Search Results: MCHLine

Annotation: This book explains the steps needed to plan and implement collaboration between community programs, agencies and individuals who provides services to children with disabilities and their families. This book was reprinted by the Georgetown University Child Development Center as a part of the Workbook Series for Providing Services to Children with Handicaps and Their Families.

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Keywords: Children with special health care needs, Collaboration, Community based services, Interagency cooperation

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: [email protected] Web Site: http://gucchd.georgetown.edu Price unknown.

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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

Keywords: Audiovisual materials, Child nutrition, Children with special health care needs, Health services, Videotapes

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

Annotation: The purpose of this project was to improve the health care delivered to children with rheumatic diseases in New England. [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 PB93-158707.

Keywords: Arthritis, Children with special health care needs, Community based services, Coordinated care, Interdisciplinary teams, Rheumatic diseases

Annotation: The goal of this project was the development of a multilevel model of care for infants with bronchopulmonary dysplasia that was cost effective, decreased length of hospital stays, and allowed for a physically, emotionally, socially, and developmentally healthier child. Inservice training for staff and parenting workshops were conducted as part of this project. [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 PB93-161966.

Keywords: Bronchopulmonary dysplasia, Children with special health care needs, Coordination of services, Infants, Length of stay, Ventilator dependent

Annotation: The goal of the project was to improve the functioning of special needs children and their families by providing locally based clinic and care coordination services in a rural area in Utah. The program objectives were to: (1) Involve parents of special needs children in developing a service plan for their child, (2) improve the implementation of service plans for rural special needs children, (3) improve coordination of services to rural special needs children, and (4) improve adequacy of services to these children. While maintaining current multidisciplinary clinic services, Children's Special Health Services worked through the local health department to place a nurse coordinator, secretary, social worker, and trained parent advocates in the local community. This team built upon existing local systems to improve the functional outcomes of the children. [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 PB97-121834.

Keywords: Access to Health Care, Advocacy, Children with Special Health care Needs, Chronic Illnesses and Disabilities, Community Based Health Services, Parents, Rural Population, Service Coordination

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.

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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

Annotation: This report summarizes discussions and takeaways from an expert panel conducted by NOHC of the University of Chicago to discuss challenges related to, opportunities for, and promising approaches to providing equitable oral health care for children with special health care needs (CSHCN). Topics include accessibility and accommodations, health professional training and education, dental insurance coverage policies, supporting families with oral health care guidance at home, innovative models and approaches, and future research needs.

Contact: NORC at the University of Chicago, 1155 East 60th Street, 2nd Floor, Chicago, IL 60637, Telephone: (773) 256-6000 Web Site: http://www.norc.org

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Keywords: Access to health care, Family support, Health education, Health insurance, Health services accessibility, Oral health, Research, Special health care needs, Training

Annotation: This resource provides individuals with special health care needs and their families with tools and strategies to advocate for whatever they may need. Topics include access to health care, accessible communities, advocacy and leadership skills, communicating about health, education services and support, insurance and financial assistance, legislation and political action, steps to employment success, transition to adulthood, and youth leadership.

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

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Keywords: Access to health care, Advocacy, Communication, Family support services, Leadership, Life course, Special health care needs, Transitions

Annotation: This videorecording documents a multi-state roundtable discussion on telehealth applications for individuals with hearing impairments, drawing participation from 31 states and territories. The presenters—McVicar (Utah), Stone (Massachusetts), Kirschner (Montana), Culpepper (Georgia), and Messersmith (South Dakota)—share diverse perspectives on teleaudiology implementation within Early Hearing Detection and Intervention (EHDI) programs, including universal newborn screening initiatives. Their presentations highlight both successes and persistent challenges: while telehealth expands access to specialized audiological services, barriers remain including geographic isolation, transportation costs, equipment accessibility, parental hesitation to engage with public health systems, and technical limitations for certain procedures like cochlear implant testing. The interactive format allowed participants to pose questions directly to presenters, and concluded with the sharing of a comprehensive resource website to support ongoing telehealth advancement for hearing-impaired populations across diverse regional contexts.

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: Telemedicine, Deafness, Developmental screening, Children with special health care needs, Youth with special health care needs, Utah, Massachusetts, Montana, Family support services, Georgia, South Dakota, Staff development

Annotation: This presentation by Marsha Quinn, Co-Executive Director of Parent to Parent USA (P2P USA), outlines how the organization virtually supports families of children with special needs. As a mother of two children, Quinn addresses MCH leaders about P2P USA's comprehensive support system, which includes providing resources and best practices, facilitating member communication through various platforms, offering Spanish language services, and organizing virtual events like Coffee Talks and webinars. The presentation emphasizes how Alliance Members provide virtual family support through family/professional partnerships, information sharing, and emotional support via one-on-one matches and virtual support groups. It also highlights the organization's commitment to diversity, equity, and inclusion, particularly in reaching underserved communities, and provides information on how families can connect with P2P programs both locally and nationally.

