Search Results: MCHLine

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: The goal of this project was to improve the knowledge base from which policymakers and program directors make decisions regarding implementation of community-based and home-based services for children with long-term health care needs. Strategies included a literature review, a review of current innovative home and community-based programs, and the dissemination of findings and recommendations by means of publications and a state-of-the-art conference. [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 PB94-106358.

Keywords: Children, Chronically Ill, Community-Based Health Services, Data Collection from, Home-Based Health Care, Primary Care Centers, Technology Dependence

Annotation: The goal of this project was to enable families to provide home-centered care for their special needs children, when home was the best option, by establishing a service delivery system. This system: (1) Promoted the availability and accessibility of comprehensive quality services that address physical, psychosocial, spiritual, and developmental needs; (2) encouraged continuity and coordination of care among all components of the child and family's interdisciplinary team; (3) promoted communication among caregivers; and (4) was reimbursable, accountable, and responsive to changing 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 PB93-161891.

Keywords: 99-457, Chronically Ill, Coordination of Health Care, Families, Family-Centered Health Care, Home-Based Health Care, Interdisciplinary Teams, Interdisciplinary Teams, L, P, Pediatric Care Providers, 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, 3135 Old Jacksonville Road, Springfield, IL 62704-6488, Telephone: (217) 558-2350 Secondary Telephone: (800) 322-3722 Fax: (217) 558-0773 E-mail: [email protected] Web Site: http://dscc.uic.edu Price unknown.

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

Annotation: This volume provides information on major professional and personal competencies of special librarians and provides examples of the many roles special librarians can perform in this era of print and electronic information resources. It includes definitions of special competencies, a list of competencies for special librarians of the 21st century, and a report on using competencies as a performance appraisal and compensation tool. Two sections end with a list of references.

Contact: Special Libraries Association, 331 South Patrick Street, Alexandria, VA 22314-3501, Telephone: (703) 647-4900 Contact Phone: (202) 234-4700 ext.643 Fax: (703) 647-4901 E-mail: [email protected] Web Site: http://www.sla.org $17.00 for SLA members; $22.00 for non SLA members includes shipping and handling; prepayment required. Document Number: ISBN 0-87111-469-0.

Keywords: Information networks, Librarians, Library services, Professional education, Technology dependence

Annotation: The objective of this study was to create a data base that will aid in further describing technology-dependent children being cared for in their homes. Specific aims are to: (1) Identify selected demographic characteristics of technology-dependent children and their families; (2) define home care of technology-dependent children in terms of consumption of resources; (3) test selected hypotheses regarding the effects of the illness of these children on their families; and (4) provide the means for these data to be used by others in the development of recommendations for nursing practice relating to the care of technology-dependent children and their families. Thirteen cities in the United States served as areas from which data was collected. Children were between three months and nineteen years of age and had been technology-dependent and being cared for at home for at least a month. Using structured interviews, data was obtained from parents receiving services from private and public home health agencies. Among the study's findings were the following: (1) The financial burden and social impact on the family and personal strains vary depending on the type of dependency; (2) depression does not vary significantly among the four types of dependency; (3) satisfaction varies significantly with caregivers; and (4) the quality of life of technology-dependent children is apparently affected by persons who work with them in their home. [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 PB93-181857.

Keywords: Chronically ill, Data bases, Data collection, Families, High technology home care, Technology dependence

Annotation: This booklet provides school nurses a listing of resources and training materials to help them care for children with special health needs. It indicates changes in the care of children assisted by medical technology since 1980 including demographic and medical trends, changes in federal legislation which provide for the education of these children, and lists of resource materials and organizations. The booklet organizes the resource materials topically: manuals, universal precautions, nutrition and medication, elimination, respiratory, equipment, training community personnel, financing, and transportation. [Funded by the Maternal and Child Health Bureau]

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Keywords: Child health, Children with special health care needs, Medically fragile children, Resources for professionals, School health services, Special education, Technology dependence

Annotation: This project determined the number of technology-dependent children in home care in the project area and identified problems encountered by their caregivers and support service providers in order to develop a model program for children who require technologically sophisticated care. Other activities included development and implementation of protocols, standards of care, and teaching materials; dissemination of information; and development of a clinical outreach program. [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 PB93-196830.

Keywords: Chronic illnesses and disabilities Rural Population, Cystic Fibrosis, Financing Health Care, Home-Based Health Care, Outreach, Reimbursement, Technology Dependence

Annotation: This study was a census of all children defined as depending on extraordinary nursing services on a daily basis. Because this study was longitudinal, investigators were able to trace the prevalence of these conditions over time and look at changes within device use or in specific diseases, as well as changes in the etiologies of medical dependency. These data should be useful for program planning purposes as well as for tracking preventable causes of long-term disability. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB92-161132.

Keywords: Chronically Ill, Data Bases, Data Collection, Pediatric Care Providers, Technology Dependence

Annotation: This project addressed the complex service needs of children who require sophisticated technological interventions and an environment which fosters developmental progress. Activities included: providing medical services to children; establishing a licensure category for Prescribed Pediatric Extended Care (PPEC) centers; disseminating information on the project through monographs, workshops, conferences, and publications; providing ongoing staff training and family support and educational services; establishing third-party reimbursement policies which will make the center financially self-supporting; and conducting a cost-effectiveness evaluation comparing the PPEC centers to other forms of care. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB92-103423.

