Annotation: This report sets forth the framework for the achievement of the Healthy People 2010 objectives for children with special health care needs (CSHCN) and their families. Report sections about each of the six performance outcomes outlined in the National Agenda for Children with Special Health Care Needs (published in 1998) are used as the context for providing information from a sample of state Title V programs on their current capacity to measure progress and accomplishments in developing community systems of care for CSHCN. The performance outcomes cover these topics: medical homes, adequate insurance, early and continuous screening for special health care needs, service organization, involvement of families, and transition to independent living. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM003.

Keywords: Children with special health care needs, Decision making, Families, Family centered community based care, Health insurance, Health programs, Healthy People 2010, Medical home, Outcome evaluation, Patient satisfaction, Screening, Service delivery systems, State CSHCN programs, Title V programs, Transition planning, Transition to independent living

Annotation: This compendium is intended to serve as a diagnostic and management resource for the pediatrician and primary care physician in caring for children with specific genetic conditions. General principles in the care of children with genetic disorders are provided followed by the American Academy of Pediatrics (AAP) Committee on Genetics Policy Statements for a variety of diagnoses. The appendices discuss fetal alcohol syndrome and fetal alcohol effects, general principles of the care of children and adolescents with genetic disorders and other chronic health conditions, hospital stays for healthy term newborns, the medical home, recommendations for preventive pediatric health care, and transition of care provided for adolescents with special health care needs. A list of national and regional genetic organizations is provided as well as information on the AAP Section on Genetics and Birth Defects and an AAP section membership application form.

Contact: American Academy of Pediatrics, Washington, DC Office, Department of Federal Affairs, 601 13th Street, N.W., Suite 400 North, Washington, DC 20005, Telephone: (202) 347-8600 Fax: (202) 393-6137 Web Site: http://www.aap.org $29.95, nonmembers; $24.95, members; plus $6.95 shipping and handling. Document Number: ISBN 0-910761-80-9.

Keywords: Adolescents with special health care needs, American Academy of Pediatrics, Children with developmental disabilities, Children with special health care needs, Fetal alcohol syndrome, Genetic disorders, Pediatricians, Preventive health services, Primary care

Annotation: The American Academy of Pediatrics Committee on Injury and Poison Prevention developed this policy statement on providing safe and proper systems of occupant protection during transportation of children with special needs. It includes background information, the Academy's recommended guidelines for protection, and references.

Contact: American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, IL 60007-1098, Telephone: (847) 434-4000 Secondary Telephone: (800) 433-9016 Fax: (847) 434-8000 Web Site: http://www.aap.org Price unknown.

Keywords: Children with special health care needs, Injury prevention, Transportation

Annotation: This checklist itemizes the services and benefit policy needed to ensure that children with special needs have a medical home—care that is accessible, family-centered, comprehensive, continuous, coordinated, compassionate, and culturally competent. The checklist is intended to serve as a reference tool for both pediatricians and administrators of health care plans when establishing contracts. The areas of service addressed are access to primary care pediatricians, access to specialty and related services, and quality of care. [Funded by the Maternal and Child Health Bureau]

Contact: American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, IL 60007-1098, Telephone: (847) 434-4000 Secondary Telephone: (800) 433-9016 Contact Phone: (847) 981-7621 Fax: (847) 434-8000 Contact E-mail: jbetz@aap.org Web Site: http://www.aap.org

Keywords: Access to health care, Children with special health care needs, Culturally competent services, Family centered services, Guidelines, Medical home, Pediatricians, Primary care, Quality assurance

Annotation: This pamphlet describes the American Academy of Pediatrics' Medical Home for Children program. The medical home for children is defined, and areas of program focus are outlined. [Funded by the Maternal and Child Health Bureau]

Contact: American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, IL 60007-1098, Telephone: (847) 434-4000 Secondary Telephone: (800) 433-9016 Contact Phone: (708) 228-5005 Fax: (847) 434-8000 Contact E-mail: kidsdocs@aap.org Web Site: http://www.aap.org

Keywords: Children with special health care needs, Community health services, Medical home

Annotation: This handbook serves as a tool for pediatricians, health care professionals, families, and community members in incorporating the medical home concept into the design of coordinated community systems of health care. It discusses the medical home concept and the role of the Early Intervention Program for Infants and Toddlers With Disabilities in providing the statewide system for early intervention services. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHI023.

Keywords: Children with special health care needs, Community based services, Early intervention, Service coordination

Annotation: This manual describes nursing's scope of practice with regard to early intervention and includes standards for nurses providing early intervention services. It provides an overview of Part H of the Individuals with Disabilities Education Act (IDEA) and reviews the relationship between nursing and Part H of IDEA. It covers the purpose and description of standards of nursing practice, guidelines for using the standards, standards of care, standards of professional performance, and specialty practice guidelines. A glossary, references and appendices are also included. The cover shows a drawing of the globe with the legend "The Wonderful World Where Everyone Is Different" inscribed around the perimiter. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHH058.

Keywords: Early intervention, Federal legislation, Individuals with Disabilities Education Act, Part H, Nursing, Standards

Annotation: This document broadens the scope of an earlier document on standards of nursing practice for early intervention. It covers care of individuals and population-based care. Topics in standards of care include assessment, nursing diagnosis, outcome identification, planning, implementation, and evaluation. Topics in professional performance include quality of care, performance appraisal, education, collegiality, ethics, collaboration, research, and research utilization. Standards for agencies, a glossary, and a bibliography are included. The cover shows a drawing of the globe with the legend "The Wonderful World Where Everyone Is Different" inscribed around the perimeter. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.info Photocopy available at no charge. Document Number: HRSA Info. Ctr. MCHI080.

Keywords: Adolescents with special health care needs, Children with special health care needs, Developmental disabilities, Nursing, Standards

Annotation: This booklet is designed to help parents of children with disabilities find services to assist them and help their child learn and grow. Though developed specifically for Minnesota parents, the book contains information helpful to parents in other states. A list of all the federally funded parent training and information centers is included in the appendix. The topics discussed are early intervention and the law, taking the first steps, child development, service plans, parent and patient rights, Minnesota special education rules, and resolving differences. A list of acronyms and terms parents need to know and a resource list are included.

Contact: PACER Center, 8161 Normandale Boulevard, Bloomington, MN 55437-1044, Telephone: (952) 838-9000 Secondary Telephone: (952) 838-0190 Contact Phone: (612) 827-2966 Fax: (952) 838-0199 E-mail: pacer@pacer.org Web Site: http://www.pacer.org $5.00 includes shipping and handling.

Keywords: Acronyms, Child development, Children with developmental disabilities, Children with special health care needs, Early intervention, Legislation, Minnesota, Parent education, Parent support service, Parents, Patient rights, Planning, Service delivery, Special education, State legislation

Annotation: This manual helps parents and child care providers working with children with special health needs gain insight into their nutrition needs and feeding concerns. The guide builds upon a team approach, explores the relationships between nutrition and growth, reviews stages in child development and oral motor skills, and considers issues relating to self-feeding skills and the mealtime experience. The manual reviews special needs and special diets; provides definitions of children with special needs; and includes selected references and a list of national resource organizations. A Spanish language version is available. [Funded by the Maternal and Child Health Bureau]

Contact: Arizona Department of Health Services, Bureau of USDA Nutrition Programs, 150 N. 18th Ave., Suite 310, Phoenix, AZ 85007, Telephone: (800) 252-5942 Contact Phone: (602) 542-1886 Contact E-mail: lrider@hs.state.az.us Web Site: http://www.azdhs.gov/phs/bnp/index.htm Available at no charge.

Keywords: Child care workers, Child nutrition, Children with special health care needs, Educational materials, Manuals, Parents, Spanish language materials

Annotation: This book provides a comprehensive accounting of public expenditures on children and families. It compares expenditures across all the major programs. It develops guiding principles about how to allocate resources in order to simplify programs, integrate efforts and find more cost-effective ways to respond to families' and children's needs.

Contact: University Press of America, 4501 Forbes Boulevard, Suite 200, Lanham, MD 20706, Telephone: (410) 459-3366 Secondary Telephone: (800) 462-6420 Web Site: http://www.univpress.com $22.95, paper; $52.50, cloth; plus $3.00 shipping and handling for first book, $0.75 for each additional book; make checks payable to University Press of America. Document Number: ISBN 0-87766-651-2, paper; 0-87766-650-4, cloth.

Keywords: CSHCN programs, Children with developmental disabilities, Children with special health care needs, Eligibility determination, Entitlements, Head Start, Program coordination, Program evaluation, Special education, Statistics, Supplemental Security Income

Annotation: This brochure defines family-centered care and lists the main elements of such care. Included is a checklist, utilizing the main elements, for states to assure standards in providing this type of care for children with special health needs. The brochure concludes with names and addresses and descriptions of four projects that are available to assist families in family-centered services. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHB276.

Keywords: Children with special health care needs, Family centered services

Annotation: This paper is the consensus statement reached by the expert workgroup consisting of state Title V directors, family advocates, leading researchers and MCHB leadership on operationalizing a definition of children with special health care needs. The paper also provides a list of the workgroup participants and the organizations to which they belong.

Contact: Association of Maternal and Child Health Programs, 2030 M Street, N.W., Suite 350, Washington, DC 20036, Telephone: (202) 775-0436 Fax: (202) 775-0061 Web Site: http://www.amchp.org Available at no charge.

Keywords: Budgets, Children with special health care needs, Federal legislation, Health insurance programs, Health planning, State health insurance programs

Annotation: This report presents the findings of a policy study about the living arrangements of severely disabled children. The study addressed four questions: 1) Where do America's severely disabled children live, and how are key decisions made about their institutional or home placements? 2) What innovative community programs and comprehensive service arrangements for these children are being developed? 3) What roles are emerging for family support in meeting the needs of severely disabled children and what supports do families need? 4) What state, federal or local policy changes would help? Components of the study included a comprehensive literature review; telephone and in-person interviews; briefings with the National Council on Disability and its staff; and a 1988 forum in Washington, DC, attended by parents, service professionals, legislators, consumer advocates, and researchers. The report includes references and the appendix includes an agenda and list of participants for the 1988 forum.

Contact: National Council on Disability, 1331 F Street, N.W., Suite 850, Washington, DC 20004-1107, Telephone: (202) 272-2004 Secondary Telephone: (202) 272-2074 Fax: (202) 272-2022 E-mail: ncd@ncd.gov Web Site: http://www.ncd.gov/ Price unknown.

