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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 (24 total).

Catalyst Center. 2023. Leverage opportunities + speak the Medicaid language: A workbook for Title V. Boston, MA: Catalyst Center,

Annotation: This workbook for Title V program staff focuses on the importance of Medicaid in the system of services for children and youth with special health care needs (CYSHCN). It provides an overview of the Medicaid program, including chapters on Medicaid managed care; the Early and Periodic Screening Diagnostic and Treatment (EPSDT) benefit; and pathways to Medicaid coverage for children who require an institutional level of care. The purpose of the resource is to increase Title V program staff identification and knowledge of finance-related services for CYSHCN, particularly Medicaid. It includes questions to guide users through the process of mapping a Medicaid system and building a strategy for their own state.

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: [email protected] Web Site: https://ciswh.org/project/the-catalyst-center/

Keywords: Adolescents with special health care needs, Children with special health care needs, Children', Medicaid, Medicaid managed care, Title V, Youth, s Health Insurance Program

Schiff J, Manning L, VanLandeghem K, Langer CS, Schutze M, Comeau M. 2022. Financing care for CYSHCN in the next decade: Reducing burden, advancing equity, and transforming systems . Pediatrics. 2022 Jun 1;149(Suppl 7), 9 pp.

Girmash E, Creveling E. 2021. Strengthening Title V - Medicaid managed care collaborations to improve care for CYSHCN. Boston, MA: Catalyst Center, 8 pp.

Annotation: This issue brief discusses how state Title V programs, Medicaid agencies, and Medicaid managed care organizations can work collaboratively to strengthen supports for children and youth with special health care needs. The brief enumerates the essential steps in the Medicaid managed care procurement process and provides strategies and considerations for collaboration between Title V and managed care programs.

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: [email protected] Web Site: https://ciswh.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, Medicaid, State programs, Title V programs, Youth with special health care needs

Association of Maternal and Child Health Programs; Georgia Health Policy Center. 2021. Medicaid options for states during COVID-19: Considerations for children and youth with special health care needs. Washington, DC: Association of Maternal and Child Health Programs,

Annotation: This fact sheet explores Medicaid policy options for states to meet the needs of children and youth with special health care eneds (CYSHCN) during the COVID-19 public health emergency (PHE) and discusses how future rollbacks of PHE modifications may affect CYSHCN populations.

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: [email protected] Web Site: http://www.amchp.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Children', Communicable diseases, Emergencies, Medicaid, Policy development, State health insurance programs, Virus diseases, Youth, s health insurance program

Association of Maternal and Child Health Programs . 2020. Telehealth capacity of maternal & child health public health systems in response to the COVID-19 pandemic: environmental scan . Washington, DC: Association of Maternal and Child Health Programs , 15 pp.

Annotation: This environmental scan summarizes themes that emerged during interviews with key informants on the implementation of telehealth solutions during the COVID-19 pandemic. The brief describes several themes that emerged across multiple programs: (1) There is significant variance in the level of telehealth implementation occurring across jurisdictions; (2) Systemic and widespread connectivity issues exist for families and some programs; (3) There is a lack of evidence by which to make decisions about if and how to continue or expand telehealth to best meet families’ needs; and (4) Improved mechanisms are needed to connect available educational and training resources with the providers and staff who need them, when they need them. Contributors include representatives from Title V and children and youth with special health care needs (CYSHCN) programs, newborn screening functions, and maternal, infant, and early childhood home visiting (MIECHV) services.

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: [email protected] Web Site: http://www.amchp.org

Keywords: Barriers, Child health, Children with special health needs, Health care delivery, Interviews, Maternal health, Telecommunications, Telemedicine, Youth

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

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 national performance measure focusing on adequate health insurance. The brief focuses 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 ensuring the availability of quality 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: [email protected] Web Site: https://ciswh.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

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.

Boyd LW. 2013. Theraeputic foster care: Exceptional care for complex, trauma-impacted youth in foster care. Washington, DC: First Focus, State Policy and Advocacy Reform Center, 13 pp.

Annotation: This report provides information about best practices in therapeutic or treatment foster care (TFC), a clinical intervention for youth from birth to age 18 who have severe mental, emotional, or behavioral health needs. Topics include essential partners; building relationships among provider agencies and child advocates; example practices in Connecticut, Illinois, Michigan, Oklahoma, Nebraska; efforts to expand the focus beyond safety and permanency to well-being for youth in therapeutic foster care; and public policy challenges.

Contact: First Focus, 1400 Eye Street, N.W., Suite 650, Washington, DC 20005, Telephone: (202) 657-0670 Fax: (202) 657-0671 Web Site: http://www.firstfocus.net Available from the website.

