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Strengthening the evidence for maternal and child health programs

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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 20 (194 total).

Bronheim S, Fiel S, Schidlow D, MagrabP, Boczar K, Dillon C. n.d.. Crossings: A manual for transition of chronically ill youth to adult health care. Harrisburg, PA: Pennsylvania Department of Health, 52 pp.

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, Box 571485, Washington, DC 20057-1485, Telephone: (202) 687-5503 Secondary Telephone: (202) 687-5000 Fax: (202) 687-8899 E-mail: gucdc@georgetown.edu Web Site: http://gucchd.georgetown.edu 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

Simmons E. n.d.. Youth in Transition—The Alabama Experience: [Final report]. Montgomery, AL: Alabama Department of Education, 32 pp.

Annotation: This project focused on developing a systematic approach to integrate medical, vocational, educational, psychosocial, and developmental services for adolescents with physical disabilities and/or chronic illness who are at risk in their transition to maturity. Project objectives were to (1) create an administrative structure at the State level and in two pilot sites for provision of an integrated continuum of health and education services; (2) enable service providers, through training and collaboration, to coordinate service planning for the target population; (3) enable the adolescent and family, through counseling and training, to function as their own "case manager"; and (4) monitor and evaluate the model to determine the feasibility for replication in Alabama and/or other states. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB93-147031.

Keywords: Adolescents with special health care needs, Advocacy, Chronic illnesses and disabilities, Community-Based Health Care, Coordination of Health Care, Data Bases, Interdisciplinary Teams, Rural Population, Urban Population

Hostler S. n.d.. Family Autonomy Project [Final report]. Charlottesville, VA: University of Virginia, 50 pp.

Annotation: The goal of this project was to ensure the successful transition to adulthood of adolescents with physical disabilities or chronic illnesses by means of interventions with families, the health care team, and the adolescents themselves. The project sought to encourage the involvement of families in planning for the health care of their children, to modify staff behaviors and institutional practices to promote family autonomy, and to broaden treatment goals so that they included health maintenance and future planning for adolescents with special needs. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB93-196962.

Keywords: ., Adolescents with special health care needs, Advocacy, Chronic illnesses and disabilities, Families, Family-Centered Health Care Transition, Support Groups

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)

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

Family Voices; IMPACT. n.d.. Transitions--Growing up and away. Albuquerque, NM: Family Voices, IMPACT, 3 pp.

Annotation: This fact sheet provides tips to help parents of adolescents with special health care needs support their sons' and daughters' transition into adulthood.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Adolescent development, Adolescents with special health care needs, Parenting, Transition planning, Transitions, Young adults

University of Kentucky Human Development Institute. 2018. Glossary of disability terms and acronyms. [Lexington, KY?]: University of Kentucky Human Development Institute, 10 pp.

Harper K; Ne'eman A. 2018. A state multi-sector framework for supporting children and youth with special health care needs. Bethesda, MD: Child Trends, 24 pp.

Annotation: This framework describes desired systems performance outcomes for children and youth with special health care needs (CYSHCN) in the domains of health services; family support and social services; education and employment services; and law enforcement and juvenile justice contact. The document provides a table listing services used by CYSHCN and their families by domain; a description of how the literature was reviewed; a list of statutes, policies and existing documents relating to the outcomes; a list of state, federal and other actors who support CYSHCN and their families; and available datasets and state policy compendia. The audience for the framework is parents, state lawmakers, and other stakeholders.

Contact: Child Trends, 7315 Wisconsin Avenue, Suite 1200 W, Bethesda, MD 20814, Telephone: (240) 223-9200 E-mail: Web Site: http://www.childtrends.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Families, Health care systems, Policies, Service delivery systems, State programs, Youth with special health care needs

Honsberger K, Eichner H. 2018. How states use the national standards for CYSHCN to strengthen Medicaid managed care for children with special health care needs. Portland, ME: National Academy for State Health Policy,

Annotation: This fact sheet provides examples of state actions to use the National Standards for Children and Youth with Special Health Care Needs (CYSHCN) to strengthen their managed care systems for CYSHCN. Topics include analyzing and enhancing specialized managed care plans, providing a framework to design and strengthen care delivery systems, strengthening contract language to address the needs of CYSHCN, and improving care coordination and transition to adult care. The various state examples outlined here resulted from a 12-month learning collaborative facilitated by NASHP, in partnership with the Association of Maternal & Child Health Programs (AMCHP), with support from the Lucile Packard Foundation for Children’s Health (LPFCH).

Contact: National Academy for State Health Policy, 10 Free Street, Second Floor, Portland, ME 04101, Telephone: (207) 874-6524 Secondary Telephone: (202) 903-0101 Fax: (207) 874-6527 E-mail: info@nashp.org Web Site: http://www.nashp.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Managed care, Medicaid, Standards, State programs, Title V programs, Young adults

Eichner H, Handler M, Honsberger K, Normile B, Bussanich P. 2018. The national standards for children and youth with special health care needs: A compendium of national data and quality measure sets. Portland, ME: National Academy for State Health Policy, 12 pp.