Keywords: Model programs, Children with special health care needs, Community programs, Comprehensive health care, Conferences, Disabilities, Drug affected infants, Family support, Federal aid, Health care financing, Health care systems, Home care services, Mental disorders, Pediatric AIDS, Policy analysis, Program coordination, Public assistance, Public policy, Research, Technology dependence

Annotation: This manual provides guidelines for nutrition screening for children from birth to three years. It includes dietary guidelines for young children and a feeding skills section that reviews the developmental sequence in the acquisition of skills needed to consume foods of various textures. A nutrition screening section provides several screening tools including guides for measuring height and weight and growth charts for evaluating measurements. The guide contains checklists and/or facts sheets on various nutrition problems that are frequently experienced by young children, particularly those with special needs. Several of these sections contain handouts for parents that are written in English, Spanish, and/or Chinese. Sections on cerebral palsy, drug-exposed infants and Down syndrome and their effects on nutritional status and feeding are also included. It was adapted from the C.H.E.W.S. Nutrition Project, New Mexico Health and Environment Department.

Contact: Childrens Hospital Los Angeles, UAP Center for Child Development and Developmental Disorders, P.O. Box 54700, Los Angeles, CA 90054, Telephone: (323) 669-2300 $35.00 plus $5.00 shipping.

Keywords: Anemia, Asian language materials, Cerebral palsy, Children with special health care needs, Constipation, Developmental disabilities, Diarrhea, Down syndrome, Drug affected infants, Drugs, Early intervention, Enteral nutrition, Feeding, Food allergies, Infants with special health care needs, Nutrition, Nutrition assessment, Nutrition counseling, Obesity, Oral health, Spanish language materials, Underweight

Annotation: This publication begins with a description of the background of care coordination, including its history, the role of state Title V programs, principles, and core goals. It makes recommendations in the areas of access to care coordination, financing, the role and training of care coordinators, and research and evaluation issues. It also provides definitions of care coordination from several other systems. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM081.

Keywords: Case management, Children with special health care needs, Health care delivery, Service coordination

Annotation: This brief provides a summary of the key goals and principles of care coordination for children with special health care needs (CSHCN) and their families, as well as a list of critical components that should be included in any comprehensive care-coordinating program. It is designed as a companion document to an earlier publication of the Association of Maternal and Child Health Programs: Care Coordination for Children with Special Health Care Needs and Their Families in the New Millennium (August 2000), which presents goals and principles of care coordination. Chapter topics include the need, different types, goals and principles, and critical elements for care coordination for CSHCN. The brief also provides examples of state Title V programs that have operationalized these key elements in Florida and Oregon. Endnotes are provided. [Funded by the Maternal and Child Health Bureau]

Contact: Association of Maternal and Child Health Programs, 2030 M Street, N.W., Suite 350, Washington, DC 20036, Telephone: (202) 775-0436 Fax: (202) 775-0061 Web Site: http://www.amchp.org Contact for cost information.

Keywords: Case studies, Children with special health care needs, Florida, Oregon, Service coordination, State programs, Title V programs

Annotation: This document is designed to assist schools, regional educational service centers, or other settings where educational services are being provided to students with special health needs in Connecticut. It is designed to identify appropriate services and service providers for students with special health needs in the school setting and to plan the support services necessary to ensure the safety and well-being of all students participating in school activities. The guidelines are intended to provide a framework for the development of appropriate policies and procedures to meet the diverse health care needs of students in school settings today. These guidelines were produced through the collaborative efforts and combined expertise of families, educators, and school and community health professionals. They include a list of resources in Connecticut concerned with health, education, children with special health needs, and technology dependent children that school personnel and families can access for information, technical assistance, and/or support.

Keywords: Children with special health care needs, Connecticut, Education, Health services

Annotation: This guide was developed as a companion to a training program for caregivers and parents that focuses on the needs of children with disabilities or other complex medical concerns. Topics include: discussion of the meanings of disability and illness; core ideas about disabilities; disability as a risk factor; typical medical and physical conditions; nutrition and feeding issues; growth and development; communications; educational and legal issues; partnership between parents and various professional personnel; and the role of the nurse in the home. The guide includes questions for welfare professionals to ask and things to look for, to alert them to possible problems. A glossary of words, phrases, and abbreviations is also included.

Contact: Coordinating Center for Home and Community Care, 8258 Veterans Highway, Suite 13, Millersville, MD 21108, Telephone: (410) 987-1048 Secondary Telephone: (301) 621-7830 Fax: (410) 987-1685 E-mail: oholbrook@coordinatingcenter.org Web Site: http://www.coordinatingcenter.org

Keywords: Caregivers, Children with special health care needs, Disabilities, Home care, Medical equipment, Nutrition, Physical disabilities, Training materials

Annotation: This manual provides state and local education agencies guidance in developing policies to ensure the application of the regulations in the Individuals with Disabilities Education Act (IDEA), Part B to Head Start programs. It includes various sections that can be used for training sessions; these include a section on questions and answers, a fact sheet, and masters for transparencies. It also includes a side-by-side comparison of the Head Start regulations, the IDEA regulations, and the Head Start guidance materials; it contains the text of the Head Start regulations and provides a resource directory.

Contact: Council for Exceptional Children, 1110 North Glebe Road, Suite 300, Arlington, VA 22201, Telephone: (703) 620-3660 Secondary Telephone: (866) 915-5000 Fax: (703) 264-9494 E-mail: service@cec.sped.org Web Site: http://www.cec.sped.org $17.25, nonmembers; $12.00, CEC members plus $2.50 shipping and handling. Document Number: ISBN 0-86586-252-4; Stock no. D5053.

Keywords: Children with special health care needs, Collaboration, Disabilities, Education, Federal legislation, Head Start, Policy development, Schools

Annotation: This manual addresses the nutritional screening and guidelines for care in the home of at-risk infants and toddlers through 2 years of age in the context of family centered care. The first section provides background information on early intervention programs and staff development. Section two provides guidelines for nutritional assessment: dietary intake, feeding, growth, and clinical evaluation. The final section deals with specific nutritional issues be diagnosis, including prematurely born infants, obesity, spinal bifida, congenital heart disease, and cystic fibrosis. Each issue has a brief introduction, a list of important nutritional considerations, examples or case studies used to illustrate important points, and a list of current references that provide more detailed or comprehensive information on the topic. Special features in the manual include full-sized forms and charts for do-it-yourself adaption, and bulleted checklists, tables, and diagrams designed to simplify and speed understanding when used in busy clinics or schools.

Contact: Precept Press, Bonus Books, Inc., 1223 Wilshire Blvd., #597, Santa Monica, CA 90403, Telephone: (800) 660-1960 Secondary Telephone: (310) 492-9400 Fax: (310) 492-9401 E-mail: bb@bonusbooks.com Web Site: http://www.bonusbooks.com/ $59.95. Document Number: ISBN 0–944496–47–4.

Keywords: Family centered care, High risk infants, Home care, Infant nutrition, Infants with developmental disabilities, Infants with special health care needs, Nutrition assessment, Nutrition services, Toddlers

Annotation: This document reflects the requirements and options to states under the Amendments to the Individuals with Disabilities Education Act (IDEA) of 1997 (P.L. 105-17). The relevant portion of the IDEA statute is included in the paper as are relevant sections from the current and the proposed federal regulations. Finally, analyses are presented of data gathered by the author from the states and jurisdictions regarding their eligibility criteria and classifications.

Contact: National Early Childhood Technical Assistance Center, Campus Box 8040, UNC-CH, Chapel Hill, NC 27599-8040, Telephone: (919) 962-2001 Secondary Telephone: (919) 843-3269 Fax: (919) 966-7463 E-mail: nectac@unc.edu Web Site: http://www.nectac.org $3.00 including shipping and handling.

Keywords: Children with developmental disabilities, Children with special health care needs, Education, Eligibility, Federal legislation, Individuals with Disabilities Education Act, Part B

Annotation: This document establishes guidelines to assist states and local communities in developing quality respite services that meet the diverse needs of families. They include guidelines on the following: 1) family involvement, 2) care needs of the child, 3) care providers, 4) community involvement, 5) service delivery, 6) administration, and 7) evaluation.

Contact: ARCH National Respite Network, Chapel Hill Training Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514, Telephone: (919) 490-5577 Fax: (916) 490-4905 E-mail: lbaker@chtop.org Web Site: http://www.archrespite.org Price unknown.

Keywords: Access to health care, Caregivers, Children with developmental disabilities, Children with special health care needs, Chronic illnesses and disabilities, Guidelines, Health services, High risk children, Respite care, State CSHCN programs

Annotation: This second edition highlights the void between nutrition research and its practical application to children with chronic diseases and developmental disorders, including inborn errors of metabolism. Topics include treatment, techniques of assessment, prevention, and specific diseases and conditions. Chapter on diseases are organized to cover biochemical and/or clinical abnormalities, techniques in nutrition evaluation or diagnosis, nutritional treatment or management, and follow-up procedures, Part one stresses preventive techniques in assessing and averting disease and other high-risk problems. Resource materials and quality assurance standards in nutrition also are addressed. Part two deals with nutrition in chronic diseases and developmental disorders. Part three describes inborn errors of metabolism and provides methods of diagnosis and nutritional therapy. New topics such as botanicals, probiotics, sports nutrition, genetics, and vegetarianism are included in this edition. Ten appendices provides intake guides, growth grids, nutritional assessment records, a protocol, quality assurance guides, skinfold grids, maturation charts, and adult nutrition guides. An index is included.

Contact: Oxford University Press, 198 Madison Avenue, New York, NY 10016, Telephone: (800) 451-7556 Secondary Telephone: (212)726-6000 E-mail: custserv@oup.com Web Site: http://www.oup.com/us Document Number: ISBN 0-19-516564-0.

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Developmental disabilities, Eating disorders, Feeding disorders, Genetic disorders, Infants with special health care needs, Metabolic diseases, Nervous system disorders, Nutrition, Substance abuse, Toxicity

Annotation: This fact sheet provides information about developing emergency care plans for children with special health care needs, specifically why an emergency care plan is important and what type of information to include in an emergency care plan. [Funded by the Maternal and Child Health Bureau]

Contact: Emergency Medical Services for Children (EMSC) National Resource Center, 111 Michigan Avenue, N.W., Washington, DC 20010, Telephone: (202) 884-4927 Fax: (202)884-6845 E-mail: info@emscnrc.com Web Site: http://www.childrensnational.org/EMSC/ Available at no charge; also available at no charge from the Web site.

