Search Results: MCHLine

Annotation: This manual is intended as a guide for health professionals to establish a new health care delivery system for transitioning adolescents with chronic illness to adult health care. Health professionals learn about eight objectives: exploring one's commitment to transition, identification of initial partners; securing institutional support; assuring economic feasibility, developing a structure, developing a successful partnership, and achieving a successful transfer of patients. A self-assessment form is included.

Contact: Georgetown University Center for Child and Human Development, Box 571485, Washington, DC 20057-1485, Telephone: (202) 687-5503 Secondary Telephone: (202) 687-5000 Fax: (202) 687-8899 E-mail: [email protected] Web Site: http://gucchd.georgetown.edu Price unknown.

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Keywords: Access to health care, Adolescents with special health care needs, Chronic illnesses and disabilities, Health services, Special health care needs, Transition planning, Transitions, Young adults

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 Available in libraries.

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: The purpose of this report is to present the findings of the fourth phase of a longitudinal study of a multi-racial cohort of youth, born on the island of Kauai, Hawaii in 1955. The results of the first three phases of the study (prenatal period to age 10) were published in the book The Children of Kauai (1971). The purposes of this report are to follow up where the previous study left off at age 10, to document the course of the learning and behavior disorders diagnosed in childhood, to take a look at new problems and new promises in adolescence, to examine a concerned community's response to its at risk youth, to consider factors that contributed to improvement, and to evaluate the predictive power of the diagnostic tools of the previous phases of the study. [Funded by the Maternal and Child Health Bureau]

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Keywords: Adolescent behavior, Adolescents, Hawaii, Learning disabilities, Reports

Annotation: These forms are a follow up survey of the former participants in the University Affiliated Cincinnati Center for Developmental Disorders training programs. Theyprovide space to record information about the participants and their comments and assessment of the program. One version is for former trainees with 300+ contact hours; the other is a modified version for trainees with 300+ contact hours who participated in the Interdisciplinary Leadership Core Curriculum since 1987-1988.

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Keywords: Developmental disabilities, Evaluation, MCH training, Surveys

Annotation: This project attempted to improve the health status of children in families in which one or both parents have mental retardation by reducing the risks associated with lack of immunization, poor nutrition, undiagnosed medical or developmental problems, injuries, and inadequate early stimulation. Efforts included both direct services (such as immunization, screening, and home care programs) and a consultation and technical assistance program aimed at improving the accessibility of the service delivery system for these children. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-201051.

Keywords: Access to Health Care, Barriers to Health Care, Health Education, High risk children, High risk groups: Families, Mental Retardation, Parents, Parents with disabilities, Preventive Health Care, Primary Care

Annotation: This project focused on developing a systematic approach to integrate medical, vocational, educational, psychosocial, and developmental services for adolescents with physical disabilities and/or chronic illness who are at risk in their transition to maturity. Project objectives were to (1) create an administrative structure at the State level and in two pilot sites for provision of an integrated continuum of health and education services; (2) enable service providers, through training and collaboration, to coordinate service planning for the target population; (3) enable the adolescent and family, through counseling and training, to function as their own "case manager"; and (4) monitor and evaluate the model to determine the feasibility for replication in Alabama and/or other states. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-147031.

Keywords: Adolescents with special health care needs, Advocacy, Chronic illnesses and disabilities, Community-Based Health Care, Coordination of Health Care, Data Bases, Interdisciplinary Teams, Rural Population, Urban Population

Annotation: The goals of this project were to disseminate information and to provide technical assistance on case management services for children with special health care needs and their families. The project served organizations engaged in the design, implementation, and assessment of case management activities. Activities included the collection of documents, the creation of a case management database, an analysis of case management services, and the development of a working paper "Focus and Functions of Case Management." [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-147106.