Contact: Parent to Parent USA , P.O. Box 9054, Austin, TX 78766, E-mail: [email protected] Web Site: http://www.p2pusa.org

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Keywords: Telemedicine, Family support services, Children with special health care needs, Youth with special health care needs

Annotation: This issue brief describes key characteristics of children with special health care needs and explores insurance affordability, adequacy of coverage, and benefits for children covered by Medicaid/CHIP compared to those with private insurance only. The brief provides a context for ongoing policy discussions around additional investments in Medicaid, including home and community-based services (HCBS), for children with special health care needs.

Contact: Henry J. Kaiser Family Foundation, 2400 Sand Hill Road, Menlo Park, CA 94025, Telephone: (650) 854-9400 Secondary Telephone: (202) 347-5270 Fax: (650) 854-4800 Web Site: http://www.kff.org

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Keywords: Children with special health care needs, Community based services, Health care costs, Health insurance, Home care, Medicaid, Public assistance, Special health care services, Statistics

Annotation: In this video presentation, AMCHP's Evidence and Implementation team discusses practical approaches for incorporating partners, families, and individuals with lived experience into program development and evaluation processes, with careful consideration of organizational resources and capabilities. Featured speaker Becky Burns, who serves as the Statewide Coordinator for Wisconsin Children and Youth with Special Health Care Needs, shares insights on implementing these engagement strategies effectively while working within the constraints of available organizational capacity.

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: Children with special health care needs, Youth with special health care needs, Epidemiology, Program evaluation, Staff development, Family support services

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

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

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

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.

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

Annotation: This policy brief examines how six states structure, finance and provide home health services that are designed to provide important home-based care and family supports, improve quality of care, and avoid costly, hospitalizations and institutionalized care. [Funded by the Maternal and Child Health Bureau]

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

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Keywords: Children with special health care needs, Home care services, Medicaid, State programs

Annotation: These guidelines were developed by a Curriculum Workgroup in June 2016, reviewed by FPSS Advisory in July 2016, and field-tested by FPSS practitioners and their supervisors in March 2017, with the program being administered through the University of Iowa Healthcare's Iowa Peer Support Training Program. This report outlines the comprehensive scope of practice for Family Peer Support Specialists (FPSS) in Iowa, organized into five main categories. It outlines comprehensive professional guidelines starting with core ethical responsibilities and professionalism, followed by family engagement strategies, teaching and support methods, advocacy and resource navigation, and additional optional training opportunities. Notable elements include maintaining confidentiality, utilizing personal lived experience, practicing trauma-informed care, providing documentation, supporting families through various systems, and offering practical assistance.

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: Iowa, Children with special health care needs, Family support services, Staff development

Annotation: From the 2020 AMCHP/SPARC Peer to Peer Exchange, this presentation outlines the comprehensive training program for Family Peer Support Specialists (FPSS) in Iowa, detailing four key components: a 25-hour in-person skills training covering essential topics like cultural responsiveness, boundaries, and advocacy; specific training tools including active listening skills and the "assertion sandwich" technique for communication; supervisor training focusing on workforce management and best practices; and continuing education opportunities in areas such as ethics, mental health, and trauma. The slides also describe the development of a credentialing process through the Iowa Board of Certification, noting that Iowa is among the few states offering FPSS credentials, with the program's role including training verification and exam administration. This structured approach ensures that FPSS professionals receive comprehensive preparation for supporting families while maintaining professional standards and continuing professional development.

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: Iowa, Children with special health care needs, Family support services, Staff development

Annotation: This presentation details the certification program for Family Navigators in Iowa, including its online curriculum covering 13 domains (from System of Care to Trauma-Informed Care), assessment methodology using a four-level proficiency scale (Aware to Proficient), and pilot project results showing significant growth in participant proficiency. The slides outline the program's formal certification and examination requirements, along with the reasons why certification (or recertification) should be sought. Positive outcomes of the program are also discussed, noting increased professional confidence and knowledge base among participants, while highlighting the Division's support through covering certification costs. This presentation was given at the 2020 AMCHP/SPARC Peer to Peer Exchange.

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: Iowa, Children with special health care needs, Family support services, Staff development