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Keywords: Children with special health care needs, Emergency medical services for children

Annotation: This document provides worksheets and assessment scales for rating programs against model standards in the areas of individualized services, health care professional and team characteristics, health care agency or facility responsibilities, state health department responsibilities, and guidelines for community and societal supports. Volume 1 of this set offers a set of standards that identify key elements contributing to quality health care for children with special health care needs. Volume 2 provides a set of health system assessment tools that have been developed in order to support the use of 'Enhancing Quality' for system-building and assessment purposes in a variety of settings. [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 E-mail: info@neserve.org Web Site: http://www.neserve.org Document Number: HRSA Info. Ctr. MCHC089.

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Keywords: Assessment, Children with special health care needs, Quality assurance, Standards

Annotation: This report explains the action plan developed at the Consensus Conference, Children with Special Health Care Needs and their Families: Building on Cultural Strengths, held at the Wingspread Conference Center in Wisconsin in June, 1998. The report begins by explaining the series of Wingspread Conferences on cultural factors and children with special health care needs. It goes on to explain the top ten recommendations for action identified by the Conference and the action plan developed from these recommendations. A list of participants is included at the end. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM014.

Keywords: Children with special health care needs, Conferences, Cultural barriers, Cultural competence, Cultural factors, Health planning, Model programs, Program planning

Annotation: This publication for health professionals comprises articles on oral health care for individuals with special health care needs. Articles discuss the oral health care needs of children with mental retardation or other developmental disabilities and the lack of importance placed on their oral health care. Additional articles provide information on behavior-management techniques, diagnostic and treatment considerations, and professional challenges and responsibilities.

Contact: Exceptional Parent, Exceptional Parent Library, 416 Main Street, Johnstown, PA 15901, Telephone: (800) 372-7368, x110 E-mail: EPLibrary@eparent.com Web Site: http://www.eparent.com $6.95, includes shipping and handling. Order online at http://www.eplibrary.com/specialreports.

Keywords: Behavior, Children with special health care needs, Dental care, Developmental disabilities, Health care delivery, Mental retardation, Oral health, Special health care services

Annotation: This document provides guidelines on the mediated learning experience (MLE) method of educating children with special health needs, where a parent, educator, or caregiver acts as mediator between a child and stimuli and develops the stimuli for the child due to the child's limited ability to learn by himself. It goes over the basic characteristics of MLE (intentionality, reciprocity, and transcendence), and explains how to help mediate certain feelings and behaviors.

Contact: Hadassah Wizo Canada Research Institute, Six Karmon Street, Beit Hakerem, P.O. Box 3160, Jerusalem, Israel 91031, Telephone: (02) 536202 Secondary Telephone: 02-511934 Fax: 972-2-51499 Price unknown.

Keywords: CSHCN programs, Child development, Children with special health care needs, Educational programs, Guidelines, Learning, Teaching

Annotation: This report provides background information about children with special health care needs (CSHN) and describes states' options for addressing those needs under the State Children's Health Insurance Program (CHIP). To assist state legislators who want to use the flexibility of Title XXI to improve services for CSHN, the report describes the following strategies: providing supplemental benefits; arranging for specialists to be included under the CHIP plan; expanding eligibility criteria to assist additional families; defining "medical necessity" more broadly; modifying cost-sharing requirements; and addressing quality assurance issues. Appendices include details about programs in Connecticut, Florida, and North Carolina; public health care programs for low income children; and lists of state and national contacts. [Funded by the Maternal and Child Health Bureau]

Contact: National Conference of State Legislatures, 7700 East First Place, Denver, CO 80230, Telephone: (303) 364-7700 Secondary Telephone: (303) 364-7812 Fax: (303) 364-7800 E-mail: ncslnet-admin@ncsl.org Web Site: http://www.ncsl.org $30.00. Document Number: ISBN 1-58024-074-7.

Keywords: Children with special health care needs, Connecticut, Florida, Low income groups, Model programs, North Carolina, Public health services, Reports, Social Security Act, Title XXI, State CSHCN programs, State Children's Health Insurance Program, State legislatures

Annotation: This report gives information on a technical assistance project for the North Carolina Department of Environment, Health, and Natural Resources Division of Maternal and Child Health. The project examined practice guidelines to promote health care quality for children with special health needs as their care was expected to migrate to a Medicaid managed care system. The report includes a summary of guidelines for children with the following conditions: asthma, attention deficit hyperactivity disorder, cerebral palsy, congenital deafness, cystic fibrosis, diabetes, sickle cell disease, and spina bifida. The report also identifies the sources of these guidelines. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org Available at no charge from the Web site.

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Keywords: Asthma, Attention deficit disorder, Cerebral palsy, Children with special health care needs, Cystic fibrosis, Deafness, Diabetes mellitus, Guidelines, Hyperactivity, North Carolina, Quality assurance, Sickle cell disease, Spina bifida, Standards, State health care reform, Technical assistance

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.

Contact: Georgia Department of Community Health, Division of Public Health, Two Peachtree Street, N.W., Atlanta, GA 30303-3186, Telephone: (404) 657-2700 Web Site: http://health.state.ga.us Available at no charge from the Web site.

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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

Annotation: This special supplement of Special Care in Dentistry presents protocols from a conference held on February 1, 2002, in San Francisco, California. Topics include risk assessment, chlorhexidine mouth rinses, xylitol chewing gum, topical fluoride and fluoride varnish applications, and methods to control or treat periodontal disease. The supplement also presents information on next steps, including the design of an implementation and dissemination strategy to encourage nurses, case managers, social workers, caregivers, and others to use the protocols. A plan will also be implemented to increase awareness of the interventions through professional publications and educational opportunities.

Contact: Special Care Dentistry, 401 North Michigan Avenue, Suite 2200, Chicago, IL 60611, Telephone: (312) 527-6764 Fax: (312) 673-6663 E-mail: SCD@SCDonline.org Web Site: http://www.SCDonline.org $25 (domestic mailing); $30 (international).

Keywords: Children with special health care needs, Conferences, Dental care, Dental caries, Early childhood caries, Fluoride, Oral health, Periodontal disease, Protocols, Risk assessment

Annotation: This videotape and trainer's guide provide in-service training in nutrition issues concerning children ages newborn to 3 who have special health care needs. The materials are directed toward health and education professionals working in early intervention programs. The videotape discusses six common nutritional concerns in the early intervention population, and the role of the nutritionist as a member of, or consultant to, the early intervention team. The trainer's guide includes a pretest, description of nutrition services stipulated in P.L. 102-119 (Individuals with Disabilities Education Act), outline of the components of nutrition screening, reproducible handouts, and discussion questions. [Funded by the Maternal and Child Health Bureau]

Contact: Tufts-New England Medical Center, Frances Stern Nutrition Center, 800 Washington Street , NEMC #783, Boston, MA 02111, Telephone: (617) 636-5273 Web Site: http://www.tuftsmedicalcenter.org/ourservices/SpecialServicesandCenters/FrancesSternNutritionCenter/default $25.00 for first copy; $20.00 for each additional copy. Document Number: HRSA Info. Ctr. MCHI045.

Keywords: Audiovisual materials, Children with special health care needs, Early childhood educators, Early intervention, Individuals with Disabilities Education Act, Infant nutrition, Nutritionists, Training materials, Videotapes

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.

Contact: Georgetown University Center for Child and Human Development, Georgetown University Box 571485, 3300 Whitehaven Street, N.W., Suite 3300, Washington, DC 20007-3935, Telephone: (202)687-5503 Secondary Telephone: (202)687-5000 Fax: (202) 687-8899 E-mail: gucdc@georgetown.edu Web Site: http://www.gucchd.georgetown.edu/index.html Available at no charge from the Web site.

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

Annotation: This packet is a set of reference tools that identify and describe performance measurement systems and their applicability to children with special health care needs (CSHCN). It includes an overview of the problems with defining the CSHCN population; a chart of specific measurements pertaining to CSHCN listed by domains of quality such as care coordination, access, and family-centered care; an overview of some of the key quality measurement sets with comments on their relevance for CSHCN; and contact information. [Funded by the Maternal and Child Health Bureau]

Contact: Johns Hopkins Bloomberg School of Public Health, Women's and Children's Health Policy Center, 615 North Wolfe Street, Room E4143, Baltimore, MD 21205, Telephone: (410) 502-5450 Fax: (410) 502-5831 E-mail: lzerbe@jhsph.edu Web Site: http://www.jhsph.edu/wchpc Available at no charge.

Keywords: Children with special health care needs, Evaluation methods, Managed care, Qualitative evaluation, Quality assurance

Annotation: This document begins by defining family centered care and discussing its benefits. It goes on to explain the components of a family centered hospital care program: committed hospital leadership, personnel policies and practices, supportive architecture and design, professional communication with families, family-to-family support and networking, linking families with community resources, educating family-centered professionals, research design, and family involvement in hospital decisions. The concluding chapters offer practical tips for hospital personnel starting a family centered care program and strategies for family involvement in the process. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Family-Centered Care, 7900 Wisconsin Avenue, Suite 405, Bethesda, MD 20814, Telephone: (301) 652-0281, ext. 16 Contact Phone: (301) 320-2686 Fax: (301) 652-0186 E-mail: institute@iffcc.org Web Site: http://www.familycenteredcare.org Price unknown. Document Number: ISBN 0-9642014-0-2.

Keywords: Child health services, Collaboration, Community programs, Ethics, Facility design and construction, Family centered care, Family support services, Health personnel, Hospital services, Parent participation, Parents, Policy development, Professional education, Program development, Research design

Annotation: This training manual complements the skills of parent liaisons, parents of children with special health needs who work within a medical and social work team to assist other families to become more effective caregivers for their own children with special health needs. This guide aims to increase the parent liaison’s understanding of families and how they cope with special issues; enhance their communication and problem-solving strategies; and clarify their roles and responsibilities. Resources include a bibliography; a glossary of medical, disability and education terms; fact sheets about medical conditions; reprints of some of the additional readings; and resource directories. Each topic area includes case studies, instructional activities, and suggested readings. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan.

