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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 (413 total).

MetroHealth Medical Center, Pediatric Service Coordination Program. n.d.. Working with your health insurance. Cleveland, OH: MetroHealth Medical Center, Pediatric Service Coordination Program, 16 pp.

Annotation: This booklet provides information and forms to help families work with their health insurance companies. It includes questions to ask the insurance company and billing office, tips for keeping records of bills and claims, and who to talk with for assistance. A glossary of terms and list of publications on health insurance are included. Resource organizations in Cuyahoga County and the state of Ohio are also listed. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Family centered, community based care, Health care financing, Insurance, Medical records

National Maternal and Child Health Resource Center. n.d.. A national goal: Building service delivery systems for children with special health care needs and their families—Family centered community based coordinated care. Iowa City, IA: National Maternal and Child Health Resource Center, 9 pp.

Spack J. n.d.. Reducing Children's Exposure in Family Day Care Settings to Environmental Tobacco Smoke: [Final report]. Boston, MA: Massachusetts Health Research Institute, 29 pp.

Annotation: Environmental tobacco smoke (ETS) has been proven harmful to those who live with smokers, especially infants and children. This project worked with three culturally diverse, lower socioeconomic status communities to develop appropriate materials to educate family day care providers, parents, and children about the importance of a smoke-free environment. In addition, the project built local community networks to continue this commitment after the project was completed. [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 PB93-198380.

Keywords: Preschoolers, Caregivers, Child care, Family child care, Parents, Respiratory Illnesses, Smoking

Berman C. n.d.. Project Zero to Three: [Final report]. Washington, DC: National Center for Clinical Infant Programs, 48 pp.

Annotation: The main goal of this project was to improve services for infants and toddlers with disabilities (or at risk for disabililties) and for their families by developing an interstate network for early identification and intervention services for this population. Activities included a national network meeting, two regional conferences, an intensive course, small topical meetings, consultations, publications, and a newsletter. [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 PB92-103373.

Keywords: American Public Welfare Association, Children', Collaboration of Care, EPDST, Early Intervention, Environmental Risk, Families, Family-Based Health Care, Healthy Mothers Healthy Babies Coalition, High risk infants, Networking, PL 99-457, WIC Program, s Defense Fund

Magrab P. n.d.. Networking and Community-Based Services for Children with Special Needs: [Final report]. Washington, DC: Georgetown University Medical Center, 45 pp.

Annotation: This project sought to achieve comprehensive, coordinated, community-based services for children with special health needs and their families through improved collaboration among parents and public and private agencies at all levels within the service delivery system. Activities included maintaining a network of States, facilitating coalitions within States, brokering technical assistance, organizing conferences, and developing materials on topics such as the financing of services, service provision to culturally diverse groups, rural services, and collaboration between mental health professionals and other health care providers. [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 PB93-147130.

Keywords: Child Care, Chronically Ill, Collaboration of Care, Community-Based Health Care, Families, Family-Based Health Care, Financing, Grandparents, Medicaid, Networks, Parent Support Groups, Parents, Rural Population

Nelson R. n.d.. Analysis and Expansion of Community-Based Interagency Collaborative Efforts: [Final report]. Iowa City, IA: University of Iowa, 51 pp.

Annotation: This study sought to document, evaluate, and disseminate information about two community-based projects designed as models of collaborative interagency service provision for children and families. The project developed a set of recommendations for collaborative efforts, addressing procedure as well as policy and organization. [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 PB93-152890.

Keywords: Children with special health care needs, Collaboration, Community-Based Health Care, Family centered, Fragmentation of Services, Health Professionals, Interagency cooperation, community based care

Nicol P. n.d.. Coordinated Community-Based Services: [Final report]. Frankfort, KY: Division of Maternal and Child Health, Department for Health Services, Kentucky Cabinet for Human Resources, 39 pp.

Annotation: The principle aim of this project was to demonstrate a coordinated, community-based program model for the screening, evaluation, and treatment of children from birth to five years of age with developmental disabilities, children at risk for them, and for their families. [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 PB93-152932.

Keywords: Children with special health care needs, Collaboration, Developmental disorders, Early intervention, Family centered care, Interagency cooperation, community based care

Diaz de Ortiz M. n.d.. Caguas Crippled Children Service Network [Final report]. Caguas, PR: Caguas Regional Hospital, 33 pp.

Annotation: The goal of this project was to develop an optimum habilitation and/or rehabilitation process for children (ages birth to 21 years) with special health needs, within Puerto Rico's Caguas Health Region. The principal outcomes of this project were the development of an electronic central register for patients with special health needs in the Caguas Health Region, and the interagency work agreement and interagency referral form, which have enabled project staff and Pediatric Center personnel to share information and coordinate services with other government service providers from central and local levels. [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 PB93-198901.

