Annotation: This publication summarizes key findings and themes from interviews about the Children's Health Insurance Program (CHIP) conducted in 1998 in 12 states: Alabama, California, Colorado, Connecticut, Florida, Illinois, New Mexico, New York, North Carolina, Massachusetts, Utah, and Wisconsin. Findings from the interviews are divided into nine sections, each dealing with major issues for adolescents under CHIP. These sections are benefit packages, outreach and enrollment, assuring access to care, confidentiality, adolescents with special needs, school-based/school-linked health centers, quality assurance, evaluation, and linkages to other health and social service programs. Appendices include names and titles of interview respondents, respondents priority issues for adolescence, summary of CHIP programs/plans for surveyed states, and resources on CHIP and adolescents. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Contact Phone: (800) 434-4MCH Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHL104.

Keywords: Access to health care, Adolescent health, Adolescents, Adolescents with special health care needs, Alabama, California, Children, Colorado, Confidentiality, Connecticut, Florida, Illinois, Interviews, Massachusetts, New Mexico, New York, North Carolina, Outreach, Reports, School linked programs, Social Security Act, Title XXI, State health insurance programs, Title V programs, Utah, Wisconsin

Annotation: This manual is intended as a guide for health professionals to establish a new health care delivery system for transitioning adolescents with chronic illness to adult health care. Health professionals learn about eight objectives: exploring one's commitment to transition, identification of initial partners; securing institutional support; assuring economic feasibility, developing a structure, developing a successful partnership, and achieving a successful transfer of patients. A self-assessment form is included.

Contact: Georgetown University Center for Child and Human Development, Georgetown University Box 571485, 3300 Whitehaven Street, N.W., Suite 3300, Washington, DC 20007-3935, Telephone: (202)687-5503 Secondary Telephone: (202)687-5000 Fax: (202) 687-8899 E-mail: gucdc@georgetown.edu Web Site: http://www.gucchd.georgetown.edu/index.html Price unknown.

Keywords: Access to health care, Adolescents with special health care needs, Chronic illnesses and disabilities, Health services, Special health care needs, Transition planning, Transitions, Young adults

Annotation: This report provides profiles of states that have made innovative changes in their service delivery systems for people with developmental disabilities. These changes increase the number of community-based placements and reduce institutional placements. Information was gathered from interviews with state disability service directors, academics, advocates and state policymakers. Topics covered in the interviews were (1) state progress in deinstitutionalization, (2) the percentage of disabled people who live in community settings and state hospitals, (3) the kinds of medical and social services needed by people with disabilities and service gaps, if any, (4) models of care that could be considered best practices for states, and (5) costs and funding associated with care for this population.

Contact: Forum for State Health Policy Leadership, National Conference of State Legislatures, 444 North Capitol Street, N.W., Suite 515, Washington, DC 20001, Telephone: (202) 624-5400 Fax: (202) 737-1069 E-mail: donna.folkemer@ncsl.org Web Site: http://www.ncsl.org/programs/health/forum/ Price unknown.

Keywords: Adolescents with developmental disabilities, Children with developmental disabilities, Community based services, Community programs, Deinstitutionalization, Developmental disabilities, Health care costs, Health care financing, Model programs, Reports, Service delivery, Statistics

Annotation: This report discusses a longitudinal study designed to investigate both the health and development of children with early developmental delays or disabilities, and the adaptation of their families to the challenges of parenting such a child, focusing on mid-adolescence. The report includes an executive summary, an outline of the research objectives, study design and methods, findings, and recommendations. Also included is a list of early intervention collaborative study publications, a review of the literature, and statistical data in tables is provided throughout the report. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.info Available at no charge from the Web site.

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Keywords: Adolescents, Children with special health care needs, Developmental disabilities, Early intervention, Family characteristics, Final reports, Parenting skills, Research

Annotation: This videotape describes how people with disabilities can take advantage of a work incentive program offered by the Social Security Administration called PASS, the Plan for Achieving Self-Support. The videotape explains the PASS program, which allows those with disabilities to earn money for education, starting a business, job training, or for work-related items (such as a wheelchair, computer, or van), while still receiving supplemental social security income. Through interviews, PASS program participants describe the pursuit of their goals and information is provided about the requirements of the program, how to find application materials, and application procedures. [Funded by the Maternal and Child Health Bureau and the U.S. Social Security Administration]

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Fax: (352) 265-7221 Web Site: http://www.ichp.edu Available at no charge.