Keywords: Advocacy, Children with special health care needs, Coping, Families, Parenting, Parents, Peer support programs

Annotation: This is a report of assistance to the Indiana State Department of Health (ISDH) from Health Systems Research, Inc. (HSR). ISDH officials identified two primary objectives in their request for technical assistance: 1) enhancing the capacity of the Title V Children's Special Health Care Services (CSHCS) program to provide comprehensive primary care to special needs children; and 2) defining and clarifying the future role of Indiana's Title V program, which includes the Maternal and Child Health (MCH) and CSHCS programs, in the context of the state's implementation of a Medicaid managed care system. Site visits led to the development of the following two products which are described in the report: 1) a comprehensive proposal for adopting and implementing a Medicaid-financed care coordination system for children with special health care needs; and 2) draft addenda to contracts with managed care providers outlining appropriate protocols and quality standards for delivery of services for children with special health care needs. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org Price unknown.

Keywords: Children with special health care needs, Contract services, Indiana, Managed care, Medicaid, Program proposals, Standards, Title V programs

Annotation: This manual, a product of an interagency project between the Virginia Departments of Health and Education, is a guide for parents and professionals on the management of nutrition problems of school children with special needs. It helps school personnel plan nutrition services for students who have special health needs or are chronically ill. The information included facilitates the management of special diets and the expansion of nutrition education in the school curriculum. It includes information on these topics: common nutrition problems and interventions during the school day; dietary considerations of specific conditions and related factors; and nutrition goals and objectives for the individualized education program. Dietary considerations and sources of information and/or nutrition education materials for the following conditions are discussed: cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, juvenile rheumatoid arthritis, phenylketonuria, seizure disorders, spina bifida, constipation, feeding abnormalities, and tube feeding. Nine case studies are presented. The appendix includes information on lunch menu ideas for special diets, nutritious snacks, textural modifications, arthritis diet and drugs, complications of tube feeding, and PKU diet free foods. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI113.

Keywords: Cerebral palsy, Children with special health care needs, Constipation, Cystic fibrosis, Diabetes mellitus, Down syndrome, Enteral nutrition, Epilepsy, Feeding disorders, Individualized education programs, Juvenile rheumatoid arthritis, Nutrition, Phenylketonuria, School food services, Spina bifida

Annotation: This publication is designed for parents of children with special health needs to help familiarize them with the Individualized Family Service Plan (IFSP). It is based on a program of family support and information called 'Building family strengths' that was developed by a group of mothers of children with disabilities and refined based on participation of parents in Ohio. This manual is designed to help prepare parents for full participation in the formulation of their child's IFSP. It discusses how to solve difficult problems using a specific decision-making model, how to improve communication skills, and how to identify coping strategies.

Contact: Family Child Learning Center, 143 Northwest Avenue, Building A, Tallmadge, OH 44278, Telephone: (216) 633-2055 Fax: (216) 633-2658 E-mail: webmaster@familychild.org Web Site: http://www.familychild.org/ Price unknown.

Keywords: Children with special health care needs, Early intervention services, Families, Individualized family service plans, Ohio

Annotation: This booklet provides information on procedural safeguards of the early intervention system that are designed to protect the interests of both the families of young children with special needs and the service providers under the Individuals with Disabilities Education Act (IDEA), part H. Ways to explain procedures for complaint resolution and strategies for establishing opportunities for family input are presented. The booklet contains principles and examples of family-friendly language from materials submitted by early intervention programs across the country. The IDEA regulations on procedural safeguards are included.

Contact: National Early Childhood Technical Assistance Center, Campus Box 8040, UNC-CH, Chapel Hill, NC 27599-8040, Telephone: (919) 962-2001 Secondary Telephone: (919) 843-3269 Fax: (919) 966-7463 E-mail: nectac@unc.edu Contact E-mail: nectasta.nectas@mhs.unc.edu Web Site: http://www.nectac.org $6.00 includes shipping and handling; quantity discounts available.

Keywords: Children with developmental disabilities, Development, Dispute resolution, Early intervention, Early childhood education, Family centered services, Federal legislation, High risk populations, Infants, Special education, Special health care needs, Toddlers

Annotation: This document was designed to assist Illinois school districts in developing programs to meet the special health and education needs of students who have chronic illnesses or other health impairments, whether or not such students are receiving special education services. It is intended as a model for schools. The publication includes a definition of terms, detailed information on selected chronic health conditions which are commonly found in schools, and interventions which are being used in schools. The definition and purpose for each intervention is described followed by guidelines and precautions. A bibliography is also included.

Keywords: Adolescents with special health care needs, Children with special health care needs, School nurses, School personnel, Standards

Annotation: This videotape highlights the content set forth in the Maternal and Child Health Bureau's publication Measuring Success for Healthy People 2010: Objectives for Children with Special Health Care Needs and Their Families. It describes six performance measures for achieving the goal of comprehensive, family-centered, community-based, culturally competent and coordinated care for children and youth with special health care needs. It is close captioned for the hearing impaired. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM003.

Keywords: Audiovisual materials, Children with special health care needs, Decision making, Families, Family centered community based care, Health insurance, Health programs, Healthy People 2010, Medical home, Outcome evaluation, Patient satisfaction, Screening, Service delivery systems, State CSHCN programs, Title V programs, Transition planning, Transition to independent living, Videotapes

Annotation: This report outlines a strategy for defining medical necessity that will promote high quality care for children, youth, and adults with developmental disabilities, mental retardation, serious emotional disorders, or other special health care needs. The report begins with background information including defining the population involved and its service needs. It explains why medical necessity determinations are important and gives key criteria including a recommended approach to defining medical necessity. Appendices include a list of contributors, medical necessity definitions by states and organizations, and an analysis of selected definitions of medical necessity. The executive summary presents a one page synopsis of specifications for defining medical necessity and includes one paragraph each on the problem, the goal, the report, and the audience. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available for loan. Document Number: HRSA Info. Ctr. MCHL071 (report), MCHL097 (executive summary).

Keywords: Access to health care, Affective disorders, Developmental disabilities, Mental retardation, Qualitative evaluation, Reports, Resource allocation, Special health care services

Annotation: This report develops specifications for conducting a practical needs assessment of children with special needs and their families. Presented within the overall context of resource constraints, the report discusses six specific steps in planning and conducting a needs assessment, and identifies key decision points and recommendations for each step. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.info Available for loan. Document Number: HRSA Info. Ctr. MCHH126.

Keywords: Children with special health care needs, Health care systems, Needs assessment

Annotation: This manual provides quick reference information on nutrition for children with special health care needs. It was prepared for registered and licensed dietitians who are not working in a major medical center; dietitians in managed care settings; dietitians working in public service or WIC programs; private consultants; dietetic students; and other health professionals who hire consultants for nutrition services. Topics include growth, diet and nutrition, feeding and eating, non-oral enteral feeding, fluid and bowel problems, and community services and programs. The manual includes references and a glossary.

Contact: Sparks Clinics, 208 Sparks Center, 1720 Seventh Avenue, South, Birmingham, AL 35294-0017, Telephone: (205) 934-5471 Secondary Telephone: (800) 822-2472 Fax: (205) 975-2380 Web Site: http://circ-uab.infomedia.com/index2.asp $19.50 includes shipping and handling.

Keywords: Dietetics, Child nutrition, Children with special health care needs, Dietary assessment, Enteral nutrition, Gastrointestinal diseases, Growth charts, Growth monitoring, Infant nutrition, Nutrition disorders, Nutrition education, Nutrition monitoring, Reference materials, School breakfast programs, School lunch programs, Supplemental food programs

Annotation: This guide describes oral conditions, including abnormalities in oral development, oral trauma, bruxism, oral infections, and gingival overgrowth, that can occur in children with special health care needs. The guide provides definitions for various conditions and infections, describes treatment methods, and discusses when to refer to an oral health professional. Photographs and a short reading list are included.

Contact: National Oral Health Information Clearinghouse, National Institute of Dental and Craniofacial Research, One NOHIC Way, Bethesda, MD 20892-3500, Telephone: (301) 402-7364 Secondary Telephone: (866) 232-4528 Fax: (301) 480-4098 E-mail: nidcrinfo@mail.nih.gov Web Site: http://www.nidcr.nih.gov Available at no charge (limit 50 copies, order online at https://ice.iqsolutions.com/nohic/pubsorder); also available at no charge from the Web site. Document Number: OP-70.

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Keywords: Children with special health care needs, Dental caries, Infections, Malocclusions, Oral health, Periodontal diseases

Annotation: This guide promotes a framework for oral health professionals to communicate and work with families to ensure that appropriate, quality oral health care is provided both at home and in the dental office. The manual contains six sections on the following topics: (1) preparation for dental visits, (2) oral assessment and prevention, (3) determination of specialized treatment techniques, (4) indicators of quality oral health care, (5) linking with community resources in California, and (6) bibliography and other resources. [Funded by the Maternal and Child Health Bureau]

Contact: Childrens Hospital Los Angeles, University of Southern California University Affiliated Program, P.O. Box 54700, MS #53, Los Angeles, CA 90054-0700, Telephone: (323) 669-2300 Fax: (323) 671-3835 E-mail: cbujold@chla.usc.edu $25.00; also available at no charge from the Web site.

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Keywords: Case assessment, Children with special health care needs, Community participation, Dental care, Manuals, Oral health

Annotation: This book is designed to provide the pediatric health care professional with the information necessary to provide comprehensive primary care to children with chronic illnesses. Part I addresses the major issues common to the care of all children with chronic conditions: the role of the primary care provider, the impact of a chronic condition on the family and the child's development, and the financial resources, or lack thereof, available and needed to support the care of a child with a chronic condition. Part II identifies 24 chronic conditions found in children that necessitate alterations in standard primary care practices as a result of the chronic condition.

Keywords: AIDS, Asthma, Bronchopulmonary dysplasia, Cancer, Cerebral palsy, Children, Children with special health care needs, Chronic illnesses and disabilities, Congenital adrenal hyperplasia, Cystic fibrosis, Diabetes mellitus, Down syndrome, Drug affected children, Drug affected infants, Epilepsy, Fragile X syndrome, HIV, Heart diseases, Hemophilia, Hydranencephaly, Inflammatory bowel diseases, Juvenile rheumatoid arthritis, Kidney diseases, Learning disabilities, Meningomyelocele, Organ transplantation, Phenylketonuria, Prematurity, Sickle cell disease

Annotation: This curriculum, written for early intervention personnel and other caregivers, offers practical assessment and intervention strategies for infants and toddlers with mild, moderate, severe, or multiple disabilities. The curriculum covers five major domains including cognition, communication, social adaptation, and fine motor and gross motor skills, and allows the user to create a program specifically tailored to the strengths and needs of each child. An assessment log for charting the child's progress is also included.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: custserv@brookespublishing.com Web Site: http://www.pbrookes.com $40.00.

