Search Results: MCHLine

Annotation: This case study examines how Iowa's Title V Children and Youth with Special Health Care Needs (CYSHCN) program has implemented the National Standards for Systems of Care to build family leadership and partnerships. The program, influenced by disability rights advocate Julie Beckett (mother of Katie Beckett, for whom the Medicaid waiver was named), uses the National Standards as a framework to ensure families are active partners in decision-making at all levels of care. Key initiatives include the Iowa Family Leadership Training Institute (IFLTI), which has trained over 50 parents and caregivers since 2016 in advocacy skills, and the Iowa Family Advisory Council (FAC), established in 2014 to guide policies and programs. The program utilizes both Version 1.0 and 2.0 of the National Standards to help families advocate within health systems and to assess program performance, with a particular focus on ensuring culturally and linguistically appropriate care coordination. The case study also demonstrates how embedding these standards throughout practices helps promote family perspectives in care systems and supports peer-to-peer family support networks.

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

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Keywords: Title V programs, Standards, Case studies, Iowa, Family support services, Children with special health care needs

Annotation: This glossary provides terms and definitions for acronyms used in the disability field.

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Keywords: Adolescents with special health care needs, Children with special health care needs, Dictionaries, Public health services, Rehabilitation, Special health care services

Annotation: This toolkit contains examples of strategies state Title V programs can use to address National Performance Measure 12: Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult care. Strategies are listed in these categories: (1) youth and family education and leadership development; (2) health care professional workforce development; (3) care coordination; (4) communications and social media; and (5) measurement and assessment. [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: [email protected] Web Site: http://www.amchp.org Available from the website.

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Keywords: Adolescents, Model programs, Resources for professionals, Special health care needs, State programs, Title V programs, Transition to adult services, Young adults

Annotation: This consensus study report provides a comprehensive analysis of health outcomes for school-aged children with disabilities. It reviews and assesses programs, services, and supports available to these children and their families and describes overarching program, service, and treatment goals. The report also examines outreach efforts and utilization rates; identifies which outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu

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Keywords: Access to care, Children with developmental disabilities, Children with special health care needs, Disabilities, Learning disabilities, Outcome evaluation, Outreach, Physical disabilities, School age children, Services

Annotation: This document offers information about federal programs that provide funding to health centers, states, academic institutions, and other entities to recruit, train, and retain health professionals, including dentists and dental hygienists, in efforts to increase access to oral health care. The document also highlights program efforts to establish benchmarks for the nation’s oral health status and for oral health care and to ensure that oral health care is available to people living with HIV/AIDS; mothers, children, and adolescents, including those with special health care needs; and those who receive care at health centers.

Contact: U.S. Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (888) 275-4772 Secondary Telephone: (877) 464-4772 Fax: (301) 443-1246 E-mail: [email protected] Web Site: http://www.hrsa.gov Available from the website.

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Keywords: Access to health care, Adolescents, Benchmarking, Children, Community health centers, Federal programs, HIV infected patients, Health care delivery, Health occupations, Health status, Low income groups, MCH services, Mothers, Oral health, Primary care, Quality assurance, Recruitment, Service integration, Special health care needs, State MCH programs, Training, Work force, Young adults

Annotation: This document defines the term "family leader" and describes the roles for family leaders in the Association for Maternal and Child Health Programs' activities. Topics include title, eligibility criteria, selection process, timeline, and duties.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Contact Phone: (202) 775-1472 Fax: (202) 478-5120 E-mail: [email protected] Contact E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

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Keywords: Collaboration, Community participation, Consultants, Employment, Families, Leadership, Mentors, Parent participation, Parent professional relations, Public private partnerships, Recruitment, Special health care services, State MCH programs, Teaching, Technical assistance, Title V programs, Training, Volunteers, Work force

Annotation: This brief examines the role of Medicaid in funding critical health-related services for students with disabilities. Topics include providing reimbursement for health care services that are necessary for students with disabilities to succeed in school and ensuring schools' compliance with Individuals with Disabilities Education Act requirements, helping students to stay healthy and succeed academically, and connecting students to coverage. The brief also describes the long-term benefits of Medicaid for eligible children and the potential impact of spending reductions on students, local communities, and state budgets. The appendix contains a table on state and federal Medicaid spending in schools.

Contact: Center on Budget and Policy Priorities, 820 First Street N.E., Suite 510, Washington, DC 20002, Telephone: (202) 408-1080 Fax: (202) 408-1056 E-mail: [email protected] Web Site: http://www.cbpp.org Available from the website.

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Keywords: Academic achievement, Chronic illnesses and disabilities, Eligibility, Enrollment, Medicaid, Reimbursement, Role, School health services, Schools, Special health care needs, State programs, Students

Annotation: This report provides a snapshot of Title V Children and Youth with Special Health Care Needs (CYSHCN) programs across the United States. Contents include background and history of CYSHCN programs, recent changes affecting CYSHCN programs, and methods and results from an electronic survey of Title V CYSHCN directors to assess key characteristics of each state's CYSHCN program. Topics include program structure and strengths, roles in systems of care, CYSHCN program partnerships, financing of care for CYSHCN populations and emerging issues for CYSHCN programs.

