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Strengthen 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 (48 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

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

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 evaluate the attitudes and willingness of general and specialty dentists to treat people with special health care needs and to identify barriers that dentists face in caring for them. The report presents findings from a literature review and results and conclusions from the study.

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

Barbara Aved Associates. 2020. Painful realities: General anesthesia access in Sacramento GMC dental managed care. Sacramento, CA: Sacramento County Department of Health Services, Public Health Division, Oral Health Program, 71 pp.

Annotation: This report describes a study conducted to determine the availability of general anesthesia (GA) for oral health care in Sacramento County, CA, particularly for individuals with special health care needs (SHCN). The report discusses the importance of GA for those with SHCN who may be unable to tolerate oral health care without it. Topics include process and data sources, background, findings, and recommendations.

Contact: Sacramento County Department of Health Services, Public Health Division, 7001-A East Parkway, Suite 600, Sacramento, CA 95823, Telephone: (916) 875-6259 Web Site: http://www.scph.com Available from the website.

Keywords: California, Children with special health care needs, Adults with special health care needs, Access to health care, Oral health, State programs

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

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

National Council on Disability. 2017. Neglected for too long: Dental care for people with intellectual and developmental disabilities. Washington, DC: National Council on Disbility, 10 pp. (Issue brief)

Annotation: The brief provides information on inadequate access to oral health care for people with intellectual and developmental disabilities (IDD). The brief introduces the issue and discusses ethics and professional conduct, training, dental school curricula requirements, and Medicaid coverage for this population. A list of programs that train dental students in providing care for people with IDD is included, along with recommendations on how to address the problem of lack of access to care and highlights from the brief.

Contact: National Council on Disability, 1331 F Street, N.W., Suite 850, Washington, DC 20004-1107, Telephone: (202) 272-2004 Secondary Telephone: (202) 272-2074 Fax: (202) 272-2022 E-mail: ncd@ncd.gov Web Site: http://www.ncd.gov/ Available from the website.

Keywords: Access to health care, Adults with special health care needs: Medicaid, Children with special health care needs, Oral health

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 cards provides oral health messages for health professionals 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 in 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

Association of Maternal and Child Health Programs and Family Voices. 2016. Stories of the newly enrolled: How new ACA coverage options are impacting women and families raising children with special health care needs. Washington, DC: Association of Maternal and Child Health Programs, 7 pp.

Annotation: This brief presents five case studies of women, young adults, and families, including those raising children and youth with special health care needs (CYSCHN), about enrolling in and receiving care through the Affordable Care Act (ACA) health insurance coverage. The contents illustrate some of the benefits of the ACA's new coverage options for women and families with CYSCHN and challenges that remain in closing gaps in care and ensuring appropriate coverage for vulnerable populations. Topics include ACA provider networks, autism treatment coverage; and coverage for Native Americans; immigrant and refugee women, and young adult women. [Funded by the Maternal and Child Health Bureau]

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: Access to health care, American Indians, Case studies, Children with special health care needs, Family centered care, Financing, Health care reform, Health insurance, Immigrants, Patient Protection and Affordable Care Act, Program improvement, Refugees, Women, Young adults

Antosh AA, Blair M, Edwards K, Goode T, Hewitt A, Izzo M, Johnson DR, Raynor O, Riddle I, Shanley JL, Walker R, Wehmeyer M. 2014. A comprehensive approach to transition. Silver Spring, MD: Association of University Centers on Disabilities, 21 pp.

National Association of County and City Health Officials . 2014. Capacity of local health departments to track, administer, and promote seasonal influenza vaccination for pregnant women, children with special health care needs, and adults with disabilities. Washington, DC: National Association of County and City Health Officials , 8 pp.

Annotation: This research brief highlights the extent to which local health departments (LHDs) provide and have the capacity to track, administer, and promote influenza (flu) vaccination for pregnant women, children with special health care needs, and adults with disabilities. Contents include data on the percentage of LHDs providing adult and child immunizations for the period 2005-2013 and findings from key informant interviews on seasonal flu vaccination rates, administering and promoting vaccinations, and partnerships. Reimbursement issues; the emergence of retail pharmacies in the immunization market; strategies used to promote flu vaccination; and opportunities, challenges, and recommendations are also discussed.

Contact: National Association of County and City Health Officials, 1100 17th Street, N.W., Seventh Floor, Washington, DC 20036, Telephone: (202) 783-5550 Fax: (202) 783-1583 E-mail: info@naccho.org Web Site: http://www.naccho.org Available from the website.