Keywords: Child health, Children with special health care needs, Curricula, Development, Early intervention, High risk children, Infant health, Infants, Rehabilitation, Toddlers

Annotation: This manual was complied to assist health and education professionals in the management of children with special health needs. The guidelines delineate standard professional practice roles and responsibilities in the provision of specialized health care in educational settings. A matrix listing 66 special health care procedures identifies the persons who are qualified to perform each procedure, who should preferably perform the procedures, and the circumstances under which these persons would be deemed qualified, assuming appropriate training. Resources and references for professional standards and practices related to specialized health care procedures in educational settings are also included.

Contact: Council for Exceptional Children, 1110 North Glebe Road, Suite 300, Arlington, VA 22201, Telephone: (703) 620-3660 Secondary Telephone: (866) 915-5000 Contact Phone: (703) 620-3660 Fax: (703) 264-9494 E-mail: service@cec.sped.org Web Site: http://www.cec.sped.org $5.00 plus $2.00 shipping and handling; must be prepaid.

Keywords: Child health, Children with special health care needs, Guidelines, Nursing, School health, Services, Standards

Annotation: This guide provides strategies for child mental health advocates when advocating to states to develop managed health care systems that improve services for children with mental, emotional, and behavioral disorders. It provides information on managed care, strategies for advocacy, and the challenges of mental care. A glossary of terms is provided at the back of the guide.

Contact: Judge David L. Bazelon Center for Mental Health Law, 1101 15th Street, N.W., Suite 1212, Washington, DC 20005, Telephone: (202) 467-5730 Secondary Telephone: (202) 467-4232 Contact Phone: (202) 467-4232 Fax: (202) 223-0409 E-mail: info@bazelon.org Web Site: http://www.bazelon.org $9.95; plus $4.00 shipping and handling; prepayment required; price also includes the the booklet "Family Guide to Managed Care". Document Number: Item no. F-1.

Keywords: Access to health care, Affective disorders, Behavior disorders, Child advocacy, Child health services, Child mental health, Children with special health care needs, Managed care, Service delivery

Annotation: This brochure explains to families how a well designed managed care program can improve access to health services for a child with mental, emotional, or behavioral problems, how they can make their plan work for their child, and what to watch out for.

Contact: Judge David L. Bazelon Center for Mental Health Law, 1101 15th Street, N.W., Suite 1212, Washington, DC 20005, Telephone: (202) 467-5730 Secondary Telephone: (202) 467-4232 Contact Phone: (202) 467-4232 Fax: (202) 223-0409 E-mail: info@bazelon.org Web Site: http://www.bazelon.org $4.60; prepayment required; discounts available for bulk orders; also available with "Managing Behavioral Health Care for Children and Youth: A Family Advocate's Guide" for $9.95 as a set. Document Number: Item no. F-2.

Keywords: Access to health care, Affective disorders, Behavior disorders, Child health services, Child mental health, Children with special health care needs, Managed care, Service delivery

Annotation: This guide is intended to help the parents faced with the challenge of caring for their technology-assisted children at home. The topics addressed are preparing for the child's return home, setting up the home, marital adjustment to home care, helping siblings adjust, working with nurses in the home, and meeting the challenges of parenting.

Contact: New England Medical Center, Research and Training Center in Rehabilitation and Childhood Trauma, 750 Washington Street, No. 75K-R, Boston, MA 02111, Telephone: (617) 636-5031 Fax: (617) 636-5513 $5.00 includes shipping and handling.

Keywords: Children with special health care needs, Guidelines, Home care, Home care services, Marriage, Parenting, Parents, Siblings, Technology dependence

Annotation: This booklet presents standards developed by a committee of home medical equipment suppliers. They cover communication/education, maintenance/delivery, and services. A list of suppliers who participated in the development of these standards is included. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Family centered, community based care, Home care, Home infusion therapy, Medical equipment, Standards

Annotation: This guide is designed for instructors to educate paraprofessionals who work with children with chronic health conditions and disabilities. It describes a range of disabilities and conditions likely to be encountered in child care and preschool settings, as well as the best practices to meet the children's special needs. The guide is divided into the following areas: 1) human development, 2) chronic conditions, 3) care needs, 4) communication and community support, and 5) invasive procedures. Each area has a list of brief curricula that includes a lesson plan and a bibliography. Appendices explain how to organize and prepare the curricula.

Contact: Pro-Ed, 8700 Shoal Creek Boulevard, Austin, TX 78757-6897, Telephone: (512) 451-3246 Secondary Telephone: (800) 897-3202 Fax: 512-451-8542 E-mail: q@proedinc.com Web Site: http://www.proedinc.com $59.00 plus 10 percent shipping and handling; prepayment required. Document Number: Item No. 8377.

Keywords: Child care, Child care services, Children with developmental disabilities, Children with special health care needs, Chronic illnesses and disabilities, Curricula, Infant care, Infants with developmental disabilities, Infants with special health care needs, Toddlers, Training materials

Annotation: This handbook, written for child caregivers, describes child development, the chronic conditions that may affect children, how to care for the children with these conditions, and some aspects of how the child fits into the community. It was developed by the First Start Program, a training program for paraprofessionals and education aides working with infants, toddlers, and preschoolers with disabilities or chronic conditions, that was developed at the University of Colorado Health Sciences Center in 1985. The aim is to keep the caregivers' focus on the child, not the disability, but to give caregivers a basic understanding of what the disability entails so that they can help to manage it.

Contact: Pro-Ed, 8700 Shoal Creek Boulevard, Austin, TX 78757-6897, Telephone: (512) 451-3246 Secondary Telephone: (800) 897-3202 Fax: 512-451-8542 E-mail: q@proedinc.com Web Site: http://www.proedinc.com $39.00 plus 10 percent shipping and handling; prepayment required. Document Number: ISBN 0-89079-708-0; Item No. 8376.

Keywords: Caregivers, Child care, Children with developmental disabilities, Children with special health care needs, Infant care, Infants with developmental disabilities, Infants with special health care needs

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.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: custserv@brookespublishing.com Web Site: http://www.pbrookes.com $44.95, plus shipping and handling. Document Number: ISBN 1-55766-744-6.

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

Annotation: This manual provides information to enhance health care for children with attention deficit hyperactivity disorder (ADHD) who are age 6 to 14 years. The target audience of the manual includes graduate-prepared advanced practice nurses, primary care providers, psychologists, psychiatrists, social workers, and educators. The manual contains two clinical components: the decision tree and the clinical path. The decision tree provides a flow diagram for clinicians to use when assessing and intervening a child with ADHD symptoms. The clinical path functions as a guide to organize care in two stages--assessment and diagnostic decision making; and management and follow-up. Appendices providing information on assessment, diagnosis, and intervention approaches for ADHD are divided into four categories: child- physical; child-psychological; family; and school/educational. Reference lists after each appendix are provided. [Funded by the Maternal and Child Health Bureau]

Contact: University of Washington School of Nursing, NCAST-AVENUW, Health Sciences Building, Room T310, 1959 NE Pacific Street, Seattle, WA 98195, Telephone: (206) 543-8736 Secondary Telephone: (800) 759-NURS Fax: (206) 685-1613 E-mail: sonas@u.washington.edu Web Site: http://www.son.washington.edu $10.00, includes shipping and handling; also available at no charge from the Web site.

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Keywords: Attention deficit disorder, Child development disorders, Educational materials, Guidelines, Hyperactivity, Manuals, Medical education, Nursing education, Pediatric care, Pediatric nursing

Annotation: This document contains the text of Part H and Head Start regulations. Specifically, it addresses early intervention programs for infants and toddlers with disabilities (34 C.F.R. Part 303); program performance standards for operation of Head Start programs by grantees and delegate agencies (45 C.F.R. Part 1304); eligibility, recruitment, selection, enrollment and attendance in Head Start (45 C.F.R. Part 1305); Head Start staffing requirements and program options (45 C.F.R. Part 1306); and Head Start program performance standards on services for children with disabilities (45 C.F.R. Part 1308).

Contact: LRP Publications, PO Box 24668, West Palm Beach, FL 33416, Telephone: (800) 341-7874 Fax: (561) 622-2423 E-mail: custserv@irp.com Web Site: http://www.lrp.com/ Price unknown.

Keywords: Children with special health care needs, Early intervention, Education, Federal legislation, Head Start, Individuals with Disabilities Education Act, Regulations

Annotation: These guidelines identify the school nurse's role and responsibilities, including delegation of nursing functions, as they apply to two groups of children: those with special care needs and those who are technology dependent. This document provides the parameters which the school nurse is expected to utilize in his/her nursing practice in Maryland schools. A glossary of terms is also included.

Contact: Maryland Board of Nursing, 4140 Patterson Avenue, Baltimore, MD 21215-2254, Telephone: (410) 585-1900 Secondary Telephone: (888) 202-9861 Web Site: http://www.mbon.org/main.php Price unknown.

Keywords: Children with special health care needs, Maryland, School nurses, Standards

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.

Contact: New England SERVE, 101 Tremont Street, Suite 812, Boston, MA 02108, Telephone: (617) 574-9493 Fax: (617) 574-9608 E-mail: info@neserve.org Web Site: http://www.neserve.org Available at no charge from the Web site.

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

Annotation: This publication provides a guide for parents, continuing care professionals, hospital and home health care teams, and other community supports to assist in providing a safe, smooth transition of the child with complex medical needs from the hospital to his or her home. It contains a set of standards and indicators that identify and describe the important phases in a child's transition from hospital to home. The essential phases discussed in this manual are first an assessment of the need for home health care; second, development of the plan to be carried out in the home; and third, implementation and evaluation of that plan.

Contact: Massachusetts Department of Public Health, Greater Boston Regional Office, 10 Malcolm X Boulevard, Suite G1, Roxbury, MA 02119, Telephone: (617) 541-2860 Web Site: http://www.mass.gov/dph/about/directions/brho_directions.htm Price unknown.