Keywords: Children with special health care needs, Chronically Ill, Collaboration of Care, Community-Based Health Care, Confidentiality, Families, Family-Based Health Care, Habilitation, Home Visiting, Referrals, Rehabilitation

Johnson C. n.d.. Making It Work for Children with Special Needs: The Family, the Community, the State [Final report]. Morgantown, WV: W. G. Klingberg Center for Child Development, 17 pp.

Annotation: The goal of this project was to improve the overall system of health care delivery for West Virginia children with special health needs. Specific goals were to: (1) Provide individualized family empowerment training with specific emphasis on skills in case management; (2) strengthen the Handicapped Children's Services system of case management; (3) provide coordinated, comprehensive medical and educational evaluations for children with special health needs; (4) establish a movement recognizing parents as equal partners within the professional team; (5) enhance networking through a parent-provider interdisciplinary, interagency conference; (6) identify a primary medical home for every child with special health needs; (7) emphasize the role of the primary care physician as a member of the community team; (8) assure continuation of the project beyond the funding period; and (9) expand services to all children with special health needs in West Virginia. [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 PB97-121867.

Keywords: Access to Health Care, Case Management, Children with Special Health care Needs, Families, Family Professional Collaboration, Interagency Cooperation, Medical Home, PL 99-457, Parent Professional Communication, Parents, Primary Care, Service Coordination

n.d.. Handicapped Children's Resource Center [Final report]. Saipan, MP: Northern Mariana Islands Department of Public Health and Environmental Services, 12 pp.

Annotation: The goal of this project was to reduce the barriers to obtaining health and educational services for children with special health needs by providing a community-based, family-oriented system of comprehensive and coordinated services. Strategies included increasing community awareness of services; establishing interagency collaboration; and developing a centralized data collection system related to health status, service, and educational needs. [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 PB93-196954.

Keywords: Children with special health care needs, Community-Based Health Care, Data Collection, Family-Based Health Care

Danielson C. n.d.. Healthy Foundations [Final report]. Des Moines, IA: Iowa Department of Public Health, 51 pp.

Annotation: The project's goals were to: (1) Develop and implement structures and processes in defined community areas to plan and implement a family-centered, community-based health care delivery system for children; (2) develop data system capacity and function statewide to ensure family-centered, community-based primary care services for children; and (3) share experiences in family-centered, community-based system change in the area of primary health care for children with other State, regional, and national maternal and child health providers. At the State level, strategies were directed toward developing a system of children's primary health care delivery that was family centered and community based. At the local level, child health steering committees in established projects were to continue to plan and implement child health system changes in their service areas. [Funded by the Maternal and Child Health Bureau]

Keywords: Access to Health Care, Child Mortality, Community Based Health Services, Databases, Family Centered Health Care, Information Systems, Primary Care, Standards of Care, State Programs

Johnson J. n.d.. Parent-Pediatric Partnerships: Strengthening Families to Make the Vulnerable Invincible [Final report]. Honolulu, HI: Hawaii Department of Health, 16 pp.

Annotation: This project was a partnership between families and their medical home to develop a demonstration model for care coordination for environmentally at-risk infants and toddlers in low-income culturally diverse urban and rural settings. The families were being served as part of the eligible population under P.L. 99–457, with an individualized family support plan (IFSP) developed for each family. The target population included many families of different ethnic origins. [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 PB99-133969.

Keywords: Access to Health Care, Children with Special Health care Needs, Cultural Diversity, Families, Family Centered Health Care, Family Support Programs, Hawaiians, Health Promotion, Healthy Tomorrows Partnership for Children, Low Income Population, PL 99-457, Parents, Preschool Children, Primary Care, Rural Population, Service Coordination, Urban Population

Family Voices, IMPACT. n.d.. The Affordable Care Act (ACA): Prevention and health promotion for everybody!. Albuquerque, NM: Family Voices, IMPACT, 2 pp.

Annotation: This document encourages families to partner with health professionals on getting preventive health services and to take a lead role in promoting health at home and where they live, work, and play. Topics include how information sharing between families and health professionals can promote child health, the Affordable Care Act's preventive health services for children, the Bright Futures initiative, and tips for a healthy lifestyle. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Bright Futures, Child health, Children, Families, Family centered care, Health care reform, Health promotion, Parent professional relations, Patient Protection and Affordable Care Act, Preventive health services, Public private partnerships, Special health care needs

CrossBear S, LeGore S. n.d.. Family involvement in child-serving systems and the need for cross-system collaboration. Rockville, MD: U.S. Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Treatment, 10 pp.

Annotation: This brief reviews what has been accomplished to date in the development of the family voice in all child-serving systems including substance abuse, mental health, child welfare, juvenile justice, trauma support, education, and primary care. The review indicates what needs to occur to create true cross-systems collaboration supporting family involvement, so that youth and their families can fully access the service and supports they need to obtain and maintain optimum health.

Contact: U.S. Substance Abuse and Mental Health Services Administration, One Choke Cherry Road, Rockville, MD 20857, Telephone: (877) SAMHSA-7 Secondary Telephone: (877) 726-4727 E-mail: Web Site: https://www.samhsa.gov Available from the website.

