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Strengthen the Evidence for Maternal and Child Health Programs

Adolescents with Special Health Care Needs Bibliography

Adolescents with Special Health Care Needs

Bibliography of Materials from MCHLine®

This bibliography of 16 items is drawn from MCHLine®, the MCH Digital Library online catalog. It covers selected materials published in the last ten years and includes topics of relevance to this population such as skill training, sexuality, and the transition to adult life. It does not include information on specific disabilities.

The MCH Digital Library focuses on publications from federal and state agencies, from grantees of federal and state agencies, and from professional and voluntary organizations. It contains unique materials on the history of maternal and child health in the United States, policy papers, reports, conference proceedings, manuals, survey instruments, guidelines, and curricula. The library does not collect materials on clinical medicine. Consumer health materials and commercially published materials are collected very selectively.

Displaying 16 records.

D.C. Resource Center for Children with Special Health Care Needs. n.d.. Sexuality information resource list. Washington, DC: D.C. Resource Center for Children with Special Health Care Needs, 3 pp.

Annotation: This fact sheet lists resources on sexuality education, education curricula, health conditions and disabilities, online learning, educators and counselors, and national resources related to sexuality and children and adults with disabilities. Resources also cover parenting with a disability, reproductive health, sexual violence, and screening for abuse or violence.

Contact: D.C. Resource Center for Children with Special Health Care Needs, Washington, DC Web Site: http://dccshcn.org Available from the website.

Keywords: Adolescents with special health care needs, Adults, Children with special health care needs, Disabilities, Sexuality education

Puritz A, Carmody MA. n.d.. Sexuality and children and youth with special health care needs: Information and education. Washington, DC: D.C. Resource Center for Children with Special Health Care Needs, 3 pp. (Fact sheet)

Antosh AA, Blair M, Edwards K, Goode T, Hewitt A, Izzo M, Johnson DR, Raynor O, Riddle I, Shanley JL, Walker Jr R, WehmeyerM. 2013. A collaborative interagency, interdisciplinary approach to transition from adolescence to adulthood. Silver Spring, MD: Association of University Centers on Disabilities, 56 pp.

Annotation: This paper, which is intended for faculty, staff, trainees, individuals with disabilities and their families, policymakers, and partners in disability organizations and agencies aims to promote a dialogue among key stakeholders and to facilitate their engagement in pursuing a comprehensive, coordinated, supportive, and successful transition process for adolescents with disabilities who are transitioning to young adulthood. The paper discusses self-determination; perspectives on transition; viewing transition through a cultural lens; the importance of interagency collaboration; and recommendations and policy implications.

Contact: Association of University Centers on Disabilities, 1010 Wayne Avenue, Suite 1000, Silver Spring, MD 20910, Telephone: (301) 588-8252 Fax: (301) 588-2842 E-mail: aucdinfo@aucd.org Web Site: http://www.aucd.org Available from the website.

Keywords: Adolescents with special health care needs, Chronic illnesses and disabilities, Collaboration, Cultural competence, Public policy, Transition planning, Transition to independent living, Young adults

Carmody MA. 2012. Resource list: Sexuality education for persons with developmental disabilities. Washington, DC: D.C. Resource Center for Children with Special Health Care Needs, 6 pp.

Annotation: This resource list includes information on assessment programs and curriculum guides; guides and problem-solvers; HIV and AIDS; films, slides, and videos; sexual abuse prevention materials; anatomically correct dolls and other aids; and other materials.

Contact: D.C. Resource Center for Children with Special Health Care Needs, Washington, DC Web Site: http://dccshcn.org Available from the website.

Keywords: Adolescents with special health care needs, Adults, Children with special health care needs, Disabilities, Sexuality education

Arjun L, Hope C, Guyer J, Alker J. 2011. Medicaid and its role for children and youth with special health care needs (CYSHCN): A family perspective. Washington, DC: Georgetown University Health Policy Institute, Center for Children and Families, 14 pp.

Annotation: This issue brief provides data on the number of children and youth with special health care needs (CYSHCN) enrolled in Medicaid and outlines how they qualify for coverage. It presents findings from case studies collected by Family Voices and interviews with families of CYSHCN about Medicaid’s role in their lives (conducted by the Georgetown University Health Policy Institute Center for Children and Families). It includes snapshots of families around the country whose children with special needs receive Medicaid services and a table listing the upper income eligibility level for CYSHCN coverage in all 50 states. The brief concludes with a discussion of policy implications and recommendations.