Keywords: Children with special health care needs, Home care, Medically fragile children, Standards, Technology dependence, Transitions

Annotation: This report describes the results of eighteen months of work of the Sexual Abuse and Young People with Disabilities (SAYPD) Project. The tasks were to conduct a needs assessment survey and develop a resource library on disabilities, sexual abuse and sexuality; compile a registry of professionals with specialized expertise; and form guidelines for sexual abuse investigation involving children and youths with disabilities. Chapters include: licensing officer survey; service provider survey; parent survey; survey of adults with disabilities; resource library; registry of professionals; investigation guidelines; and conclusions.

Keywords: Adolescents with special health care needs, Canada, Crisis intervention, Disabilities, Resources for professionals, Sexual abuse, Sexual assault

Annotation: This manual provides a history of its publication and explains its relationship to the first edition which presented a consensus on the best practices for providing family centered comprehensive early intervention services as required in Part H of the Education of the Handicapped Act Amendments of 1986. This edition contains the final regulations developed by the U.S. Department of Education regarding the implementation of Part H of P.L. 99-457. It explains the rationale for developing an individualized family service plan (IFSP), the process for developing one, and describes how to build strong relationships between families and professionals. Other topics covered are assessing the child's needs and strengths; working with families to identify concerns, priorities, and resources; and implementing the IFSP. A final chapter assesses future directions for the IFSP; this chapter considers issues of interest to state planners and policy makers. [Funded in part by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Developmental disabilities, Education of the Handicapped Act Amendments of 1986, Federal legislation, Guidelines, Individualized family service plans

Annotation: This evaluation tool is designed to assist purchasers in selecting and evaluating the capacity of health plans to serve children, with or without chronic conditions. The first section, on pediatric services covered and cost-sharing requirements, can be used to guide decisions about affordability. The second section, on pediatric provider network capacity, lists questions to inform buyers about how to assess the comprehensiveness and organization of each plan's pediatric service delivery system. The third section, on quality assurance, which also includes a series of questions, can be used to better understand how pediatric services are authorized and evaluated within each plan. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Fax: (352) 265-7221 Contact E-mail: jgr@ichp.edu Web Site: http://www.ichp.edu

Keywords: Children with developmental disabilities, Children with special health care needs, Evaluation, Health insurance, Health maintenance organizations, Managed care

Annotation: This brochure identifies and explains critical indicators for accomplishing the long term goals of the National Agenda for Children with Special Health Care Needs. The critical indicators are: screening; medical home; insurance coverage; organization of services; and families' roles. Also included in the brochure are a list of core outcomes to be achieved and a call for action. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Photocopy available at no charge. Document Number: HRSA Info. Ctr. MCHL033.

Keywords: Access to health care, CSHCN programs, Children with special health care needs, Community based services, Family centered services, Healthy People 2000, Medical home, National programs, Screening, Service coordination, Special health care services, State MCH programs, Title V programs

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]

Contact: Minnesota Department of Health, Community and Family Health Division, PO Box 64975, St. Paul, MN 55164, Telephone: (651) 201-5000 Secondary Telephone: (888) 345-0823 Web Site: http://www.health.state.mn.us/divs/cfh/ Available at no charge from the Web site.

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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

Annotation: This report describes the technical assistance provided to Connecticut in developing a monitoring and oversight system for providing care to children with special health care needs. The report includes background information and information about data collection tools and quality monitoring indicators. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org Price unknown.

Keywords: Children with special health care needs, Connecticut, Data collection, Monitoring, Quality assurance, State CSHCN programs, Technical assistance

Annotation: This report explains the need for quality assurance measures to evaluate the treatment of children with special health care needs (CSHCN). It outlines steps to develop performance measures, what data and data systems are needed, analytic methods, intervention strategies linked to performance measures, and incorporating quality assurance into managed care contracts. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHM007.

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Keywords: Children with special health care needs, Data analysis, Employee performance appraisal, Intervention, Managed care, Quality assurance

Annotation: This manual presents methods for quality assurance measurements of health care service delivery for use with managed care plans to evaluate whether they are adequately serving children with special health care needs. The quality assurance measures include: membership (number of children with special health needs enrolled in the plan, ages, etc.); utilization (number of visits to doctor's office, emergency, mental health or drug-related, etc.); quality (preventive treatments, parents' satisfaction); access; health plan management, such as knowledge of these children's needs; clinical management, including relations with parents, case management; and finance, both total expenditures and cost per child. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHJ085.

Keywords: Access to health care, Children with special health care needs, Evaluation, Managed care, Medicaid, Medicaid managed care, Outcome evaluation, Pediatrics, Quality assurance, Service coordination, Standards, Treatment outcome

Annotation: This manual is a guide to providing nutrition services for children with special health care needs in New Hampshire. The manual covers screening procedures for the children to determine those already malnourished or at risk for experiencing nutrition problems, and presents criteria for this evaluation. Included are nutrition assessment standards, forms, and recommendations. The manual lists standards related to equipment, techniques, and growth, and includes dietary and biochemical data. Nutrition strategies for children with various diseases and disorders are also discussed. Other chapters address job descriptions for nutrition workers, quality assurance, monitoring, references, and educational and training materials for parents and health professionals.

Keywords: Adolescent nutrition, Child nutrition, Children with special health care needs, Infant nutrition, New Hampshire, Nutrition assessment, Nutrition services

Annotation: This report presents information based on a September 1995 meeting at Egg Harbor, Wisconsin. At the meeting, parent leaders discussed the services that managed care systems provide children with special health needs and decided to develop standards of care so the children's needs will be met. The report defines managed care, family-centered care, and children with special health needs; and it outlines principles on these topics: families as the core of the health care system; the significance of family-professional partnerships; the importance of access to equitable care; the need for flexible services; and the provision of comprehensive, coordinated, community-based care. The principles are used to develop standards of care regarding: access, benefits, capacity, decision-making, evaluation and data gathering, and financing. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, 2340 Alamo Drive, S.E., Suite 102, Albuquerque, NM 87106, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 E-mail: kidshealth@familyvoices.org Web Site: http://www.familyvoices.org $1.00 includes shipping and handling.

Keywords: Access to health care, Children with special health care needs, Family centered services, Health care delivery, Health care systems, Managed care, Standards

Annotation: This report describes the initiatives and accomplishments of the National Maternal and Child Health Resource Center on Cultural Competency between October 1, 1992 and September 30, 1995. This grant was awarded to the Texas Department of Health and a consortium of thirteen states and the District of Columbia; the mission was to improve the quality of care and effectiveness of leadership on state agencies for children with special health needs by creating culturally competent systems of care through policies and procedures, staff training, and service delivery. The report describes guiding principles, factors to consider in developing cultural competency, and a cultural competence continuum. It provides sample guidelines and assessment tools, a list of selected trainers and consultants, guidelines on forming work groups and task forces, recommended guidelines for interpretation and translation, and a selected bibliography. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHJ055.

Keywords: Cultural sensitivity, Culturally competent services, Interagency cooperation

Annotation: This booklet lists standards selected from the publication Caring for Our Children: National Health and Safety Performance Standards for Out-of-Home Child Care Programs for the prevention of injury, morbidity, and mortality in child care settings. It is aimed primarily at state licensing and regulatory agencies, and will also be useful to child care, health, and resource and referral agencies and other public and private agencies, advocacy groups, and parents. Selected standards cover: staffing, activities for healthy development, health protection and promotion, nutrition, facilities and transportation, infectious diseases, children with special needs, administration, and recommendations for licensing and community action. [Funded by the Maternal and Child Health Bureau]

Contact: National Resource Center for Health and Safety in Child Care and Early Education, University of Colorado Health Sciences Center at Fitzsimmons, Campus Mail Stop F541, P.O. Box 6511, Aurora, CO 80045, Telephone: (800) 598-5437 Secondary Telephone: (800) 598-KIDS Fax: (303) 724-0960 E-mail: info@nrckids.org Web Site: http://nrckids.org/ Available at no charge from the Web site; print copies available for $4.00 plus shipping and handling from UCHSC Bookstore, 4200 E. 9th Avenue, Mail Stop A057, Denver, CO 80262, Telephone: 1-800-591-2884; E-mail: Traci.Mathis@uchsc.edu. Document Number: ISBN 0-9715682-1-9; HRSA Info. Ctr. MCHJ056,.

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

Annotation: This videotape and workbook are designed to help early intervention professionals appreciate the importance of nutrition and feeding concerns in children with special health care needs. The materials show how to screen for nutrition issues and how to ensure proper nutrition services for children and families enrolled in early intervention programs. The videotape features three families discussing their nutrition concerns and the services they received. The workbook provides guidance for analysis and discussion of the videotape, and includes background information, screening forms, and a bibliography. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI044.

Keywords: Audiovisual materials, Children with special health care needs, Continuing education, Early intervention, Nutrition services, Videotapes

Annotation: This purpose of this training program is to enhance the local health care resources available to families of children with special health needs by making training materials and opportunities available to interested primary care health professionals. The training program consists of this written curriculum and videotapes (with brief manuals) that complement the curriculum. These videotapes include "Listening to Families", "The Office Assessment of Feeding"; "Observation of Play"; and the "Musculoskeletal Exam and Clinical Observation of Gait". The topics of this training program are developmental screening and surveillance, developmental delay and mental retardation, nutrition, cerebral palsy, attention-deficit/hyperactivity disorder, craniofacial anomalies, autism, anxiety disorders, prenatally drug-exposed children, HIV infection in children and adolescents, meningomyelocele and related neural tube defects, traumatic brain injury, spinal cord injury, seizure disorders, and chronic respiratory disorders. A binder containing information and descriptions of numerous related resources in Oregon accompanies this training program. (Funded by the Maternal and Child Health Bureau]

Contact: Oregon Health Sciences University, Child Development and Rehabilitation Center, 3181 S.W. Sam Jackson Park Rd., Portland, OR 97239, Telephone: (800) 452-3563, ext. 7634 Secondary Telephone: (503) 494-8311 Contact Phone: (503) 494-8362 Web Site: http://www.ohsu.edu/outreach/cdrc/ Price unknown.

Keywords: Audiovisual materials, Autism, Cerebral palsy, Children with special health care needs, Community based services, Drug affected infants, Gastroenterologists, Gastrointestinal diseases, Growth monitoring, Managed care, Manuals, Medicaid managed care, Primary care, Resource materials, Spina bifida, Training materials, Videotapes

Annotation: This book suggests standards of accessibility for all environments where children with disabilities are likely to be part of the user population. Several stages of research were carried out to develop these standards: selected codes, standards, and guidelines were reviewed; ergonomic studies, new products, and new technologies were analyzed; recent evaluation literature was examined, and post-occupancy evaluations of environments serving children with disabilities were performed. Each stage is summarized in this book, and the information gathered from each stage was used to prepare the final version of the recommendations. In part, the standards recommended include: space allowances, reach ranges, accessible routes, protruding objects, ramps, stairs, elevators, water closets, toilet stalls, sinks, signage, and telephones.