Annotation: This measures compendium provides states and other key stakeholders with a reference tool that highlights relevant quality measures aligned with key domains of the National Standards for Children and Youth with Special Health Care Needs (CYSHCN). Topics include family-professional partnerships, cultural competence, indentification, screening, assessment, referral, insurance coverage, access to care, medical home, community-based services and supports, transition to adulthood, and health information technology.

Contact: National Academy for State Health Policy, 10 Free Street, Second Floor, Portland, ME 04101, Telephone: (207) 874-6524 Secondary Telephone: (202) 903-0101 Fax: (207) 874-6527 E-mail: info@nashp.org Web Site: http://www.nashp.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Data sources, Standards, Young adults

National Academy for State Health Policy. 2017 ca.. Toolkit: National standards for children and youth with special health care needs. Portland, ME: National Academy for State Health Policy,

Annotation: This toolkit provides a portal to critical tools, fact sheets, and other resources that states can use to design, strengthen, and improve health care systems serving children and youth with special health care needs and their families. Materials include publications, managed care, tools and tips, webinars, and quality measurement.

Contact: National Academy for State Health Policy, 10 Free Street, Second Floor, Portland, ME 04101, Telephone: (207) 874-6524 Secondary Telephone: (202) 903-0101 Fax: (207) 874-6527 E-mail: info@nashp.org Web Site: http://www.nashp.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Standards, Young adults

Holt K, Barzel R, eds. 2017. Oral health services for children and adolescents with special health care needs: A resource guide (3rd. ed.). Washington, DC: National Maternal and Child Oral Health Resource Center, 17 pp.

Annotation: This resource guide provides information for health professionals to assist them in planning, developing, and implementing efforts to ensure that children and adolescents with special health care needs receive optimal oral health care. The guide describes materials, including brochures, fact sheets, guides, manuals, and reports. It also lists federal agencies, resource centers, and national professional associations that may serve as resources. [Funded by the Maternal and Child Health Bureau]

Contact: National Maternal and Child Oral Health Resource Center, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9771 E-mail: OHRCinfo@georgetown.edu Web Site: https://www.mchoralhealth.org Available from the website.

Keywords: Adolescents with special health care needs, Resource materials, Oral health, Children with special health care needs

Wisconsin Children and Youth with Special Health Care Needs Medical Home Systems Integration Project. 2017. Wisconsin care coordination for children and youth mapping project. Madison, WY: Wisconsin Children and Youth with Special Health Care Needs Program, 33 pp. (exec. summ. 1 p.).

Annotation: This report describes a project that aimed to increase the number of children and youth with special health care needs (CYSHN) served within a medical home by 20% and specifically a mapping project that examined how care coordination is being implemented for CYSHN currently in Wisconsin, what gaps exist, and what assets can be built upon and shared. It describes findings of interviews conducted with a diverse group of systems, providers, and family representatives between October 2015 and December 2016. [Funded by the Maternal and Child Health Bureau]

Contact: Wisconsin Department of Health Services, One West Wilson Street, Madison, WI 53703, Telephone: (608) 266-1865 Secondary Telephone: (888) 701-1251 Web Site: https://www.dhs.wisconsin.gov

Keywords: Adolescents with special health care needs, Children with special health care needs, Medical home, Program coordination, State programs, Title V programs, Wisconsin

Catalyst Center. 2017. Leveraging Title V partnerships to advance National Performance Measure #15: Adequate health insurance. Boston, MA: Catalyst Center, 10 pp.

Annotation: This brief highlights collaborative Title V partnerships that hold promise for advancing the Title V National Performance Measure #15, adequate health insurance, focusing on ways Title V/Children and Youth with Special Health Care Needs (CYSHCN) programs can leverage their ability to partner with families, in particular with their state Family to Family program, to improve their capacity to contribute meaningfully to the challenges of financing and overseeing the quality of care for CYSHCN.

Contact: Catalyst Center, the National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs, Boston University School of Public Health, Center for Advancing Health Policy and Practice, 801 Massachusetts Avenue, Boston, MA 02218-2526, Telephone: (617) 638-1930 E-mail: mcomeau@bu.edu Web Site: http://cahpp.org/project/the-catalyst-center Available from the website.

Keywords: Access to care, Adolescents with special health care needs, Children with special health care needs, Health insurance, State programs, Title V programs, Youth with special health care needs

Massachusetts Department of Public Health, Office of Oral Health. [2016]. Toothbrush adaptations. Boston, MA: Massachusetts Department of Public Health, Office of Oral Health, 1 p. (Oral health in Massachusetts; A fact sheet)

Annotation: This fact sheet provides information about how toothbrushes can be adapted to make brushing easier. It presents background information about why oral health is important and provides ideas for adapting toothbrushes for anyone who has difficulty brushing their teeth. Illustrations showing the adaptations are included.

Contact: Massachusetts Department of Public Health, Office of Oral Health, 250 Washington Street, 5th Floor, Boston, MA 02108, Telephone: (617) 624-6060 Secondary Telephone: (617) 624-5992 Fax: (617) 624-6062 Web Site: http://www.mass.gov/dph/oralhealth Available from the website.