Keywords: Audiovisual materials, Federal programs, Program descriptions, Supported employment, Transition to independent living, Videotapes

Annotation: This fact sheet presents new national data on the transition support services offered in pediatric practices to adolescents with special health care needs and the barriers affecting the availability of such services. Topics include methodology, recommended age for transition planning, transition support services offered in pediatric practices, and barriers impeding transition support.

Contact: National Alliance to Advance Adolescent Health, 750 17th Street, N.W., Suite 1100, Washington, DC 20006, Telephone: (202) 223-1500 Fax: (202) 496-9067 E-mail: info@thenationalalliance.org Web Site: http://www.thenationalalliance.org/ Available at no charge from the Web site.

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Keywords: Access to health care, Adolescent health services, Adolescents with special health care needs, Family support services, Pediatric care, Services, Transitions

Annotation: This workbook, which is intended for young people with disabilities, presents information that readers can use to understand their disability, explain their disability to others, and decide whether and how to disclose their disability. The workbook is divided into eight units: (1) self-determination -- the big picture, (2) disclosure -- what is it and why is it so important?, (3) weighing the advantages and disadvantages of disclosure, (4) rights and responsibilities under law, (5) acommodations, (6) postsecondary disclosure, (7) disclosure on the job, and (8) disclosure in social and community settings. Each unit contains a general statement of purpose, useful terminology, a discussion section, and activities to allow the reader to understand and practice the ideas presented throughout the unit. The workbook also includes a glossary.

Contact: National Collaborative on Workforce and Disability for Youth, c/o Institute for Educational Leadership, 4455 Connecticut Avenue, N.W., Stuie 310, Washington, DC 20008, Telephone: (877) 871-0744 Secondary Telephone: (877) 871-0665 Web Site: http://www.ncwd-youth.info Available at no charge from the Web site.

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Keywords: Adolescents with developmental disabilities, Adolescents with special health care needs, Civil rights, Consumer education materials, Decision making, Disabilities, Education, Individual responsibility, Informed consent, Legal responsibility, Work force, Workplace, Young adults, Youth

Annotation: This conference Web site provides information and materials used in the forum on transitioning from adolescence to adulthood held in Washington, DC, January 10, 2006. Topics include the transition from adolescence to adulthood and how unique problems exist for health care access and delivery, preventive programs, and the needs of special populations such as children and adolescents with special health care needs, chronic conditions, and racial disparities. Contents include the conference agenda, speaker biographies, presentation slides (in. pdf format), information about the sponsoring and funding agencies, a list of additional resources, and an evaluation form. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Health Care Management Research and Educational Foundation, 1225 19th Street, N.W., Suite 710, Washington, DC 20036-2454, Telephone: (202) 296-4426 Fax: (202) 296-4319 E-mail: nihcm@nihcm.org Web Site: http://www.nihcm.org Available at no charge from the Web site.

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Keywords: Access to health care, Adolescent health, Adolescents with special health care needs, Children with special health care needs, Conferences, Health services delivery, Racial factors, Transitions

Annotation: These materials were presented at a forum for health services professionals. The focus of the forum was chronically ill children and adolescents. The forum was divided into five sessions each with a specific focus: (1) the definition, scope and factors related to chronic disease in children and adolescents, (2) perspectives of those who live with and care for children who have chronic diseases, (3) tools, research and evaluation initiatives to improve the provision of health care to children with chronic diseases, (4) model programs addressing children with chronic health conditions, and (5) specific chronic illnesses in children and adolescents and their linkages with nutrition. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Health Care Management Research and Educational Foundation, 1225 19th Street, N.W., Suite 710, Washington, DC 20036-2454, Telephone: (202) 296-4426 Fax: (202) 296-4319 E-mail: nihcm@nihcm.org Web Site: http://www.nihcm.org Available at no charge.