Keywords: Accessible facilities, Child care, Children with special health care needs, Standards

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.

Contact: Center for Health Care Strategies, 200 American Metro Boulevard, Suite 119, Hamilton, NJ 08619, Telephone: (609) 528-8400 Fax: (609) 586-3497 E-mail: sas@chcs.org Web Site: http://www.chcs.org Available at no charge; also available at no charge from the Web site.

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

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 different cognitive and physical abilities. Common oral health problems are also addressed.

Contact: Special Olympics, Special Smiles, 1133 19th Street, N.W., Washington, DC 20036, Telephone: (202) 628-3630 Fax: (202) 824-0200 E-mail: spolk@specialolympics.org. Web Site: http://info.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Healthy_Athletes/Special_Smiles/default.htm Available at no charge from the Web site.

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

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.

Contact: Washington State Department of Health, Children with Special Health Care Needs Program, P.O. Box 47835, Olympia, WA 98504-7835, Telephone: (360) 236-3571 Fax: (360) 586-7868 E-mail: cshcn.support@doh.wa.gov Web Site: http://www.doh.wa.gov/cfh/mch/cshcnhome2.htm Available at no charge from the Web site.

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

Annotation: This manual provides information about caring for students with special health needs in a school setting. The manual covers the kinds of medical technology used by students, legal issues in the education of students with special health care needs, the entrance and planning process, transportation issues, and special health concerns. The manual gives information about specific special needs, such as tube feeding, intravenous lines, dialysis, clean intermittent catheterization, ostomy care, and respiratory care. Skills checklists, a glossary, and index are included.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: custserv@brookespublishing.com Web Site: http://www.pbrookes.com $52.00 includes shipping and handling. Document Number: ISBN 1-55766-236-3.

Keywords: Adolescents with special health care needs, Children with special health care needs, Medical equipment, Medical technology, School health services, School nurses

Annotation: This manual contains material designed to assist a beginner individual or small group develop a support group or information network. The subjects covered are: self-help in general, primary steps to getting started, developing secondary components, workshop training programs, and bridging the gap to professionals. Appendices cover many aspects of getting started, organizing, and functioning for a group. The manual contains an index. [Funded by the Maternal and Child Health Bureau]

Contact: National Center on Parent Directed Family Resource Centers, 535 Race Street, San Jose, CA 95126, Telephone: (408) 288-5010 Price unknown.

Keywords: Children with special health care needs, Family support services, Information networks, Peer counseling, Support groups

Annotation: This report is intended for trainers of care givers for children with special health needs, and for families, and policy makers. The report explains the range of conditions which children with special health care needs exhibit. The report also assesses the impact of the Americans with Disabilities Act (ADA), the attitudes of care givers, licensing issues, how to ensure quality care, and offers information on how to implement best practices. Appendices list selected national parent organizations, recommended core content of health and safety training for child care providers in California, authorization for release of medical information forms, safety issues for children with special care needs or disabilities, emergency contact information, and child care incident report forms. Additionally, some training materials are included. The report is one of a set of documents developed by Project Exceptional (Exceptional Children: Education in Preschool Techniques for Inclusion, Opportunity-building, Nurturing, and Learning).

Keywords: Child care, Child care, Children with developmental disabilities, Children with special health care needs, Health and safety, Inclusive schools, Medically fragile children, Training materials

Annotation: This paper addresses specific questions, issues and criteria for major sections of the State Children's Health Insurance Plan (SCHIP). These are section 2, description of state approach to child health coverage; section 4, eligibility standards and methodology; section 5, outreach and coordination; section 6, coverage requirements; section 7, quality and appropriateness of care; section 8, cost sharing and payment; and section 9, strategic objectives and performance goals.

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Contact Phone: (352) 392-5904 x224 Fax: (352) 265-7221 Contact E-mail: jgr@ichp.edu Web Site: http://www.ichp.edu Price unknown.

Keywords: Children with special health care needs, Health care delivery, State Children's Health Insurance Program

Annotation: This document presents standards for pediatric medical foster care in Florida for the care of children whose needs cannot currently be met by their own families and who can benefit from the experiences and help that a foster care program can offer to them and their families. The purpose of these standards is to define the components and methods for providing care to children with complex medical problems who reside temporarily or permanently in a foster care setting. These standards of care include a definition of terms, guidelines for personnel, facility requirements, criteria for placement, referral and placement procedures, recommendations for available services, emergency procedures, and guidelines for inservice training, quality assurance, and administration.

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Contact Phone: (904) 392-5904 Fax: (352) 265-7221 Contact E-mail: ICHP@qm.server.ufl.edu Web Site: http://www.ichp.edu Price unknown.

Keywords: Children with special health care needs, Community based services, Florida, Foster care, Pediatric care, Services, Standards

Annotation: This document presents standards for programs in Florida providing respite care to the families of children with complex medical problems (defined as individuals, ages 0 to 21, who have chronic diseases or conditions that generally require continuous 24-hour a day medical, nursing, and health supervision). The authors warn that these standards are not to be applied to programs providing respite care to the families of children with other types of special needs. These standards of care include a definition of terms, guidelines for personnel, facility requirements, criteria for enrollment, referral and enrollment procedures, and guidelines for inservice training, quality assurance, and administration.

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Contact Phone: (904) 392-5904 Fax: (352) 265-7221 Contact E-mail: ICHP@qm.server.ufl.edu Web Site: http://www.ichp.edu Price unknown.

Keywords: Pediatric care, Children with special health care needs, Community based services, Florida, Respite care, Standards

Annotation: This document presents standards for residential skilled pediatric nursing facilities in Florida for the care of children whose needs cannot currently be met by their own families or through medical foster care placement, and who can benefit from the experiences and help that a residential facility can offer to them and their families. The purpose of these standards is to define the components and methods for providing care to children who reside temporarily or permanently in a 24-hour residential setting. These standards of care include a definition of terms, guidelines for personnel, facility requirements, criteria for admission, referral and admission procedures, recommendations for available services, emergency procedures, and guidelines for inservice training, quality assurance, and administration.

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Contact Phone: (904) 392-5904 Fax: (352) 265-7221 Contact E-mail: ICHP@qm.server.ufl.edu Web Site: http://www.ichp.edu Price unknown.

Keywords: Children with special health care needs, Community based services, Florida, Pediatric care, Skilled nursing facilities, Standards

Annotation: This report summarizes the best practice principles of some Native American Early Childhood Intervention programs; describes the collaboration activities between tribes, states, and families; and lists the concerns of Native American parents of children with disabilities. Also included are conclusions and recommendations regarding services for Native American children with disabilities. [Funded by the Maternal and Child Health Bureau]

Contact: Utah State University, Early Intervention Research Institute, 1400 Old Main Hill, Logan, UT 84322-1400, Telephone: (435) 797-1000 Secondary Telephone: (800) 8877-1699 Fax: (435) 797-2019 Web Site: http://www.eiri.usu.edu Single copies available at no charge.

Keywords: American Indians, Children with special health care needs, Collaboration, Early intervention programs

Annotation: This book is designed to help with the financial aspects of having a child with special health needs. The suggestions and guidelines assist families in obtaining needed help for their children at costs they can afford. The author offers practical advice on how to limit out-of-pocket expenses; appeal health insurance claims that are denied; select a health insurance plan that fits the family's needs and budget; set up payment plans with doctors, clinics, and hospitals; keep credit in good standing; and approach organizations that have funds designated to help pay for medical care. Appendixes include sample letters to help families in writing to individuals or organizations about their child, resources that provide assistance to families, a glossary, and a bibliography.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: custserv@brookespublishing.com Web Site: http://www.pbrookes.com $29.00 if prepaid; add 10 percent shipping and handling if not prepaid.

Keywords: Children with special health care needs, Families, Financing, Health insurance

Annotation: This manual was developed to accompany an 8-hour class. It introduces the concept of mainstreaming and relates it to the principles of early childhood education and best practice guidelines for caring for children with special needs. Module one includes sections on the importance of working with families, ethical issues, laws protecting children with special needs, typical vs. atypical development, how children learn, suggestions for working with parents are included, and diversity resources. Module two deals with motor development and concludes with a bibliography and references. Module three covers social-emotional development and behavioral issues. [Funded by the Maternal and Child Health Bureau]

Contact: San Diego State University, Mainstreaming Project, 6505 Alvarado Road, Suite 108, San Diego, CA 92120, Telephone: (619) 594-4373 Price unknown.

Keywords: Americans With Disabilities Act, Child behavior, Child care, Child development, Children with special health care needs, Developmental disabilities, Ethics, Families, Learning, Legislation, Mainstreaming, Motor development, Parents, Psychosocial development, Special education

Annotation: This report describes the technical assistance provided to North Carolina's Division of Maternal and Child Health in developing strategies for monitoring and quality assurance for the care of children with special health care needs (CSHCN) in a Medicaid managed care system. The report includes chapters about background information, approaches to assuring quality of care, and sample indicators of quality of care. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org

Keywords: Children with special health care needs, Medicaid managed care, Monitoring, North Carolina, Quality assurance, Technical assistance

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org Available at no charge from the Web site.

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Keywords: Case studies, Children with special health care needs, Eligibility, Model programs, Monitoring, Quality assurance, Service coordination, Service delivery, State Children's Health Insurance Program

Annotation: This report compares 10 different methods for indentifying children with special health care needs. Each method represents a strategy that may be used by managed care organizations and/or state programs to identify children with special health care needs for program planning, quality assurance, utilization management, or referral purposes. The report is divided into the following sections: (1) introduction, (2) purpose of the study, (3) study questions, (4) background, (5) methods, (6) results, and (7) discussion. Extensive statistical information is presented in tables throughout the report. The report also contains endnotes.