Keywords: Access to health care, Adolescents with special health care needs, Advocacy, Behavioral medicine, Children with special health care needs, Foster care, Foster parents, Health services delivery, Intervention, Medically fragile children, Mental health, Policy development, Psychological needs, Reimbursement, Relationships, Therapeutics, Training, Trauma care, Youth

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 McCourt School of Public Policy , Center for Children and Families, 600 New Jersey Avenue , Washington, DC 20001, Telephone: (202) 687-0880 Fax: (202) 687-3110 E-mail: [email protected] 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

Minnesota Children and Youth with Special Health Care Needs. 2010. Who pays: Taking the MAZE out of funding. St. Paul, MN: Minnesota Department of Health, 240 pp.

Annotation: This training manual is designed to inform both families and professionals about a wide range of potential funding sources to improve access to care and access to other resources for children, youth, young adults, and families in the state of Minnesota. It describes major funding programs, other possible funding options, and tools to help identify funding resources. Included are lists of programs and services for children with special health care needs; general brochures about programs offered by Minnesota's Department of Human Services; information on multicultural resources (including public benefits for non-citizens; information on mental health programs and school services); and tools for use in finding resources for families including how to apply, income and asset guidelines; and covered services.

Contact: Minnesota Department of Health, P.O. Box 64975, St. Paul, MN 55164-0975, Telephone: (651) 201-5000 Secondary Telephone: (888) 345-0823 Web Site: http://www.health.state.mn.us Available from the website.

Keywords: Adolescent health, Child health, Children with special health care needs, Financing, Health care financing, Minnesota, State programs, Training materials, Youth

Iowa Department of Public Health, Bureau of Family Health, Child Health Specialty Clnics. 2010. Iowa MCH2015: Iowa maternal and child health comprehensive Title V assets and needs assessment. Des Moines, IA: Iowa Department of Public Health, Bureau of Family Health, 173 pp.

Annotation: This report describes a Title V five-year needs assessment (2008-2012) and strategic plan for a comprehensive assessment to identify the need in Iowa for: preventive and primary care services for pregnant women, mothers, and infants; preventive and primary care services for children; and services for children and youth with special health care needs. Contents include summaries of goals and vision; leadership; methodology; methods for assessing the MCH populations and state capacity; data sources; linkages between assessment, capacity, and priorities; dissemination; and strengths and weaknesses of process. [Funded by the Maternal and Child Health Bureau]

Contact: Iowa Department of Public Health, Bureau of Family Health, Lucas State Office Building, 321 East 12th Street, Des Moines, IA 50319, Telephone: (800) 383-3826 Secondary Telephone: (800) 443-8336 Fax: (515) 725-1760 Web Site: http://www.idph.iowa.gov/family-health Available from the website.

Keywords: Adolescents, Children, Children with special health care needs, Final reports, Health services delivery, Iowa, Needs assessment, Pregnant women, State surveys, Strategic plans, Title V programs, Youth

Fleischfresser S. 2009. State implementation grants for integrated community systems for children with special health care needs [Wisconsin]: [Final report]. Madison, WI: Wisconsin Department of Health Services, 29 pp., plus appendices.

Annotation: This final report for the Wisconsin Integrated Services for Children with Special Health Care Needs program discusses the project purpose; goals and objectives; methodology; evaluation; results, outcomes, and lessons learned; publications and products; dissemination and utilization of results; and sustainability. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org

Keywords: Adolescents with special health care needs, Children with special health care needs, Community health services, Families, Final reports, Health care systems, Leadership, Medical home, Parents, Service integration, Wisconsin, Youth in transition programs

Wolraich M. 2009. Sooner SUCCESS: State implementation grants for integrated community systems for CSHCN. [Final report]. Oklahoma City, OK: Board of Regents University of Oklahoma, 185 pp.

Annotation: This final report for the Sooner SUCCESS (State Unified Children's Comprehensive Exemplary Service for Special Needs) program discusses the project purpose; goals and objectives; methodogy; evaluation; results, outcomes, and lessons learned; publications and products; dissemination and utilization of results; and sustainability. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org

Keywords: Final reports, Adolescents with special health care needs, Children with special health care needs, Communities, Community health services, Families, Family support services, Health care systems, Medical home, Oklahoma, Parents, School to work transition, Service coordination, Service integration, Transition to independent living, Youth in transition programs

Fluet C, Freeman L, Porter S. 2008. Transition planning curriculum. Boston, MA: Massachusetts Consortium for Children with Special Health Care Needs, 51 pp.

Annotation: This guide presents a training curriculum developed through needs assessment, pilot testing, and post implementation evaluation to raise expectations about what youth with special health care needs can achieve, build specific transition-to-adulthood related resources among participants, increase participants' knowledge about transition related resources, and promote a collaborative approach among community service providers who work with youth and families during transition. [Funded by the Maternal and Child Health Bureau]

Contact: New England SERVE, 101 Tremont Street, Suite 812, Boston, MA 02108, Telephone: (617) 574-9493 Fax: (617) 574-9608 Available from the website.