Keywords: Access to health care, Adolescents with special health care needs, Asthma, Children with special health care needs, Chronic illnesses and disabilities, Diabetes, Health insurance, Healthy People 2010, Maternal and Child Health Bureau, Model programs, Nutrition, Research, Social Security Act, Title V

Annotation: This brochure describes a program to prepare adolescents for transition to adult health care services so they can become self-advocates in the health care system. Services of the program include individual assistance, workshops, and written materials. A 15-minute videotape with the same title is available for rental or purchase; it is designed to introduce the subject of transition in health care to adolescents, parents, and professionals. [Funded by the Maternal and Child Health Bureau]

Contact: PACER Center, 8161 Normandale Boulevard, Bloomington, MN 55437-1044, Telephone: (952) 838-9000 Secondary Telephone: (952) 838-0190 Contact Phone: (612) 827-2966 Fax: (952) 838-0199 E-mail: pacer@pacer.org Web Site: http://www.pacer.org Available at no charge.

Keywords: Adolescents with special health care needs, Audiovisual materials, Transitions, Videotapes

Annotation: This book for pediatric health professionals is a compilation of facts about adolescents with special health care needs and what they need as they move toward adulthood. It contains handouts that can be copied and given to families and adolescents. Each of the four topic areas, health, education, employment, and recreation, contains the following elements: (1) background information and issues; (2) a family fact sheet; and (3) a "taking charge" sheet. The booklet also includes a checklist and timeline for health professionals, a list of community resources, additional tools and information, a summary of important laws, and a glossary of terms. [Funded in part by the Maternal and Child Health Bureau]

Contact: Institute for Community Inclusion, University of Massachusetts, Boston, 100 Morrissey Boulevard, Boston, MA 02125, Telephone: (617) 287-4300 Secondary Telephone: (617) 287-4350 Fax: (617) 287-4352 E-mail: ici@umb.edu Web Site: http://www.communityinclusion.org Available at no charge from the Web site.

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Keywords: Adolescents, Children with special health care needs, Educational materials, Resources for professionals, Special health care services, Transition planning, Transition to independent living

Annotation: This book is written for families of adolescents with special health care needs to aid in preparing for the transition of the child into adulthood. Four major areas of adulthood are covered: health care, education, employment, and recreation. Each chapter contains a family sheet that explains important issues and lists practical steps that should be addressed in adolescence. Additional resources provided are checklists, information lists, and guides for transition areas. References, suggested readings, a summary of laws related to adolescent transitioning, and a glossary are also provided. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Community Inclusion, University of Massachusetts, Boston, 100 Morrissey Boulevard, Boston, MA 02125, Telephone: (617) 287-4300 Secondary Telephone: (617) 287-4350 Fax: (617) 287-4352 E-mail: ici@umb.edu Web Site: http://www.communityinclusion.org Available at no charge from the Web site.

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Keywords: Adolescents with special health care needs, Consumer education materials, Special health care services, Transition planning

Annotation: This newsletter contains articles of interest to families whose children or adolescents have special health needs and to the health professionals and others who provide services to them. The articles focus on topics such as assuring that these children and adolescents have access to health care, data collection, public policy issues related to their health care, helping youth live independently, providing health care to adolescents with special health needs, transition programs, gathering demographic data on this population, and resilience and coping. From 1993 to 1994 the newsletter was published as "Children's Health Issues;" from 1995 to 1996 it was called "Children's and Youth's Health Issues." It was formerly published by University of Minnesota Institute for Health and Disability.

Keywords: Adolescents with special health care needs, Children with special health care needs, Chronic illnesses and disabilities, Newsletters

Annotation: This book focuses on the transition of adolescents and young adults with disabilities who are exiting the school system and entering adult life. It provides assessment tools for those beginning the transition process, as well as for those whose job or real-life role places them in a supporting role (e.g., family, school personnel, friends, adult agency staff). Chapter topics include: (1) assessments and the school experience, (2) person-centered planning, (3) self-determined assessment, (4) the three c's of family involvement, (5) informal assessment procedures, (6) measuring what's important: using alternative assessments, (7) assessing individual needs for assistive technology, (8) vocational and career assessment, (9) transition services, and (10) putting transition plans into action. References are provided at the end of each chapter. The book concludes with an index.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: custserv@brookespublishing.com Web Site: http://www.pbrookes.com $27.95, plus shipping and handling of $4.64. Document Number: ISBN 1-55766-570-2.

