Skip Navigation

Strengthen the Evidence for Maternal and Child Health Programs

Sign up for MCHalert eNewsletter

Children with Special Health Care Needs: Guidelines and Standards Bibliography

Children with Special Health Care Needs: Guidelines and Standards

Bibliography of Materials from MCHLine®

This bibliography of 17 items is drawn from MCHLine®, the MCH Digital Library online catalog. It includes selected materials published in the last ten years that discuss guidelines and standards of care for children with special health care needs.

The MCH Digital Library focuses on publications from federal and state agencies, from grantees of federal and state agencies, and from professional and voluntary organizations. It contains unique materials on the history of maternal and child health in the United States, policy papers, reports, conference proceedings, manuals, survey instruments, guidelines, and curricula. The library does not collect materials on clinical medicine. Consumer health materials and commercially published materials are collected very selectively.

Displaying 17 records.

National Resource Center for Health and Safety in Child Care; American Academy of Pediatrics (AAP), American Public Health Association (APHA). 2022. Stepping stones to caring for our children: National health and safety performance standards–Guidelines for early care and education programs: Protecting children from harm (updated ed.). Denver, CO: University of Colorado Health Sciences Center, National Resource Center for Health and Safety in Child Care, Various

Annotation: These guidelines contain a set of standards to advance the quality and safety of early care and education environments. It is a companion to Caring for Our Children: National Health and Safety Performance Standards -- Guidelines for Early Care and Education Programs, 3rd edition. Included are new and updated standards on on safe sleep, handling and feeding of human milk, introducing solid foods to infants, monitoring children's development, unimmunized children, preventing expulsions, and availability of drinking water. [Funded by the Maternal and Child Health Bureau]

Keywords: Child care, Child care centers, Children with special health care needs, Facilities, Health promotion, Learning activities, Management, Nutrition, Out of home care, Personnel, Prevention, Safety, Spanish language materials , Standards

VanLandeghem K, Sloyer P, Gabor V, Helms V. 2017. Standards for systems of care for children and youth with special health care needs version 2.0. [Washington, DC]: Association of Maternal and Child Health Programs; [Palo Alto, CA]: Lucile Packard Foundation for Children's Health, 32 pp.

Annotation: This revision of the National Standards for Children and Youth with Special Health Care Needs has been created to increase the readability and ease of use of the first version of the National Standards while also maintaining their integrity and essential content. It builds upon the critical domains, elements, and standards from the original National Standards work (Version 1.0), while streamlining content for easier use by states and stakeholders. It covers Family Professional Partnerships and Insurance and Financing as foundational standards that should exist in any system that serves CYSHCN, and is divided into eight domains: (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.

Keywords: Adolescents, EPSDT, Health care systems, Measures, National initiatives, Quality assurance, Special health care needs, Standards: Children, Young adults

VanLandeghem K, Sloyer P, Gabor V, Helms V. 2014. Developing structure and process standards for systems of care serving children and youth with special health care needs. [Washington, DC]: Association of Maternal and Child Health Programs; [Palo Alto, CA]: Lucile Packard Foundation for Children's Health, 31 pp.

Annotation: This white paper from the National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs Project describes how the project has been conducted, highlights findings from project research on capacity and performance of systems of care serving children and youth with special health care needs (CYSHCN) and lists recommendations from key stakeholders. The paper also includes case studies of four sites that are using system standards in their work with CYSHCN, in Iowa, Michigan, Rhode Island, and Texas. The standards are available in a separate companion document.

Keywords: State programs, Adolescents, Health care systems, National initiatives, Special health care needs, Standards: Children, Young adults

VanLandeghem K, Sloyer P, Gabor V, Helms V. 2014. National standards for systems of care for children and youth with special health care needs. [Washington, DC]: Association of Maternal and Child Health Programs; [Palo Alto, CA]: Lucile Packard Foundation for Children's Health, 37 pp.

Annotation: This resource provides a set of standards of care for children and youth with special health care needs (CYSHCN) that can be used or adapted by systems and organizations that serve CYSHCN, including state Title V programs, state Medicaid programs, health plans, health professionals, and family/consumer groups to improve quality of care and outcomes for CYSHCN. The standards are divided into eight domains: (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.

Keywords: Adolescents, EPSDT, Health care systems, Measures, National initiatives, Quality assurance, Special health care needs, Standards: Children, Young adults

Lynch EW, Hanson MJ, eds. 2011. Developing cross-cultural competence: A guide for working with children and their families. (4th ed.). Baltimore, MD: Paul H. Brookes Publishing Company, 546 pp.

Annotation: This book presents information about the range of cultures within the United States, and advice about developing cultural competence in order to work with families of differing origins. The book gives the cultural perspectives of families of Anglo-European, Native American, African American, Latino, Asian, Philipino, Hawaiian, Samoan, Middle Eastern, and South Asian origin. For each culture, the book lists bibliographies, beliefs, values, practices, cultural courtesies, and significant cultural events. The intended audience is health or social services professionals working with children with special health needs. Concluding sections include suggested readings and resources, and author and subject indexes.