Keywords: Adolescents, Children with special health care needs, Curricula, Professional training, Transition planning, Youth, Youth in transition programs

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

ASD Expert Working Group. 2005. Autism spectrum disorders (ASD) roadmap. Silver Spring, MD: Social and Scientific Systems, 17 pp.

Annotation: This action plan provides a national blueprint to enhance existing systems; expand services for children, adolescents, and adults with autism spectrum disorder (ASD) and their families; and coordinate services across systems. The document discusses (1) achieving family and professional partnerships, (2) early and continuous developmental and medical screening for autism, (3) access to all needed ASD health, mental health, education, and social services, (4) organization of community-based services for easy use, (5) youth transition to adult services, work, and independence, and (6) appropriate financing of care. For each of these topic areas, a goal, challenges, and recommendations are presented.

Contact: Waisman Center for Mental Retardation and Human Development, University of Wisconsin, Madison, 1500 Highland Avenue, Madison, WI 53705-2280, Telephone: (608) 263-5776 Secondary Telephone: (608) 263-1656 Fax: (608) 263-0529 Web Site: http://www.waisman.wisc.edu Available from the website.

Keywords: Children with special health care needs, Adolescent, Adults, Autism, Community based services, Education, Families, Financing, Health care systems, Health services, Mental health, Program coordination, School to work transition, Service coordination, Social services, Transition planning, Youth in transition program

Wall T, Gilmer D. 2004. Maine Works for Youth! [Progress report]. Augusta, ME: Maine Works for Youth, 5 pp.

Annotation: This progress report described accomplishments of a project titled Maine Works for Youth, Maine's Healthy and Ready to Work phase II project. The program focuses on adolescents and young adults with special health care needs.The report is a bullet list of project accomplishments during the past 2 years. The project is a follow-up to the phase I project, Maine Adolescent Transition Partnership. [Funded by the Maternal and Child Health Bureau]

Contact: Maine Department of Health and Human Services, Children with Special Health Care Needs Program, 11 State House Station, Key Bank Plaza, 286 Water Street, Seventh Floor, Augusta, ME 04333, Telephone: (207) 287-5139 Secondary Telephone: (800) 698-3624 ext. 5139 Fax: (207) 287-5355 Web Site: http://www.maine.gov/dhhs/boh/cshn/

Keywords: Adolescent health, Adolescents, Adolescents with special health care needs, Employment programs, Maine: Transition to independent living, Reports, State programs, Transition planning, Young adults, Youth in transition programs

Washington State Department of Health, Adolescent Health Transition Project. 2003. Working together for successful transition: Washington State adolescent transition resource notebook. Olympia, WA: Adolescent Health Transition Project, Washington State Department of Health, ca. 350 pp.

Annotation: This notebook is a resource on transition from adolescence to young adulthood for young adults with special health care needs and disabilities.The notebook is geared toward families, students, school personnel, community agency workers, health professionals, and other groups working with adolescents and young adults in Washington State. The notebook is organized into the following sections: (1) transition overview, (2) the student, (3) school, (4) post-secondary education, (5) work, volunteering, community participation, (6) division of vocational rehabilitation, (7) community resources, (8) recreation, (9) legal matters, (10) Division of Developmental Disabilities, (11) Supplemental Security Income, (12) health, and (13) transition stories. The notebook contains one appendix that includes information on multicultural and translated resources, acronyms and definition, health insurance terms and definitions, sample forms, information on educational resources, and a transition guide for Washington State.

Contact: Washington State Department of Health, Office of Maternal and Child Health, Children with Special Health Care Needs Program, P.O. Box 47835, Olympia, WA 98504-7835, Telephone: (360) 236-3571 E-mail: [email protected] Available from the website.

Keywords: Adolescents with special health care needs, Community participation, Developmental disabilities, Education, Health, Legislation, Recreation, School to work transition, Schools, Students, Supplemental security income, Transition to independent living, Vocational rehabilitation, Volunteers, Washington, Young adults, Youth

Ireys H. 1994. Young adult users of services for children with special health care needs:Service utilization, psychological status, and developmental tasks [Final report]. Baltimore, MD: Johns Hopkins University, 49 pp.

Annotation: State Programs for Children with Special Health Care Needs have begun to recognize and address the pervasive difficulties that face chronically ill and handicapped older adolescents and young adults as they are discharged from these programs. Difficulties include problems in finding medical and related services responsive to their needs, inadequate financial coverage of needed services, psychological distress, and disincentives for vocational training or employment. At the present time, State programs lack the information needed for planning or developing services that would assist this population in their transition to adulthood. The general goal of this study was to help repair this deficit of knowledge through a survey of 1, 000 adolescents and young adults who use these programs. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB95-208625.

Keywords: Chronic Illnesses and Disabilities, Adolescents, Adolescents with Special Health care Needs, Children with Special Health care Needs, Data Collection, Health Care Financing, MCH Research, Research, Vocational Training, Youth in Transition

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The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.