Contact: Georgetown University Health Policy Institute, Center for Children and Families, 3300 Whitehaven Street, N.W., Suite 5000, Box 571444, Washington, DC 20057-1485, Telephone: (202) 687-0880 Fax: (202) 687-3110 E-mail: childhealth@georgetown.edu Web Site: http://ccf.georgetown.edu Available from the website.

Keywords: Adolescents, Children with special health care needs, Data, Health care financing, Medicaid, Policy development, State children', State programs, Statistics, Youth, s health insurance

Axley DL, Zendell AL. 2011. Sexuality across the lifespan for children and adolescents with developmental disabilities. (Rev. ed.). Tallahassee, FL: Florida Disabilities Development Council, 114 pp.

Annotation: This instructional manual is designed to help parents and caregivers assist individuals with intellectual or developmental disabilities in their explorations of self and sexuality. The manual presents hints for family members, discusses adapting for different learning styles, and offers tips. The manual also offers ideas for addressing the following topics: understanding the differences between males and females (grades K-5), changes in the body (grades 4-8), becoming an adult (grades 9-12), beginning social skills (grades K-8 and ongoing), advanced social skills (grades 6-12 as ready), dating, and sexual or physical abuse. A companion resource guide for educators is also available.It is available in English and Spanish.

Contact: Florida Disabilities Development Council, 124 Marriott Drive, Suite 203, Tallahassee, FL 32301-2981, Telephone: (850) 488-4180 Secondary Telephone: (850) 488-0956 Fax: (850) 922-6702 E-mail: fddc@fddc.org Web Site: http://www.fddc.org Available from the website.

Keywords: Adolescent sexuality, Adolescents with developmental disabilities, Adolescents with special health care needs, Children with developmental disabilities, Children with special health care needs, Dating, Families, Parents, Physical abuse, Sexual abuse, Sexuality, Social skills, Spanish language materials

McManus P, Rogers K. 2011. Health care transition for youth with special health care needs: An analysis of national and state performance. Concord, NH: Got Transition National Health Care Transition Center; Washington, DC: National Alliance to Advance Adolescent Health, 8 pp.

Annotation: This report provides new national and state information about adolescents (ages 12-17) with special health care needs and their transition from pediatric to adult health care. The purpose of the report is to establish a transition baseline, examine state variation in transition performance, and explore possible reasons for this variation. The report analyzes the national transition outcome measures according to race/ethnicity, income, insurance, gender, and the presence of a medical home and responds to individual questions that make up the composite transition measure.

Contact: Got Transition™/Center for Health Care Transition Improvement, National Alliance to Advance Adolescent Health, 1615 M Street, N.W., Suite 290, Washington, DC 20036, Telephone: (202) 223-1500 Fax: (202) 429-3957 E-mail: info@GotTransition.org Web Site: http://gottransition.org Available from the website.

Keywords: Adolescents with special health care needs, Ethnic factors, Health care, Health insurance, Income factors, Measures, Medical home, Racial factors, Transition planning

Healthy and Ready to Work National Resource Center. 2010. Transition resources from state Title V programs. Augusta, ME: Healthy and Ready to Work National Resource Center, 2 pp.

Katzel A, LaVant A, Richards C. 2010. Blazing the trail: A new direction for youth development and leadership—Youth call to action. Washington, DC: National Collaborative on Workforce and Disability for Youth, 8 pp.

Annotation: This call-to-action outlines ten steps that young people can take to enhance their development and become leaders in their community and the nation. Included are guidelines to help youth learn about their rights and responsibilities, connect with the community, become self-advocates, learn about the disability movement, participate in the transition from youth to adulthood, research scholarships, obtain work experience, find or become a mentor, serve on decision-making boards, and help to train those who work with you. The recommended action steps are based on findings from the National Collaborative on Workforce and Disability for Youth (NCWD/Youth) Blazing the Trail summit held in August 2007, which brought together more than 200 youth and adults to discuss what action steps would help ensure that young people are prepared to move successfully from youth to adulthood.

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 from the website.