Keywords: Case Management, Chronic illnesses and disabilities, Data Bases, Data Collection

Annotation: This project developed a model integrated service system of educational, health, and social service programs for families of Hawaiian children (prenatal to age 5 years) who are disproportionately at risk for health, social, and educational handicaps. Four Native Hawaiian Family Based Education Centers were established, with three core educational components: A home visiting program, a traveling preschool program, and a center-based preschool. Activities included conducting an extensive assessment of community needs and developing ongoing ties with institutions of higher learning in the State. Strong health promotion and social service programs complemented the educational focus, and a case management system helped families assess their own goals in each of these areas. Community participation and ownership of the program were critical components. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-147023.

Keywords: Community-Based Education Programs, Data Collection, Early Intervention, Education, Family-Based, Hawaiians, Home Visiting, Infant Mortality, Learning Disabilities, Low Birthweight, Parents, Prenatal Care

Annotation: This project sought to strengthen family-centered care for Iowa children with special health care needs by expanding parent participation in CHSC services development, by creating a statewide parent consultant network, and by enhancing community opportunities for parents to meet with one another and with professionals in a family-oriented experience. Program plans included an annual statewide issues forum; a regional parent consultant network composed of 2 parents from each of the 13 CHSC service regions; and family enrichment weekends designed to bring together parents and children for discussion, reflection, and recreation. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-146777.

Keywords: Chronic illnesses and disabilities, Developmental disabilities, Families, Family-Centered Health Care, Parent Networks, Parent-Professional Communication, Parents

Annotation: This project developed a model for care and services, a services resource network and coordinated education and training resources. The project worked with over 40 families, published a book, Homeward Bound: Resources for Living at Home with a Chronically Ill Child, and produced training videotapes for health care providers. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-152957.

Keywords: Chronic illnesses and disabilities, Dependence, Home-Based Health Care, Technology, Ventilator Dependence

Annotation: Project Copernicus, a dual-State initiative for Maryland and Virginia, developed, demonstrated, and evaluated training programs in family-centered service coordination with target groups of professional service providers and parents in urban, rural, and suburban areas of Maryland and Virginia. Project Copernicus demonstrated how to provide family-centered care for families with children with special health needs by assisting both parents and professional service providers to develop and use family-centered service coordination activities (case management). [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB97-121859.

Keywords: Access to Health Care, CSHCN, Case Management, Chronic illnesses and disabilities, Coordination of Health Care, Disabled, Education of Health Professionals, Families, Family-Centered Health Care, Fragmentation of Services, Parent Education, Parents, programs

Annotation: This network fostered collaboration among State programs for children with special health needs in New England. Activities included documenting quality assurance and monitoring activities; reviewing existing standards of care and developing new standards; facilitating interagency and public/private cooperation; and publishing the New England Status Report which covered legislation and program initiatives. The most concrete outcome has been the publication of Enhancing Quality: Standards and Indicators of Quality Care for Children with Special Health Care Needs. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-158681.

Keywords: Chronic illnesses and disabilities, Coordination of Health Care, Networking

Annotation: This project sought to improve information sharing among public agencies, third-party payers, special projects of regional and national significance (SPRANS), and employers in Minnesota. Activities included an annual invitational workshop; technical assistance; a quarterly newsletter; a continuing education center; and the guidelines, *How to Develop a Community Network.* [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-163549.

Keywords: Chronic illnesses and disabilities, Community-Based Health Care, Continuing Education, Coordination of Health Care, Families, Financing Health Care, Medicaid, Networking

Annotation: This project sought to demonstrate that a system of reimbursable, cost-effective, home-based support services can be implemented for families with chronically ill children. The project objectives were to facilitate the provision of home-based care for chronically ill children through the following activities: (1) Developing a regional network of medically skilled respite providers; (2) establishing self-help mutual support groups for chronically ill children and their parents and siblings; (3) training professionals, paraprofessionals, and volunteers; and (4) disseminating project findings and recommendations. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-158699.