Keywords: Adolescents with developmental disabilities, Adolescents with special health care needs, Assessment, Assistive devices, Careers, Case studies, Families, High school students, Parent participation, School to work transitions, Transition planning, Transitions, Vocational education

Annotation: The purpose of this monograph is to enable clinicians to assist adolescents living with HIV to adhere to the complex regimens of highly active antiretroviral therapies (HAART). It outlines a series of strategies and techniques with which clinicians can tailor antiretroviral regimens to adolescents' individual requirements, address the obstacles to adherence in their lives, provide them with opportunities to practice medicine-taking behaviors, and give them continuing support when they finally initiate HAART. Chapter topics include: creating the context for adherence; the five stages of behavioral change -- precontemplation, contemplation, preparation, action and maintenance, and relapse; and recommendations for assisting with adherence to HAART. A list of references as well as a selected bibliography are included. The appendices provide a summary of the principles of HAART; medical treatment with HAART; sample HAART regimens; and contacts for the Adolescent Medicine HIV/AIDS Research Network. The monograph was written for the Adolescent Medicine HIV/AIDS Research Network.

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. HAB00190.

Keywords: Adolescent behaviors, Adolescent health programs, Adolescents, HIV, Patient care management, Therapeutics

Annotation: This paper describes recent changes in the Supplemental Security Income (SSI) program affecting adolescents, what SSI work incentives are available to them, how they can maintain access to quality health care and benefits during their transition years, and key issues to consider during transition planning. This is the first of a series of working papers aimed at assisting service providers and families to ensure successful transitions to work and independence for youth with disabilities and chronic illnesses. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Contact Phone: (888) 433-1851 Fax: (352) 265-7221 Contact E-mail: ICHP@qm.server.ufl.edu Web Site: http://www.ichp.edu Available at no charge. Document Number: HRSA Info. Ctr. MCHM069, ISBN 0-9700909-0-0.

Keywords: Access to health care, Adolescents with developmental disabilities, Adolescents with special health care needs, Supplemental security income, Transition planning, Transitions

Annotation: This report discusses adolescent pregnancy prevention within the subgroup of youth with disabilities. Topics covered include: (1) who are youth with disability; (2) what are their risk factors for adolescent pregnancy; (3) what are their unique needs; (4) what accommodations are necessary; (5) what are next steps; and (6) where are the best programs and resources. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM070; ISBN 0-9700909-3-5.

Keywords: Adolescent pregnancy, Disabilities, Prevention, Risk factors, Special health care needs, Youth

Annotation: This manual is designed to assist in training paraprofessional personnel in supportive work with adults with developmental disabilities, with the objective of assisting these adults to work in the private sector, and to enjoy the dignity and fulfillment of employment and independent community living. The manual covers training in the 3 main areas of support services, job development and placement, job coaching, and case management. The training manual is presented in a workbook format.

Contact: Focus, Inc., 2917 King Street, Suite C, Jonesboro, AR 72401, Telephone: (501) 935-2750

Keywords: Adults, Cognitive disorders, Developmental disabilities, Employment, Habilitation, Special education, Special health care needs, Training, Transition to independent living

Annotation: This report summarizes the experiences and concerns of 6 Massachusetts adolescents and young adults with special health care needs (ages 11 to 22) and 30 family members. The study seeks to understand the issues and needs that young adults and their families face during the transition from school to adult life. The results of six focus groups and three detailed case studies illustrate the variety of challenges and solutions that individuals with special health care needs and their families experience. [Funded by the Maternal and Child Health Bureau]

Contact: Massachusetts Department of Public Health, 250 Washington Street, Boston, MA 02108, Telephone: (617) 624-6000 Secondary Telephone: (617) 624-6001 Contact Phone: (617) 624-5955 Contact E-mail: nicole.roos@state.ma.us Web Site: http://www.mass.gov/dph/ Available at no charge.

Keywords: Adolescents with special health care needs, Case studies, Families, Focus groups, Massachusetts, Reports, Transition to independent living, Young adults