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130, Gainesville, FL 32608, Telephone: (352) 265-7220 Fax: (352) 265-7221 Web Site: http://www.ichp.edu

Keywords: Children with special health care needs, Health care utilization, Quality assurance, Referrals, Screening

Annotation: This manual details the policies and procedures of the Maternal and Child Health and Children with Special Health Care Needs Program in the Virgin Islands. The manual includes the following: administration, roles, and responsibilities; service delivery process; information management and evaluation; and definitions of terms. The manual was developed as a technical assistance project offered by the Maternal and Child Health Bureau. Appendices include organizational charts, sliding fee scale information, classification specifications for administrative staff, interagency agreements, classifications and standards for health care professionals, standard medical record forms, protocols for tuberculin screens and hepatitis B vaccinations, billing and social work forms, prenatal risk criteria, home visit protocols, sickle hemoglobinopathy clinic protocols, data system flow charts, and nursing quality assurance indicators. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 828-5100 Fax: (202) 728-9469 E-mail: info@hsrnet.com Web Site: http://www.altarum.org

Keywords: Children with special health care needs, Evaluation, Health services, Manuals, Special health care services, State MCH programs, Title V programs, Virgin Islands, Virgin Islands

Annotation: This document gives the results of a nationwide survey of state agencies for children with special health needs that focused on care coordination. It gives information on care coordination definitions, quality guidelines, personnel preparation and training standards, and strategies for evaluating outcomes. It also includes a list of products developed by the states, such as assessment tools, service plans, policies and procedures, performance standards, and other documents. [Funded by the Maternal and Child Health Bureau]

Contact: Center for Automation and Care Coordination Enhancing Service Systems in Maternal and Child Health (ACCESS-MCH), P.O. Box 54700, Los Angeles, CA 90054-0700, Telephone: (213) 913-4400 Fax: (213) 913-1003 Available at no charge to Title V agencies; $15.00 for others.

Keywords: Case management, Children with special health care needs, Service coordination, State CSHCN programs, Surveys

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.

Contact: Special Olympics, Special Smiles, 1133 19th Street, N.W., Washington, DC 20036, Telephone: (202) 628-3630 Fax: (202) 824-0200 E-mail: spolk@specialolympics.org. Web Site: http://info.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Healthy_Athletes/Special_Smiles/default.htm Available at no charge from the Web site.

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

Annotation: This curriculum provides information for parents who are being trained to be parent navigators, to offer information and support to parents and professionals and to help families understand the process of medical evaluation for their child with special health care needs. The curriculum describes the roles of parent navigators, how to work with families, and note taking for the family during medical appointments. The curriculum includes forms for note taking during clinic appointments, a list of acronyms, a glossary, a form for giving permission for the coordinating agency to exchange information with medical professionals caring for the child, lists of resources, protocols from several clinics describing the parent navigator's role, and a copy of the iditaform (a medical and developmental history form used by multiple agencies). [Funded by the Maternal and Child Health Bureau]

Contact: Stone Soup Group, 307 East Northern Lights Boulevard #100, Anchorage, AK 99508-5228, Telephone: (907) 561-3701 Fax: (907) 561-3702 E-mail: ssg@stonesoupgroup.org Web Site: http://www.stonesoupgroup.org Price unknown.

Keywords: Children with special health care needs, Curricula, Family centered care, Family support, Medical home, Medical records, Parent education, Protocols, Training materials

Annotation: This guide explains the benefits and demands of advisory roles for families, presents some fundamental principles for being a successful advisor, and suggests practical tips for dealing with the common challenges that families encounter in these new roles. It also includes ideas and self assessment activities to identify the skills families bring to the advisory relationship and the supports they may need to participate successfully. The report in addition includes thoughts, observations, and suggestions of family members who are already participating as advisors. The guide is designed for the person who has never served in an advisory role, but thinks it might be rewarding and interesting. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Family-Centered Care, 7900 Wisconsin Avenue, Suite 405, Bethesda, MD 20814, Telephone: (301) 652-0281, ext. 16 Fax: (301) 652-0186 E-mail: institute@iffcc.org Web Site: http://www.familycenteredcare.org $10.00. Document Number: HRSA Info. Ctr. MCHJ112; ISBN 0-9642014-1-0.

Keywords: Children with special health care needs, Family centered care, Family centered services, Home visiting, Peer counseling, Peer education, Training materials

Annotation: This manual is designed to help guide child nutrition program personnel in meeting the nutritional requirements of students with special health care needs. It is also designed to provide guidance on the roles and responsibilities of child nutrition program personnel and to provide information on the types of disabilities students may have, food service concerns, and available resources. Sections in the manual include the following: 1) legislation, regulations, and interpretation, 2) identifying children with special needs, 3) nutrition problems found in children with special needs, 4) meeting nutritional needs, 5) the role of the child nutrition program, and 6) selected references and resources. Appendices provide a glossary of terms, a table of menu modifications, diagrams of self help feeding devices, and a pre and post test for child care employees.

Keywords: CSHCN programs, Child nutrition, Child nutrition programs, Children with special health care needs, Guidelines, Training materials

Annotation: This document describes some of the factors which must be considered in the early phases of planning for children with special dietary needs to enter school. Suggestions of ways in which the school food service can interact with other responsible parties in the school and the community at large to serve children with disabilities are provided. The guidance also includes advice on funding and liability questions. The material is based on the policy guidelines outlined in the Food and Consumer Service Instruction 783-2, Revision 2, Meal Substitutions for Medical or Other Special Dietary Reasons.

Contact: U.S. Food and Nutrition Service, 3101 Park Center Drive, Alexandria, VA 22302, Contact Phone: (202) 305-2590 Web Site: http://www.fns.usda.gov/fns Available at no charge.

Keywords: Child nutrition, Children with special health care needs, School food services, Schools, Students

Annotation: This manual is the final regulations issued by the Secretary of Education for the Assistance to States for Education of Children with Disabilities program under Part B of the Individuals with Disabilities Act and conforming regulations for the Early Intervention Program for Infants and Toddlers with Disabilities under part C of the Act.

Contact: U.S. Government Printing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (866) 512-1800 Secondary Telephone: (202) 512-1800 Fax: (202) 512-2104 E-mail: contactcenter@gpo.gov Web Site: http://www.gpo.gov Price unknown. Document Number: 1999-718-724/93672.

Keywords: Children with special health care needs, Disabilities, Early intervention programs, Federal aid, Federal legislation, Regulations, State CSHCN programs

Keywords: Awards, Health promotion, Managed care, Model programs, Models That Work, Primary care, Public private partnerships, Special health care needs, Underserved communities, Wisconsin

Annotation: This manual is a supplement to the Maternal and Child Health Bureau's "FY '92 Draft Guidance Material" which contains guidelines for states to use in preparing their applications for federal formula funds under the MCH Block Grant. It addresses the responsibilities of the state children with special health care needs (CSHCN)programs in developing community-based systems of services and is designed to assist states in responding to the "Guidance Material" provisions in this area.

Contact: National Center for Community-Based Service Delivery Systems, Iowa City, IA 52242, Telephone: (319) 335-9019 Fax: (319) 335-9019 Price unknown.

Keywords: Children with special health care needs, Community based services, State programs, Title V programs

Annotation: This document is excerpted from the "Home Care Program Policy Manual" of the University of Illinois at Chicago Division of Specialized Care for Children. It offers recommendations for enrollment of the child with special health needs into a community-based program. These include general guidelines for the roles and responsibilities of the parents, the case manager, and the hospital. It also includes guidance on developing an individualized educational plan for the child who is dependent on technology. [Funded by the Maternal and Child Health Bureau]

Contact: University of Illinois at Chicago, Division of Specialized Care for Children, 1919 West Taylor Street, Eighth Floor, Chicago, IL 60612, Telephone: (312) 996-6380 Fax: (312) 413-0367 E-mail: dssc@uic.edu Web Site: http://www.uic.edu/hsc/dscc Price unknown.

Keywords: Children with special health care needs, Special education, Technology dependence

Annotation: This document is excerpted from the "Home Care Program Policy Manual" of the University of Illinois at Chicago Division of Specialized Care for Children. It describes some of the differences and difficulties experienced by families and nurses working together in the home care of technology assisted children. It also provides information to help nurses establish and maintain a professional working relationship within a home environment. General guidelines are presented to help nurses prepare mentally for the experience of home care. More specific guidelines are also included that discuss establishing appropriate relationships with the child, the parents, and the siblings. [Funded by the Maternal and Child Health Bureau]

Contact: University of Illinois at Chicago, Division of Specialized Care for Children, 1919 West Taylor Street, Eighth Floor, Chicago, IL 60612, Telephone: (312) 996-6380 Fax: (312) 413-0367 E-mail: dssc@uic.edu Web Site: http://www.uic.edu/hsc/dscc Price unknown.

Keywords: Children with special health care needs, Home care services, Medically fragile children, Nurses, Parents, Technology dependence

Annotation: This document is excerpted from the "Home Care Program Policy Manual" of the University of Illinois at Chicago Division of Specialized Care for Children. These guidelines are intended to help parents of children with special health needs establish a professional working relationship with nurses within a home environment. They are designed to help parents prepare mentally for the experience of home care and they address parents' rights, responsibilities towards nurses, expectations of nurses, rules regarding the child, sibling relationships, and other matters. [Funded by the Maternal and Child Health Bureau]

Contact: University of Illinois at Chicago, Division of Specialized Care for Children, 1919 West Taylor Street, Eighth Floor, Chicago, IL 60612, Telephone: (312) 996-6380 Fax: (312) 413-0367 E-mail: dssc@uic.edu Web Site: http://www.uic.edu/hsc/dscc Price unknown.

Keywords: Children with special health care needs, Home care services, Medically fragile children, Nurses, Parents, Technology dependence

Annotation: This handbook presents guidelines that educational support personnel can use to help them provide quality care to children with special health needs. It defines education support personnel, reviews legal requirements pertaining to their delivery of safe health-related services in school settings, suggests a protocol for the care of these students, and indicates practices and policies that would enhance the delivery of these services. The handbook includes a glossary and resource lists.

Contact: National Education Association, NEA Professional Library Distribution Center, 1650 Bluegrass Lakes Parkway, Alphareta, GA 30004-7753, Telephone: (800) 229-4200 Fax: (770) 280-4134 $10.95, nonmembers; $4.95, members; plus $2.50 shipping and handling; prepayment required.

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Guidelines, Health care delivery, Personnel, Protocols, School based clinics

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.

Contact: Special Olympics, Special Smiles, 1133 19th Street, N.W., Washington, DC 20036, Telephone: (202) 628-3630 Fax: (202) 824-0200 E-mail: spolk@specialolympics.org. Web Site: http://info.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Healthy_Athletes/Special_Smiles/default.htm Available at no charge from the Web site.

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