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.

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Keywords: Advocacy, Children with special health care needs, Community based services, Consultation, Cultural competency, Data, Family centered care, Financing, Health care delivery, Health care reform, Health care systems, Health insurance, Leadership, Medicaid managed care, Models, Networking, Pediatric care, Policy development, Program coordination, Program development, Public health infrastructure, Public private partnerships, Quality assurance, Reimbursement, Role, Standards, State MCH programs, Title V programs

Annotation: This series of handouts for pregnant women and parents of infants and young children provides simple tips on nutrition and oral health issues. Topics include brushing a young child’s teeth, choosing healthy drinks, encouraging children to drink water with fluoride, giving children healthy snacks, taking care of oral health for pregnant women, and taking care of an infant’s oral health. The series is written in simple language and is available in English and in Spanish. One handout, Using Silver Diamine Fluoride on Children's Teeth, is also available in Arabic, Chinese, Haitian Creole, Persian, and Somali.

Contact: National Center on Health, Behavioral Health, and Safety, Washington, DC Telephone: (888) 227-5125 E-mail: [email protected] Web Site: http://headstart.gov Available from the website.

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Keywords: Asian language materials, Chronic illnesses and disabilities, Consumer education materials, Fluorides, Infants, Injury prevention, Non Englishs language materials, Nutrition, Oral health, Oral hygiene, Pregnant women, Preventive health services, Spanish language materials, Special health care needs, Young children

Annotation: This document provides data on key indicators of oral health in Oregon for the period 2002 through 2015. Contents include a description of each indicator and the source and frequency of data available by year. Topics include preventive oral health services for pregnant women, toddlers, children, adolescents, and adults. Data on work force, Medicaid, cancer, cleft lip/palate, and water fluoridation are included.

Contact: Oregon Health Authority, Oral Health Program, 800 N.E. Oregon Street, Suite 850, Portland, OR 97232, Telephone: (971) 673-0348 Secondary Telephone: (971) 673-0372 Fax: (971) 673-0240 E-mail: [email protected] Web Site: https://public.health.oregon.gov/PreventionWellness/oralhealth/Pages/index.aspx Available from the website.

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Keywords: Adolescents, Adults, Children, Data sources, Medicaid, Oral health, Oral health care, Oregon, Population surveillance, Pregnant women, Preventive health services, Special health care needs, State surveys, Statistical data, Toddlers, Work force

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: [email protected] Web Site: https://childhealthdata.org Available from the website.

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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

Annotation: These disease/condition-specific tools were developed by internal medicine subspecialties to assist physicians in transitioning young adults with chronic diseases/conditions into adult care settings. Contents include sets of tools containing the following customized elements (at a minimum): transition readiness assessment, medical summary/transfer record, and self-care assessment. Sets of tools are available for the following subspecialties and diseases: general internal medicine, cardiology, endocrinology, gastroenterology, hematology, nephrology, and rheumatology. [Funded in part by the Maternal and Child Health Bureau]

Contact: American College of Physicians, 190 North Independence Mall West, Philadelphia, PA 19106-1572, Telephone: (215) 351-2400 Secondary Telephone: (800) 523-1546 Web Site: https://www.acponline.org Available from the website.

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Keywords: Assessment, Chronic illnesses and disabilities, Coordination, Medical records, Pediatric care, Self care, Special health care services, Transition planning, Young adults

Annotation: This report summarizes information on the burden of oral disease in Florida, highlights oral health disparities associated with specific populations, and describes resources and programs for improving oral health. Topics include state and national objectives, the societal and economic impact of oral disease, risk and protective factors, work force capacity and diversity, and use of oral health care.

Contact: Florida Department of Health, Public Health Dental Program, 4052 Bald Cypress Way, Bin A14, Tallahassee, FL 32399-1724, Telephone: (850) 245-4333 Web Site: http://www.floridahealth.gov/programs-and-services/community-health/dental-health/index.html Available from the website.

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Keywords: zzz, Access to health care, Adolescents, Children, Disease prevention, Florida, Health disparities, Health objectives, Health services delivery, Health status, Infants, Life course, Low income groups, Older adults, Oral health, Population surveillance, Pregnant women, Prevalence, Program improvement, Protective factors, Risk factors, Special health care needs, State initiatives, State programs, Statistical data, Work force

Annotation: This article describes the child neurologist's role in planning and coordinating successful transition from the pediatric to adult health care system for youth with neurologic conditions. Topics include eight common principles that define the child neurologist's role in a successful transition process as outlined by a multidisciplinary panel, the evidence for successful transition models, and areas for future consideration. [Funded by the Maternal and Child Health Bureau]

Contact: American Academy of Neurology, 1080 Montreal Avenue, Saint Paul, MN 55116, Telephone: (651) 695-2717 Secondary Telephone: (800) 879-1960 Fax: (651) 695-2791 E-mail: [email protected] Web Site: http://www.aan.com Available from the website.