Keywords: Apnea, Chronically Ill, Cystic Fibrosis, Developmentally Delayed/Disabled, Gastrostomy, Injuries, Reimbursement, Technology-Dependence, Uninsured persons, Vater', Ventilator Dependence, s Syndrome

Annotation: This book reports on a comprehensive evaluation of three SPRANS demonstration projects that developed state-wide systems of care for ventilator-assisted children. It presents findings based on both quantitative and qualitative data gathered about the feasibility and success of developing home alternatives for these children. It examines the kinds of programs developed, and the impact the programs had on on systems of care, on the children, on the families, and on costs of their care, and presents lessons and implications from the study.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available in libraries. Document Number: HRSA Info. Ctr. MCHC006.

Keywords: Children with special health care needs, Mechanical ventilators, Program evaluation, SPRANS, Technology dependence

Annotation: Developed by the Task Force on Technology-Dependent Children, this reports on alternatives to institutional care for technology-dependent children. The task force conducted a comprehensive examination of barriers that prevent the provision of appropriate care in a home or community setting. It also examined changes necessary in the provision and financing of health care in private and public health care programs to foster home and community-based alternatives to the institutionalization of technology-dependent children. The Task Force developed definitions for technology-dependent children, appropriate care, and case management which are also contained in this report.

Contact: HathiTrust Digital Library, University of Michigan, Telephone: (734) 764-8016 E-mail: [email protected] Web Site: https://www.hathitrust.org/digital_library Available from Hathitrust via participating libraries. Document Number: HRSA Info. Ctr. MCHB347.

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Keywords: Children with special health care needs, Community based services, Home care, Technology dependence

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

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Keywords: Children with special health care needs, Health care costs, Health care financing, Home care, Hospitalization, Medicaid, Technology dependence

Annotation: This report describes five case management programs that create alternatives to hospitalization and institutionalization for technology dependent children in Illinois, Iowa, Louisiana, Maryland, and Pennsylvania. For each program, the report discusses mission and goals, organization, program eligibility criteria, population served, program services, other activities, financing of services, program budget and personnel resources and costs. Appendices include forms and checklists used by the agencies and patient information handouts. [Funded by the Maternal and Child Health Bureau]

Contact: National Health Law and Policy Resource Center, University of Iowa, 412 Boyd Law Building, Melrose and Byington Streets, Iowa City, IA 52242-1113, Telephone: (319) 335-9067 Contact Phone: (319) 335-9067 Fax: (319) 335-9098 E-mail: [email protected] Web Site: http://blogs.law.uiowa.edu/nhlp Available in libraries.

Keywords: Case management, Child health, Children with special health care needs, Home care, Mechanical ventilators, Medically fragile children, Technology dependence

Annotation: This report looks at the opportunities that technology-dependent children have for obtaining home care coverage under the Medicaid program. It is divided into four sections that provide information on: 1) the four basic Medicaid options available for financing technology-dependent children (regular waivers, model waivers, Katie Beckett waivers, and state plan amendments), 2) the current level of state activity in each of the options, 3) state policies and practices that limit the number of severely disabled children able to participate in the Medicaid home care program options, and 4) the Medicaid and Crippled Children's Services (CSS) financing opportunities that would be available in five states for three hypothetical technology-dependent children.

Contact: Maternal and Child Health Policy Research Center, 750 17th Street, N.W., Suite 1100, Washington, DC 20006-4607, Telephone: (202) 223-1500 Fax: (202) 496-9067 Available from the website.

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Keywords: Access to health care, Children with special health care needs, Financing, Home care services, Medicaid, Technology dependence, Waivers

Annotation: This report contains two sections. Section one describes developmental issues of concern in 1985: Serious viral infection in persons with developmental disabilities, issues of technological intervention for children with disabilities; community based services for chronically ill or disabled children and their families; and fragile-X syndrome. Section two contains examples of linkages between university affiliated programs and state and local programs and the training needs of state programs.

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Communicable diseases, Fragile X syndrome, Medically fragile children, Program planning, Technology dependence

Annotation: The Surgeon General's Workshop on Children with Handicaps and Their Families was convened in 1982 in order to develop recommendations for strategies to recognize the special burden and challenges borne by the parents and siblings of children with disabilities and to stimulate the provision of resources to safely support these children in their communities. The workshop concentrated on the specific problems of the ventilator-dependent child, and the findings for this prototype were extrapolated for their implications for all handicapped children. This report contains summaries of the presentations made at the workshop, and the recommendations developed by the workshop participants. This report contains summaries of the presentations made at the workshop, and the recommendations developed by the workshop participants.

Contact: National Library of Medicine, U.S. Department of Health and Human Services, 8600 Rockville Pike, Bethesda, MD 20894, Telephone: (301) 594-5983 Secondary Telephone: (888) 346-3656 Fax: (301) 402-1384 E-mail: [email protected] Web Site: http://www.nlm.nih.gov Available from the website.

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Keywords: Children with special health care needs, Community based services, Family centered care, Mechanical ventilators, Medically fragile children, Technology dependence