Keywords: Child health, Child welfare, Collaboration, Families, Family centered care, Health care systems, Interagency cooperation, Parent professional relations, Service coordination, Service delivery systems

Child and Adolescent Health Measurement Initiative. 2024. Shared care planning for children with special health care needs. Baltimore, MD: Child and Adolescent Health Measurement Initiative,

Annotation: This online resource includes shared care planning tool for families of children with special health care needs (CSHCN) and a 5-item screening tool to identify CSHCN based on the definition provided by the federal Maternal and Child Health Bureau. A searchable library contains reports, data and research briefs, presentations, project summaries, and additional materials aimed at promoting lifelong health for children, youth, and families using family-centered measurement, data and tools.

Contact: Child and Adolescent Health Measurement Initiative, The Johns Hopkins Bloomberg School of Public Health, Department of Population, Family, and Reproductive Health, 615 North Wolfe Street, Baltimore, MD 21205, E-mail: [email protected] Web Site: http://www.cahmi.org

Keywords: Adolescent health, Adolescents with special health care needs, Child health, Children with special health care needs, Data , Family centered care, Screening tests, Surveys

American Academy of Pediatrics . 2022. Providing family centered care . Itasca, IL: National Resource Center for Patient/Family-Centered Medical Home,

Annotation: This online resource for health care practices describes the characteristics of family centered care; provides tools to assist practices in implementing family centered care; and links to patient education materials and assessment forms (in both English and Spanish) to give to families and caregivers. The site also includes a video presentation on family centered care within the medical home.

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

Keywords: Adolescent health, Child health, Family centered care, Medical home

Silow-Carroll S, DuPlessis H, Henry E, Di Paola S. 2021. COVID-19 policy flexibilities affecting children and youth with special health care needs: What to keep, modify, or discard?. Palo Alto, CA: Lucile Packard Foundation for Children's Health; Lansing, MI: Health Management Associates, 63 pp.

Annotation: This report identifies key policy flexibilities enacted during the COVID-19 public health emergency. It summarizes stakeholders' perspectives about the impact of the pandemic and policy flexibilities on children and youth with special health care needs and their families and providers. The authors present recommendations for continuing or ceasing temporary policy changes after the public health emergency, as well as new policies and actions to best support children and youth with special heath care needs and their families.

Contact: Lucile Packard Foundation for Children's Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301, Telephone: (650) 497-8365 E-mail: [email protected] Web Site: http://www.lpfch.org

Keywords: Access to health care, Children with special health care needs, Family support, Federal initiatives, Infectious diseases, Medicaid, Mental health, Telehealth, Virus diseases, Work force

Gears H, Casau A, Buck L, Yard R. 2021. Accelerating child health care transformation: Key opportunities for improving pediatric care. Hamilton, NJ: Center for Health Care Strategies, 37 pp.

Annotation: This report provides practical recommendations for providers, payers, and policy makers to consider in adopting approaches to transform child health care delivery. The report is a product of the Accelerating Child Health Transformation initiative, which works to identify, test, and disseminate a comprehensive and adaptable set of blueprints that can be used to transform child health care services to lead to improved child and family well-being, as well as racial equity. The Center for Health Care Strategies identified three key strategies that are integral to child health care transformation: adopting anti-racist practices and policies to advance health equity; co-creating equitable partnerships with patients, families, and providers; and identifying family strengths and addressing health-related social needs to promote resilience.

Contact: Center for Health Care Strategies, 200 American Metro Boulevard, Suite 119, Hamilton, NJ 08619, Telephone: (609) 528-8400 Fax: (609) 586-3679 Web Site: http://www.chcs.org

Keywords: Access to health care, Child health, Family centered services, Family health, Family support programs, Health care disparities, Health status disparities, Policy development

Anderson KA, Rast JE, Roux AM, Garfield T, Shattuck PT. 2020. National autism indicators report: Children on the autism spectrum and family financial hardship. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 47 pp.

Annotation: This report focuses on the financial hardships facing families raising children on the autism spectrum. It discusses disability and sociodemographic characteristics of children with autism spectrum disorders, levels of family financial hardship, and safety net program use. 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 Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Children with special health care needs, Family support services, Financial barriers, Financial support, Statistics

Goldfarb F, Levitz B, Hernancez J, DeMaio S, Smith MA, Ortman D, Felty w, Seuer S, and Russo L. 2019. Fabric not fringe: Weaving family involvement throughout training and practice for professionals and advocates working with individuals with disabilities and special health csre needs. Silver Spring, MD: Association of University Centers on Disabilities, 27 pp.

Annotation: This white paper approaches family involvement from the perspective of the family discipline itself, and the ongoing paradigm shift in family-centered care--from fringe to fabric. This document includes a summary of the history of family involvement in the LEND network and a series of 8 individual handouts which detail the definition, need, benefits, resources and strategies associated with each type of family involvement.

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

Keywords: Children with developmental disabilities, Family centered care, Parent participation

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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.