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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 (199 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

Holt K, Barzel R, eds. 2020. Oral health services for children and adolescents with special health care needs: A resource guide (4th. ed.). Washington, DC: National Maternal and Child Oral Health Resource Center, 21 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, 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

Honsberger K, Tanga AM, Eichner H. 2020. Identification and screening of social determinants of health among children with special health care needs in Medicaid. Itasca, IL: National Resource Center for Patient/Family-Centered Medical Home, 7 pp.

Annotation: This fact sheet discusses the relationship between social determinants of health (SDOH) and children and youth with special health care needs (CYSHCN) and gives case studies from North Carolina, Kansas and Oregon to describe how these states have used screenings and administrative data to identify and assess SDOH in order to better support CYSHCN.

Contact: National Resource Center for Patient/Family-Centered Medical Home, American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: https://medicalhomeinfo.aap.org/Pages/default.aspx Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Kansas, Managed care, Medicare, North Carolina, Oregon, Social factors, State initiatives

Surdu S, Langelier M, Fosse C, Li Q. 2020. Contributions of general and specialty dentists to provision of oral health services for people with special needs. Rensselaer, NY: Oral Health Workforce Research Center, 50 pp.

Annotation: This report describes a study conducted to assess the contributions of general and specialty dentists to caring for people with special health care needs (SHCN). It also describes sources of training for dentists that are relevant to treating people with SHCN. The report provides background and methodology and discusses findings from the literature review and results from the study. Statistical information is presented in tables and figures.

Contact: Oral Health Workforce Research Center, New York Center for Health Workforce Studies, University of Albany, SUNY, School of Public Health, 1 University Place, Suite 220, Rensselaer, NY 12144-3445, Telephone: (518) 402-0250 Fax: (518) 402-0252 Web Site: http://www.oralhealthworkforce.org Available from the website.

Keywords: Adolescents with special heath care needs, Adults with special health care needs, Children with special health care needs, Dentists, Oral health, Statistical data, Studies, Training

National Academy for State Health Policy. 2020. National standards for CYSHCN one-pagers showcase most utilized domains. Portland, ME: National Academy for State Health Policy, 1 web resource.

Annotation: The National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN) define the core components of a comprehensive, coordinated, and family-centered system of care for CYSHCN. These one-pagers highlight the five most utilized National Standards domains, including identification and assessment, access to care, transition to adult care, medical homes, and community-based services and supports. The downloadable one-pagers include standards language, relevant quality measures, and examples of state implementation.

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

U.S. Maternal and Child Health Bureau. 2020. Request for Information: A Blueprint for Change: Guiding Principles for Advancing the System of Services for Children and Youth with Special Health Care Needs (CYSHCN) and Families . Rockville, MD: U.S. Maternal and Child Health Bureau, 8 pp.

Annotation: This document requests input on a blueprint designed to inform programs and policy at the community, state, and federal levels on how systems of care for children and youth with special health care needs (CYSHCN) can be operationalized in the key areas of health equity, access to services and supports, family/child well-being and quality of life, and financing of services. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-2170 Web Site: https://mchb.hrsa.gov Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Health care systems, Public health services, Service delivery systems

U.S. Maternal and Child Health Bureau. 2020. Children with special health care needs. Rockville, MD: U.S. Maternal and Child Health Bureau, 3 pp. (NSCH data brief)

Annotation: This brief provides a 2017-2018 data snapshot of children and youth with special health care needs (CHSYCN) from the National Survey of Children's Health (NSCH). It covers types of special health care needs in this population, frequency/degree of activity limitations, prevalence of certain health conditions, key indicators and effective systems. It also describes the NCSH data collection.

Contact: U.S. Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-2170 Web Site: https://mchb.hrsa.gov Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Statistics

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

Wong A, Sands W. 2018. Quality resource guide: Introduction to patients with special healthcare needs. New York, NY: Metropolitan Life Insurance Company, 8 pp.

Annotation: This document for oral health professionals provides information about dental treatment and prevention of oral disease for people with special health care needs (SHCN). Topics include oral health needs among those with SHCN, delivery of care and principles to guide it, developing the oral health care team, scheduling, desensitizing, decreasing acids, additional assistance, special concerns, fluoride and tooth remineralization, and caries arrest with silver diamine fluoride.

Contact: Metropolitan Life Insurance Company, 200 Park Avenue, New York, NY 10166, Web Site: http://www.metlife.com Available from the website.

Keywords: Adolescents with special health care needs, Adults with special health care needs, Children with special health care needs, Dental caries, Infants with special health care needs, Oral health, Prevention, Treatment

Hergenroeder AC, Wiemann CM, eds. 2018. Health care transition: Building a program for adolescents and young adults with chronic illness and disability. New York, NY: Springer, 394 pp.

Annotation: This book addresses aspects of transitioning from pediatric to adult health care for adolescents and young adults with chronic illness or disability. It includes a framework, tools, and case-based examples to inform developing and evaluating a health-care-transition (HCT)-planning program that can be implemented regardless of an individual’s disease or disability. Selected topics include defining successful transition, financing transition, special issues in transition, and models of HCT programs. One chapter provides an overview of the Dental Education in the Care of Persons with Disabilities Program at the University of Washington School of Dentistry

Contact: Springer, 233 Spring Street, New York, NY 10013, Telephone: (212) 460-1572 Fax: (212) 620-8442 E-mail: victoria.enever@springer.com Web Site: http://www.springer.com Available in libraries.

Keywords: Access to health care, Adolescent health, Adolescents with special health care needs, Oral health, Transition planning, Transitions

Shattuck PT, Rask JE, Roux AM, Anderson KA, Benefides T, Garfield T,McGhee Hassrick E, Kuo A. 2018. National autism indicators report: High school students on the autism spectrum. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 59 pp.

Annotation: This report focuses on teens and young adults with autism who are about to finish high school and highlights challenges facing minority youth and those from low-income households. It identifies risk and protective factors that can influence how lives turn out. It describes what is known about this population, including individual and household demographics and disability characteristics and adaptive behaviors. It also looks and special education services during secondary school and health, mental health, and health care. Recommendations are included. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Available from the website.

Keywords: Adolescents with special health care needs, Autism, Transition to independent living

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

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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.