Keywords: Children with special health care needs, Adolescents with special health care needs, Consumer education materials, Oral health, Oral hygiene, Assistive devices

American Academy of Pediatric Dentistry. 2016. Definitions, oral health policies, and clinical guidelines. Chicago, IL: American Academy of Pediatric Dentistry, multiple items.

Annotation: This resource comprises definitions, policies, and clinical guidelines of the American Academy of Pediatric Dentistry. New, revised, and reaffirmed policies and guidelines address topics such as medically necessary care, work force issues and delivery of oral health services in a dental home, use of fluoride, use of dental bleaching, infection control, caries-risk assessment and management, restorative dentistry, oral surgery, and informed consent.

Contact: American Academy of Pediatric Dentistry, 211 East Chicago Avenue, Suite 1600, Chicago, IL 60611-2637, Telephone: (312) 337-2169 Fax: (312) 337-6329 Web Site: http://www.aapd.org Available from the website.

Keywords: Adolescents, Children, Children with special health care needs, Dental care, Guidelines, Health policy, Infants, Oral health, Pediatric dentistry, Perinatal health, Professional societies

Washington State Department of Health, Oral Health Program. 2016. Oral health promotion cards. Olympia, WA: Washington State Department of Health, Oral Health Program, 26 items.

Annotation: This series of 13 cards provides oral health messages for health professionals and community programs to share with clients and their families. Each card addresses a specific population (pregnant women, infants, children, adolescents, children with special health care needs, adults, and older adults) and is accompanied by a brochure listing messages and resources. The cards and brochures are available in English and Spanish.

Contact: Washington State Department of Health, P.O. Box 47890, Olympia, WA 98504-7890, Telephone: (800) 525-0127 Secondary Telephone: (360) 236-4030 Web Site: http://www.doh.wa.gov Available from the website.

Keywords: Adolescents, Adults, Children with special health care needs, Educational materials, Health promotion, Infants, Life course, Oral health, Pregnant women, Resources for professionals, Spanish language materials, Young children

Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health and Autism Speaks. 2016. Experience matters: A view into the health and wellbeing of US children and families with autism spectrum disorder. Baltimore, MD: Data Resource Center for Child and Adolescent Health, 117 pp.

Annotation: This chartbook for families, advocates, policymakers, and researchers provides a national portrait of how children in the United States receive their diagnosis of autism spectrum disorder (ASD), how their daily lives are impacted, and how their families are doing. Topics include the prevalence of ASD, diagnosing ASD, the child's health, health care and related services, school and social wellbeing, and coping with ASD. The appendices contain information on the ASD data presented in the chartbook including a glossary, a crosswalk of the data sources, methodological information, and guidance for accessing the data. [Funded by the Maternal and Child Health Bureau]

Contact: Data Resource Center for Child and Adolescent Health, Child and Adolescent Health Measurement Initiative, The Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD 21205, E-mail: info@cahmi.org Web Site: https://childhealthdata.org Available from the website.

Keywords: Adolescent health, Adolescents with special health care needs, Autism, Child health, Child with special health care needs, Coping, Data sources, Diagnosis, Early intervention services, Family health, Prevalence, Relationships, Special health care services, Statistical data

Wisconsin Children and Youth with Special Health Care Needs Medical Home Systems Integration Project. 2015. Wisconsin state plan to serve more children and youth within medical homes, including those with special health care needs. Madison, WY: Wisconsin Children and Youth with Special Health Care Needs Program, 61 pp.

Annotation: This document outlines a Wisconsin state plan developed to increase the number of children served within a medical home. It identifies strategies and actions steps for families, clinicians, and systems of care, with objectives, timelines, and measures. [Funded by the Maternal and Child Health Bureau]

Contact: Wisconsin Department of Health Services, One West Wilson Street, Madison, WI 53703, Telephone: (608) 266-1865 Secondary Telephone: (888) 701-1251 Web Site: https://www.dhs.wisconsin.gov

Keywords: Adolescents with special health care needs, Children with special health care needs, Medical home, Statewide planning, Wisconsin

Holt K, Barzel R, Bertness J. 2014. Oral health for children and adolescents with special health care needs: Challenges and opportunities (2nd ed.). Washington, DC: National Maternal and Child Oral Health Resource Center, 6 pp.

Annotation: This fact sheet focuses on challenges to and opportunities for providing oral health care to children with special health care needs. Topics include factors that contribute to oral health problems in this population, unmet oral health care needs, barriers to oral health care, care coordination, work force development, and federal and national programs. [Funded by the Maternal and Child Health Bureau]

Contact: National Maternal and Child Oral Health Resource Center, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9771 E-mail: OHRCinfo@georgetown.edu Web Site: https://www.mchoralhealth.org Available from the website.

Keywords: Access to health care, Adolescents with special health care needs, Barriers, Children with special health care needs, Dental care, Health care financing, Oral health

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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.