Keywords: Adolescents with special health care needs, Adults, Children with special health care needs, Disabilities, Health agencies, Influenza, Local government, Pregnant women, Prevention services, Public health infrastructure, Vaccines

Association of Maternal & Child Health Programs and the National Academy for State Health Policy. 2014. National standards systems of care for children and youth with special health care needs (version 2.0). Washington, DC: Association of Maternal and Child Health Programs; Portland, ME: National Academy for State Health Policy,

Annotation: This resource provides a comprehensive set of system standards that can be used or adapted for use by various systems and organizations that serve CYSHCN. This includes state Title V programs, state Medicaid and CHIP programs, private and public health plans, pediatricians and other health care providers, family/consumer groups, as well as families themselves. Topics include (1) identification, screening, assessment, and referral; (2) eligibility and enrollment in health coverage; (3) access to care; (4) medical home; (5) community-based services and supports; (6) transition to adulthood; (7) health information technology; and (8) quality assurance and improvement. Tip sheets on how the National Standards can be used by: Title V Programs, Medicaid Programs, Health Care Providers, Health Plans, and Families and Family Organizations and an online toolkit that includes assessment tools, case studies, e-learning modules, quality measurement resources, state examples, and other publications are also available.

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

Genetic Alliance, Family Voices. 2013. Children and youth with special healthcare needs in Healthy People 2020: A consumer perspective. Washington, DC: Genetic Alliance; Albuquerque, NM: Family Voices, 44 pp.

Annotation: This document examines Healthy People 2020 objectives and serves as a companion to Envision 2020, the 10-year strategic plan for the Division of Services for Children with Special Heath Needs in the Health Resources and Services Administration's Maternal and Child Health Bureau. The document provides background; discusses trends in programs, legislation, and care for children and youth with special health care needs (CYSCN); provides core performance measures for CYSCN; discusses who is at risk for chronic illnesses and disabilities; and offers information about preparing children and families for the future. Stories about individual children and families are included.

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Adolescents with special heath care needs, Chronic illnesses and disabilities, Environmental influences, Families, Health services, Healthy People 2020: Children with special health care needs, High risk children, High risk infants, Infants with special health care needs, Legislation, Programs, Transition planning, Young adults

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

Maine Department of Health and Human Services, Center for Disease Control and Prevention. 2013. Oral health in Maine. Augusta, ME: Maine Department of Health and Human Services, Center for Disease Control and Prevention, 63 pp.

Annotation: This report provides information on the burden of oral diseases in children and adults in Maine, including data on access to care, prevalence of oral diseases and oral-health-related risk behaviors, and the oral health work force in the state. The report also addresses the oral disease burden in specific population groups, such as children with special health care needs, children enrolled in MaineCare (Maine’s Medicaid program), pregnant women, and adults ages 65 and older. Comparisons are made to national data when possible and to Healthy People 2010 objectives.

Contact: Maine Department of Health and Human Services, Oral Health Program, 11 State House Station, Key Plaza, Fifth Floor, Augusta, ME 04333, Web Site: http://www.maine.gov/dhhs/mecdc/population-health/odh Available from the website.

Keywords: Access to health care, Children with special health care needs, Data, Healthy People 2010, Low income groups, Maine, Medicaid, Older adults, Oral health, Pregnant women, Risk factors, State programs

National Institute of Dental and Craniofacial Research. 2012–. Practical oral care for people with developmental disabilities. Bethesda, MD: National Institute of Dental and Craniofacial Research, multiple items.

Annotation: This series of booklets is designed to provide oral health professionals with information about oral health care for people with special health care needs (SHCN). Strategies for care, covering topics such as mobility, neuromuscular problems, behavior problems, and sensory impairment, are discussed in the context of the dental office. Individual booklets on oral health and autism, cerebral palsy, Down syndrome, and intellectual disability offer practical guidance on adapting standard practice to accommodate those with SHCN. A guide for caregivers and one on safe wheelchair transfer are included.

Contact: National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, MD 20892, Telephone: (866) 232-4528 E-mail: nidcrinfo@mail.nih.gov Web Site: https://www.nidcr.nih.gov Available from the website.

Keywords: Adolescents with special health care needs, Adults, Autism, Children with special health care needs, Continuing education, Dental care, Developmental disabilities, Health care delivery, 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.