Keywords: American Indians, Asian Americans, Blacks, Children with special health care needs, Cultural competence, Ethnic groups, Hispanic Americans, Pacific Americans

Connecticut Department of Public Health. 2010. Directions: Resources for your child's care—Connecticut edition (rev. ed.). Hartford, CT: Connecticut Department of Public Health, 124 pp.

Annotation: This resource for parents of children with special health care needs (CSHCN) includes ways to organize children's health information, information about caring for children's special needs, resources, and tips from other parents of CSHCN. The resource includes many forms that parents can fill out. It also contains a list of links to Connecticut state and national organizations. It is available in English and Spanish.

Keywords: Children with special health care needs, Connecticut, Consumer education materials, Medical records, Resource materials, Spanish language materials, State initiatives

Donoghue EA, Kraft CA, eds. 2010. Managing chronic health needs in child care and schools: A quick reference guide. Elk Grove Village, IL: American Academy of Pediatrics, 214 pp.

Annotation: This book is designed to serve as a quick reference that addresses a variety of common chronic health problems that children face. The first half of the book provides background on the services and systems that support the care of children with chronic medical conditions and special health care needs, discusses the treatment team, reviews different types of care plans and methods for implementing a care plan, and addresses new conditions and signs of concern. The second half of the book consists of condition-specific quick-reference sheets.

Keywords: Child health, Children with special heath care needs, Chronic illnesses and disabilities, Health care, Health care systems, Health services, Treatment

Association of Maternal and Child Health Programs. 2009. Models of care for children and youth with special health care needs: Promising models for transforming California's system of care. Washington, DC: Association of Maternal and Child Health Programs, 55 pp.

Annotation: This report provides a range of models of care for children and youth with special health care needs that the Lucille Packard Foundation for Children's Health can review and discuss as a starting point for mapping out a strategy to support a transformation of the system of care. The report discusses models of care, the importance of integrated services, the medical home, care coordination, cultural competence, family-centered care and family involvement, transition, palliative and respite care, financing of care, and health information technology.

Keywords: Financing, Adolescents with special health care needs, Children with special health care needs, Cultural competence, Families, Health care systems, Medical home, Palliative treatment, Respite care, Service coordination, Service integration, Transition to independent living

Goode TD. 2009. Promoting cultural diversity and cultural competency: Self-assessment checklist for personnel providing services and supports to children with disabilities and special health needs and their families [rev. ed.]. Washington, DC: Georgetown University, Center for Child and Human Development, 4 pp.

Annotation: This self-assessment checklist, which is geared for personnel providing services and supports to children with disabilities and special health care needs and their families, is designed to heighten the awareness and sensitivity of personnel to the importance of cultural diversity and cultural competence in human service settings. The checklist provides concrete examples of the kinds of values and practices that foster such an environment. The checklist includes questions in the following categories: (1) physical environment, materials, and resources; (2) communication styles; and (3) values and attitudes. Information about how to use the checklist is also provided.

Keywords: Children with special health care needs, Cultural diversity, Cultural sensitivity, Culturally competent services, Disabilities, Families, Guidelines, Health personnel, Human services, Questionnaires

Perlman SP, Friedman C, Fenton SJ. 2008. A caregivers guide to good oral health for persons with special needs. Washington, DC: Special Olympics, 18 pp.

Annotation: This guide presents information for caregivers on helping individuals with special health care needs practice behaviors for maintaining optimal oral health. Instructions for toothbrushing, mouthrinsing, and flossing are provided, including adaptations for meeting the needs of individuals with various cognitive and physical abilities. Common oral health problems are also addressed.

Keywords: Adults, Children, Children with special health care needs, Dental hygiene, Development, Infants, Oral health, Prevention

Massachusetts Consortium for Children with Special Health Care Needs, Care Coordination Work Group. 2005. Care coordination: Definitions and principles (rev. ed.). Boston, MA: Care Coordination Work Group, Massachusetts Consortium for Children with Special Health Care Needs, 3 pp.

Annotation: This fact sheet presents definitions and principles associated with care coordination for children and youth with special health care needs and their families. The fact sheet offers a definition of care coordination; presents several principles of care coordination, including accessibility, individualization, and aligning with the family; discusses outcomes of care coordination; and presents the stages of the care coordination process and associated activities.

Keywords: Accessible facilities, Adolescents with special health care needs, Children with special health care needs, Families, Guidelines, Program coordination, Service coordination

Minnesota Department of Health, Community and Family Health Division. 2005. Minnesota guidelines of care for families with children who have a hearing loss: A guide to information and resources. St. Paul, MN: Community and Family Health Division, Minnesota Department of Health, 91 pp.