Keywords: Arthritis, Asthma, Bronchopulmonary Dysplasia, Chronic illnesses and disabilities, Congenital Heart Disease, Cystic Fibrosis, Families, Feeding Disorders, Hemophilia, Home-Based Health Care, Kidney Disease, Leukemia, Low income groups, Muscular Dystrophy, Nurses, Respiratory Technologies, Respite Care, Sick Kids (Need) Involved People (SKIP), Sickle Cell Disease, Support Groups, Tay-Sachs Disease, Ventilator Dependence

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

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB97-121834.

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

Annotation: The goal of this project was to ensure the successful transition to adulthood of adolescents with physical disabilities or chronic illnesses by means of interventions with families, the health care team, and the adolescents themselves. The project sought to encourage the involvement of families in planning for the health care of their children, to modify staff behaviors and institutional practices to promote family autonomy, and to broaden treatment goals so that they included health maintenance and future planning for adolescents with special needs. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-196962.

Keywords: ., Adolescents with special health care needs, Advocacy, Chronic illnesses and disabilities, Families, Family-Centered Health Care Transition, Support Groups

Annotation: The goal of this project was to assist in the formation of a collaborative effort involving the government, providers, private payers, and families in order to reconcile the operational difficulties of achieving health care cost containment while retaining quality, access, and family-centeredness. The project sought to: develop approaches to health care financing that are sensitive to the needs of families with children who have special health care needs; assist families with special health care needs in dealing with financial problems which pose barriers to obtaining appropriate health services; and disseminate information regarding financing of care for children with special health care needs. Family health benefits counselors assisted approximately 1600 over the course of the project by conducting intake interviews, informing families about health care financing options, assisting in completing applications and/or filing appeals or denials of public or private benefits and facilitating negotiations with medical creditors. Consultation with legal backup and referral for legal intervention were distinguishing aspects of the project. Benefits counselors and project attorney worked with state and county administrative and regulatory agencies, private insurers and health care providers and associations to resolve systemic problems. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-199156.

Keywords: Advocacy, Case Management, Chronic illnesses and disabilities, Families, Family health, Financial Counseling, Financing Health Care, Health Insurance, Health Maintenance Organizations (HMOs), Medicaid, Reimbursement

Annotation: The mortality, morbidity, and economic burden associated with childhood trauma and illness represent a serious public health problem in New Mexico. This is particularly true for rural and minority families. The long term goals of this project were to reduce the frequency and seriousness of negative outcomes for children and families who have suffered an emergency and to promote preventive activities directed at reducing injuries that generate pediatric emergencies. The project demonstrated progress in reaching these long term goals through: (1) increased childhood injury prevention programs statewide including promoting EMTs to be prevention advocates in their communities; (2) improved clinical care in the pediatric emergency medical system which includes prehospital and hospital care providers; (3) improved data collection and analysis for pediatric injury and illness; and (4) coalition building. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB98-155716.

Keywords: American Indians, Bilingual Services, Chronic Illnesses and Disabilities, Data Collection, Emergency Medical Services for Children, Emergency Medical Technicians, Injury Prevention, Rural Population

Annotation: This fact sheet provides an overview of Fragile X syndrome (FXS). It describes what Fragile X is; explains what causes it; and discusses the conditions that are common among children with Fragile X. It also lists some of the signs of FXS and explains what parents should do if they think their child has FXS. One side of the fact sheet is in English and the other is in Spanish.

Contact: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov Available from the website.

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Keywords: Consumer education materials, Disabilities, Fragile X syndrome, Genetic disorders, Spanish language materials

Annotation: This fact sheet lists resources on sexuality education, education curricula, health conditions and disabilities, online learning, educators and counselors, and national resources related to sexuality and children and adults with disabilities. Resources also cover parenting with a disability, reproductive health, sexual violence, and screening for abuse or violence.

Contact: D.C. Resource Center for Children with Special Health Care Needs, Washington, DC Web Site: http://dccshcn.org Available from the website.

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Keywords: Adolescents with special health care needs, Adults, Children with special health care needs, Disabilities, Sexuality education