timely, effective, efficient, equitable and patient-centered);
• A more functionally designed office practice that incorporates advanced information technology, including just-in-time information systems that allow physicians to retrieve the best evidence at the point of care, and a standardized electronic health record (EHR) that integrates easily into daily practice and is affordable to most family physicians;
• A model of family medicine residency education that is more flexible and emphasizes cultural proficiency, quality improvement, informatics, evidence-based medicine, practice-based research and the biopsychosocial model of care;
• A comprehensive lifelong learning program for family physicians based on continuous personal, professional and clinical practice assessment and improvement;
• New reimbursement models that sustain and promote family medicine and primary care practices.

A Position paper of the Society For Adolescent Medicine Journal of Adolescent Health: 1993; 14:570-576 Transition from Child-Centered to Adult Health-Care Systems for Adolescents with Chronic Conditions:
www.adolescenthealth.org/html/transition_.html
A Position Paper of the Society for Adolescent Medicine (SAM) Transition is defined in this paper as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems. Transition from such child-centered to adult health care systems is important for all teenagers, healthy or ill. The purpose of this paper, however, is to address transition issues faced by the teenagers and young adults with significant chronic illness or disability.

BRIGHAM AND WOMEN'S HOSPITAL
Joint Center for Sickle Cell and Thalassemic Disorders
Transition of Patients with Sickle Cell Disease from Pediatric to Adult Care sickle.bwh.harvard.edu/transition.HTML
Article by Ken Bridges, Director, Joint Center for Sickle Cell and Thalassemic Disorders
Transition is a constant element of life. The process begins at birth and ends at death. Some transitions (for instance, becoming a parent) are more difficult than others (e.g., learning to drive). Some transitions, such as school graduations, are abrupt and marked by ceremony. Other transitions are gradual with less well-defined boundaries (becoming middle-aged, for instance). People with chronic illness face the same transitions. Additional issues arise that most healthy people never encounter, however. Children with chronic illness that stretches into adulthood face the same challenges of adolescence as their healthy counterparts. The challenges are more complex and intertwined with other formidable tasks, such as finding new care providers and institutions. People with sickle cell disease often need help and guidance as they cross life's stream that separates childhood and adulthood.

Cascade - Making the Transition from Paediatric to Adult Care
renaluk.netfirms.com/DOCS/Artic1.html
Article written by London physician that discusses transition of care.

E-Pediatric News - How to Move a Patient to Adult Care
www.epediatricnews.com/
e-Pediatric News -Helping children with chronic and disabling conditions make the transition from pediatric to adult medical care requires careful planning that ideally begins years in advance. These children are forming an increasing part of many pediatric practices, and, thanks to advances in medical care, they are starting to form a growing part of adult-centered practices as well. Ninety percent of all children with disabilities now live beyond the age of 20 years. These children may have deafness, blindness, attention-deficit hyperactivity disorder, a learning disorder, or a rare systemic disorder. This transition process presents several important challenges to the pediatrician.

HRTW-MA - MASS. Initiative for Youth With Disabilities (Youth Transition)
Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers (2000)
www.communityinclusion.org/transition/
This 80-page resource guide is written for health care providers who care for children with special health care needs. The guide gives information, resources and strategies needed by providers to support adolescents and their families to meet the challenges of transition.

WAISMAN CENTER , UNIVERSITY OF WISCONSIN
HEALTHY & READY TO WORK WISCONSIN
Health Curriculum Transition to Adult Health Care: A Training Guide (Two Parts)
 www.waisman.wisc.edu/hrtw/Adult_Teen.pdf

 [pdf]
This training guide is intended to serve as a framework for anyone interested in helping young people with special health care needs and their parents prepare for the transition to adult health care. Training has been divided into two parts: Part One, aimed at parents of children with special needs, and Part Two, aimed at the young people themselves. (94 pp, 2005)

JOURNAL OF PEDIATRICS
Transition to Adulthood: The Important Role of the Pediatrician
Donna Gore Olsen, BA and Nancy L. Swigonski, MD, MPH
www.pediatrics.org/cgi/content/full/113/3/e159
ABSTRACT. This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s). The article consists of 3 parts. The first part is an introduction giving an overview of the importance of transition. "Developing a Life (not Illness) Plan: Begin With the End in Mind," emphasizes that no matter how challenging the disability or compromising the chronic illness, we owe it to our children to take the risk of thinking about the future and beginning to help them to develop a life (not illness) plan. The third part, "With a Little Help from My Friends," looks at how linking families with other parents, young adults, and adults living with disabilities and serious chronic illness can be a source of information to both families and physicians as they plan for the future. Article appeared in PEDIATRICS 2004;113:e159-e162.

JOURNAL OF PEDIATRICS
Unmet Need for Routine and Specialty Care: Data From the National
Survey of Children With Special Health Care Needs
www.pediatrics.org/cgi/content/full/113/2/e109
Compared with previous reports of the general pediatric population, CSHCN have higher levels of unmet need for medical services. Our regression results emphasize that children vulnerable because of their social circumstances (eg, poverty, etc) have significantly greater odds of having unmet need for routine and specialty physician care. Furthermore, our findings highlight the importance of insurance coverage in ensuring access to needed routine and specialty medical services. Article appeared in PEDIATRICS Vol. 113 No. 2 February 2004 e109.

NCCC -Youth & Family Perspectives on Transition
www.georgetown.edu/research/gucdc/nccc/transition.html
How to incorporate cultural competence in transitioning to adulthood for youth with special health needs.

SDAA - Transition between Pediatric and Adult Care - Outpatient Management Issues in Sickle Cell Disease
www.sicklecelldisease.org/
Sickle Cell Disease Association of America - As recently as the 1960's, sickle cell disease was considered a issue of childhood care, since relatively few patients survived very far into adulthood. No cure for the disorders has been developed. However, improvements in general medical care and the development of palliative treatments have extended life expectancy well into adulthood for these patients. The general medical services of most adult hospitals lack comprehensive care programs for patients with sickle cell disease. In contrast, the medical services available through pediatric departments are generally much better organized. As a result, patients frequently continue in pediatric clinics far into adulthood. Often, adults experience problems, such as hypertension or pregnancy, that are better managed by internists who encounter them regularly. Without an infrastructure to handle their sickle cell disease, patients are naturally reluctant to transfer their care to internists

ICAAP - Preparing for Adulthood
internet.dscc.uic.edu/forms/transition.pdf
The Illinois Chapter of the American Academy of Pediatrics (ICAAP) has developed an informational brochure titled "Preparing for the Future: Transition to Adulthood" to help teenagers and their families prepare for their future during the transition process to adulthood. The brochure outlines the school, medical, financial and legal issues that should be considered and addressed.