Annotation: These guidelines, which are intended as a resource tool for Minnesota families with a child who is deaf or has hearing loss, contain information about hearing, hearing loss, and medical and educational interventions; child development; tips for parents; definitions; and resources. The guidelines provide information about connecting with other families of children with hearing loss, understanding clinical procedures and health professionals' roles, choosing communication methods, understanding and finding services, locating financial assistance and insurance coverage, accessing educational services, understanding parents' and children's rights, and finding support systems and programs. [Funded in part by the Maternal and Child Health Bureau]

Keywords: Child development, Children, Children's rights, Communication, Deafness, Educational programs, Families, Family support programs, Guidelines, Health care services, Health insurance, Hearing disorders, Intervention, Parent rights

Pipes P, Lucas B. 2005. Guidelines for the development and training of community-based feeding teams in Washington State. (Upd. ed.). Olympia, WA: Washington State Department of Health, Office of Children with Special Health Care Needs, 26 pp.

Annotation: This manual provides guidelines for coordinating activities among community-based nutrition services in Washington State that care for children with special health needs. Since many different services are involved in this process, these guidelines use a team approach to resolve conflicts that result from other service models. The authors provide an overview of the team approach and review the steps involved in establishing and training the community feeding teams. Appendixes include models, training agendas, mission statements, and other materials related to establishing the teams.

Keywords: Children with special health care needs, Community-based services, Guidelines, Interagency cooperation, Nutrition, Service coordination

Georgia Department of Human Resources, Division of Public Health. 2004. Transition at age 3: Steps for success—A guide for Georgia children with disabilities, their families, Babies Can't Wait early intervention services, schools, and community programs. Atlanta, GA: Division of Public Health, Georgia Department of Human Resources, 52 pp.

Annotation: This guide focuses on children's transition from Georgia's Early Intervention/Babies Can't Wait program (which serves infants and children from birth through age 3) into preschool services and other options for children ages 3-5. The guide is geared toward parents of infants and children with special health care needs, Babies Can't Wait personnel and providers, local education agency personnel, and community agencies serving young children in Georgia. The guide provides guiding principles, recommended practices, and tools to promote smooth and effective transitions for all young children and their families. Lists of terms and acronyms are included, as are lists of recommended readings and national resources.

Keywords: Children with special health care needs, Community agencies, Community programs, Early intervention, Families, Georgia, Infants, Infants with special health care needs, Parents, State programs, Transitions, Young children

Ochlmann ML. 2004. Improving managed care for children with special needs: A best clinical and administrative practices toolkit. Lawrenceville, NJ: Center for Health Care Strategies, 59 pp.

Annotation: This tool kit reflects the experiences of the Improving Managed Care for Children with Special Needs Workgroup -- 11 health plans and a primary care case management program that collaborated over 24 months to develop, pilot, and refine best practice models for serving this population. The tool kit describes the workgroup's experiences using the Best Clinical and Administrative Practices (BCAP) Quality Framework. The tool kit also includes case studies of health plan pilot projects and resources they have agreed to share with other managed care organizations. Topics include (1) improving quality for children with special needs, (2) the BCAP Quality Framework, (3) needs assessment, (4) identification, (5) stratification, (6) outreach, (7) intervention, and (8) applying the BCAP Quality Framework: health plan case studies. The tool kit also includes a directory of online tool kit resources.

Keywords: Case studies, Children with special health care needs, Intervention, Managed care, Model programs, Needs assessment, Outreach, Primary care, Quality assurance, Resource materials

Special Olympics, Healthy Athletes, Special Smiles. 2004. Local clinical director's handbook (rev. ed.). [Washington, DC]: Special Olympics, Healthy Athletes, Special Smiles, 49 pp.

Annotation: This booklet provides information for volunteers about implementing Special Olympics, Healthy Athletes, Special Smiles' oral health screening events. Topics include volunteer recruitment and responsibilities, research data collection, fundraising, supply management, and publicity. The appendix includes contact information and master forms and handouts.

Keywords: Adolescents, Adolescents with special health care needs, Children with special health care needs, Oral health, Resources for professionals, Screening, Special health care services, Training materials, children

White JA, Beltran ED, Perlman S. 2004. Training manual for standardized oral health screening (rev. ed.). Atlanta, GA: Centers for Disease Control and Prevention, National Center for Chronic Disease and Health Promotion, Oral Health Division, 42 pp.

Annotation: This manual provides guidelines for collecting consistent oral health data from athletes during Special Olympics, Healthy Athletes, Special Smiles screenings. The manual discusses the importance of data standardization and presents information for coordinators, screeners, and recorders. The Healthy Athletes Software System form, instructions for training sessions, practice tests, a data cover sheet, and contact information are also included.

Keywords: Adolescents, Adolescents with special health care needs, Children, Children with special health care needs, Data collection, Manuals, Oral health, Resources for professionals, Screening, Special health care services, Training materials

The MCH Library is one of six special collections at Georgetown University, the nation's oldest Jesuit institution of higher education. The library is supported through foundation, private, university, state, and federal funding. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by Georgetown University or the U.S. Government. Note: web pages whose development was supported by federal government grants are being reviewed to comply with applicable Executive Orders.