Keywords: Adolescents, Collaboration, Disability, Guidelines, Leadership, School to work transition, Service learning, Youth development

Association of Maternal and Child Health Programs. 2009. Models of care for children and youth with special health care needs: Promising models for transforming California's system of care. Washington, DC: Association of Maternal and Child Health Programs, 55 pp.

Annotation: This report provides a range of models of care for children and youth with special health care needs that the Lucille Packard Foundation for Children's Health can review and discuss as a starting point for mapping out a strategy to support a transformation of the system of care. The report discusses models of care, the importance of integrated services, the medical home, care coordination, cultural competence, family-centered care and family involvement, transition, palliative and respite care, financing of care, and health information technology.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: info@amchp.org Web Site: http://www.amchp.org Available from the website.

Keywords: Financing, Adolescents with special health care needs, Children with special health care needs, Cultural competence, Families, Health care systems, Medical home, Palliative treatment, Respite care, Service coordination, Service integration, Transition to independent living

Larson, M. 2009. Supporting transition to adulthood among youth with mental health needs: Action steps for policymakers. Washington, DC: National Collaborative on Workforce and Disability for Youth, 10 pp. (Policy brief; issue 2)

Annotation: This policy brief calls attention to the challenges that adolescents and young adults with mental health problems face during their transition to adulthood, and it provides policymakers at the state and local levels with information to help them develop and improve service-delivery systems for this population. Topics include (1) losing access to treatment because of different eligibility criteria in child vs. adult systems, (2) reports related to the needs of adolescents and young adults with mental health problems; (3) promising mental health recovery models, (4) competitive employment, (5) collaboration, and (6) state policies,

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 from the website.

Keywords: Access to health care, Adolescent mental health, Adolescents, Collaboration, Eligibility, Employment, Mental disorders, Mental health, Model programs, Public policy, School to work transition, Service delivery systems, State programs, Treatment, Young adults

National Collaborative on Workforce and Disability for Youth. 2009. Helping youth with mental health needs avoid transition cliffs: Lessons from pioneering transition programs. Washington, DC: National Collaborative on Workforce and Disability for Youth, 10 pp. (InfoBrief; issue 24)

Annotation: This brief discusses the challenges faced by youth and young adults with mental health needs during their transition to adulthood and describes strategies used by youth service professionals to avoid age-related transition barriers and to prevent service interruptions during this critical stage of development. Included are detailed guidelines to help professionals achieve success for youth with mental health needs in the following general areas of (1) school-based preparation; (2) career preparation and work-based learning experiences; (3) youth development and leadership; (4) connecting activities: (5) and family involvement and support. The brief is based on previous research about transition-age youth with mental health needs published in early reports, including two produced by the National Collaborative on Workforce & Disability for Youth (NCWD/Youth).

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 from the website.

Keywords: Adolescents with developmental disabilities, Guidelines, Mental health, Mental health programs, Resources for professionals, Young adults, Youth development, Youth in transition programs

McManus M, Fox H, O'Connor K, Chapman T, MacKinnon J. 2008. Pediatric perspectives and practices on transitioning adolescents with special needs to adult health care. Washington, DC: National Alliance to Advance Adolescent Health, 5 pp. (Fact sheet; no. 6)

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, 1615 M Street, N.W., Washington, DC 20036, Telephone: (202) 223-1500 Fax: (202) 429-3557 E-mail: info@thenationalalliance.org Web Site: http://www.thenationalalliance.org/ Available from the website.

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

National Institute for Health Care Management [Research and Educational] Foundation. 2006. Closing the gaps in health care for adolescents and young adults. Washington, DC: National Institute for Health Care Management [Research and Educational] Foundation,

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 Foundation, 1225 19th Street, N.W., Suite 710, Washington, DC 20036, Telephone: (202) 296-4426 Fax: (202) 296-4319 E-mail: http://www.nihcm.org/contact Web Site: http://www.nihcm.org Available from the website.

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

National Collaborative on Workforce and and Disability for Youth. 2005. The 411 on disability disclosure: A workbook for youth with disabilities. Washington, DC: Institute for Educational Leadership, 92 pp.

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 from the website.

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

Hauser-Cram P. 2003. Early Intervention Collaborative Study (EICS) Phase IV: Adolescence—Final report. Chestnut Hill, MA: Lynch School of Education, Boston College, 38 pp.

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, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

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

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.