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Keywords: Adolescents, Family support services, Financing, Health care systems, Interdisciplinary approach, Leadership, Legal issues, Model programs, Multidisciplinary teams, Neurologic disorders, Program coordination, Special health care needs, Transition planning, Young adults

Annotation: This resource is designed to assist states and communities in developing a coordinated response to the immediate and long term needs of infants and children affected by Zika virus (ZIKV), and their families. Contents include an overview of ZIKV, infection, and outcomes; systems of care as a public health approach for comprehensive care for infants and children exposed to ZIKV; and an overview of federal and state programs serving children affected by ZIKV. [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, Secondary Telephone: (833)852-6262 Web Site: https://mchb.hrsa.gov Available from the website.

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Keywords: Assessment, Child health, Community coordination, Comprehensive health care, Emergency medical services for children, Federal programs, Health care systems, Infant health, Infection control, Neonatal screening, Policy development, Population surveillance, Program coordination, Program planning, Quality assurance, Resources for professionals, Service coordination, Service integration, Special health care needs, State programs, Systems development, Virus diseases, Work force

Annotation: This fact sheet for Title V programs, clinicians, and family leaders provides information about the potential effect of Medicaid and Children's Health Insurance Program (CHIP) managed care on children and youth with special health care needs (CYSHCN) and their families. Topics include requirements for managed care organizations in CHIP and opportunities to mitigate potential unintended negative consequences of Medicaid managed care for CYSHCN and their families. Promising practices and strategies from states are included. [Funded by the Maternal and Child Health Bureau]

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://www.aap.org/en/practice-management/medical-home Available from the website.

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Keywords: Children, Contract services, Enrollment, Family centered care, Health care delivery, Health care reform, Medicaid managed care, Medical home, Model programs, Primary care, Service delivery systems, Special health care needs, State MCH programs, Youth

Annotation: This report discusses various roles, and activities within these roles, of families who are in paid positions as staff or consultants to state Title V maternal and child health (MCH) and children and youth special health care needs (CYSHCN) programs. Topics include roles for family engagement in the Title V Block Grant guidance; depth of engagement (family roles along a continuum); roles and activities by level of engagement (input, partnership, service provision, policy-level leadership); and family engagement in Title V needs assessment activities.

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.

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Keywords: Collaboration, Community participation, Consultants, Employment, Families, Leadership, Mentors, Needs assessment, Parent participation, Parent professional relations, Policy development, Public private partnerships, Quality assurance, Special health care services, State MCH programs, Title V programs, Training, Work force

Annotation: These resources provide information about cancer in adolescents and young adults ages 15–39. Topics include types of cancers in young people, finding a doctor and hospital, treatment choices, coping and support, after treatment, and organizations serving adolescents and young adults. Reports, research, literature, and a quiz are also available.

Contact: National Cancer Institute, 6116 Executive Boulevard, Suite 300, Bethesda, MD 20892-8322, Telephone: (800) 422-6237 Secondary Telephone: Fax: (301) 402-0555 E-mail: [email protected] Web Site: http://www.cancer.gov Available from the website.

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Keywords: Access to health care, Adolescents, Cancer, Consumer education materials, Disease management, Family support services, Financial support, Peer support programs, Research, Resources for professionals, Special health care needs, Young adults

Annotation: This brief presents findings from interviews with family leadership organization staff in Colorado, New Jersey, Oregon, Rhode Island, and Vermont about health insurance coverage and health care financing and the experiences of children with special health care needs (CSHCN), their families, and their communities. Topics include coverage and financing barriers experienced by families raising CSHCN and strategies used to overcome them, including expanded outreach, language services, and interagency partnerships. [Funded by the Maternal and Child Health Bureau]

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.

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Keywords: Adolescents, Barriers, Children, Families, Family support services, Health care financing, Health insurance, Interagency cooperation, Outreach, Special health care needs, State surveys, Young adults

Annotation: These case studies highlight the work and accomplishments of state health agencies in Massachusetts and Missouri related to addressing chronic health conditions in the school environment. Topics include collaborating with health and education partners; strengthening school nursing infrastructure and health services, including oral health care; identifying and tracking students with chronic health conditions; and meeting management and care needs of students with chronic health conditions.

Contact: National Association of Chronic Disease Directors, 2200 Century Parkway, Suite 250, Atlanta, GA 30345, Telephone: (770) 458-7400 Web Site: https://chronicdisease.org Available from the website.

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Keywords: Case studies, Chronic illnesses and disabilities, Collaboration, Disease management, Massachusetts, Missouri, Public health infrastructure, School age children, School health services, School nursing, Schools, Special health care needs, State health agencies