Search Results: MCHLine

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]

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

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]

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]

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 develop a statewide system of community-based, comprehensive care/case management and family support services. Program strategies included developing a training curriculum for the skilled delivery of home-based family support services by medical professionals, paraprofessionals, and parents; piloting a respite providers' network; providing statewide training on the provision of family support services; and developing and disseminating a statewide directory of trained family support service providers. [Funded by the Maternal and Child Health Bureau]

Keywords: 99-457, Case Management, Chronically Ill, Community-Based Health Care, Coordination of Health Care, Family-Based Health Care, Financing Health Care, Fragmentation of Services, L, P, Parents, Rural Population

Annotation: The overall goal of this project was to develop a replicable system of family-centered, community-based case management for children with special health care needs in a frontier State. Targeted communities were under 20,000 in population and served areas at least 50 miles from a level II facility. The project objectives were to: (1) Upgrade case management and assessment skills of local public health nurses; (2) develop family-centered, community-based case management programs that address the needs of the family and the child with special needs; and (3) develop community-based teams that empower families to actively participate in identifying and meeting educational, social, psychological, health, and financial needs for themselves and the child with special needs. [Funded by the Maternal and Child Health Bureau]

Keywords: Case Management, Chronically Ill, Community-Based Health Care, Education of Health Professionals, Families, Family-Centered Health Care, Public Health Nurses, Rural Populations

Annotation: This project sought to increase coordination of service provision to chronically ill and disabled children, with a special focus on Native American children. Activities included organizing an annual conference, tracking legislation, establishing a committee which analyzed relevant portions of the state budget, and conducting a survey on the number of children receiving case management services. [Funded by the Maternal and Child Health Bureau]

Keywords: American Indians, Chronically Ill, Coordination of Health Care, Families, Fragmentation of Services, PL 94-142

Annotation: This project provided a model program for American Indian families and the professionals who served them. The program goals were to identify cultural, systemic, institutional, and policy barriers that inhibit Native American family participation in the "Western" health care/case management system; improve case management by facilitating effective communication between Native American families and the non-Native American health care professionals who serve them; and increase Native American family participation in health care policy development and planning forums in order to promote changes that improve services for Native American children and families. Activities included developing a videotape illustrating effective cross-cultural communication strategies for non-Indian health care providers and training an Indian parent advocate to help families seen at IHS special pediatric clinics. [Funded by the Maternal and Child Health Bureau]

Keywords: American Indians, Case Management, Chronically Ill, Community-Based Health Care, Coordination of Health Care, Developmentally Delayed/Disabled, Family-Based Health Care, Indian Health Service (IHS), Low income groups, Parents, Rural Population

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]

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 purpose of this institute was to maintain and strengthen leadership capabilities for medical, nursing, and administrative personnel in programs providing services to children with special health care needs. One institute and one topical seminar were given each year. The institute offered orientation for new staff concerning the history, organization, funding, purposes, and functions of CSHCN programs. The topical seminar attracted senior CSHCN program officers who discussed current issues, developed problem-solving strategies, and forecasted future trends in health care services for children with special health care needs. [Funded by the Maternal and Child Health Bureau]

Keywords: Continuing education, Health professionals, Leadership training, Professional education, Special health care needs

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]

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 project established a model program for the coordination of early identification and assessment services for infants 0-3 years of age at high risk for major handicaps. It aimed to make appropriate developmental screening available as close as possible to the infant's home community, to provide the necessary developmental screening training to local health and educational service providers, and to provide the regional coordination for the many agencies and professional involved. [Funded by the Maternal and Child Health Bureau]

Keywords: Clinics, Coordination of Health Care, Early Intervention, Education of Health Professionals, High risk infants, Rural Population, Screening

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

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

Annotation: The goal of this project was to develop an optimum habilitation and/or rehabilitation process for children (ages birth to 21 years) with special health needs, within Puerto Rico's Caguas Health Region. The principal outcomes of this project were the development of an electronic central register for patients with special health needs in the Caguas Health Region, and the interagency work agreement and interagency referral form, which have enabled project staff and Pediatric Center personnel to share information and coordinate services with other government service providers from central and local levels. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Chronically Ill, Collaboration of Care, Community-Based Health Care, Confidentiality, Families, Family-Based Health Care, Habilitation, Home Visiting, Referrals, Rehabilitation

Annotation: The purpose of this project was to develop and apply a model for providing comprehensive nutrition services for children in Utah who have certain developmental disabilities or disease conditions. The objectives of the project were to (1) provide comprehensive nutrition care and expand resources; (2) demonstrate the costs and benefits of providing nutrition services to those children with selected developmental disabilities using an economic model; and (3) obtain third-party reimbursement for nutrition services provided to children with selected special health needs. [Funded by the Maternal and Child Health Bureau]

Keywords: Cystic Fibrosis, Developmentally Delayed/Disabled, Financing Health Care, Inborn Errors of Metabolism, Neonatal Intensive Care Unit(NICU), Nutrition, Reimbursement

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]

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]

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

Annotation: The Child and Family Support Project was designed to facilitate and support access to and coordination of health care services for children with chronic conditions and their families in order to strengthen family capacity to care for their child in the community setting. The project included activities to identify and develop models for services through: improvement of communication and coordination between community-based services; development of a data base of resources for the populations; enhancement of transition from institutional to community or least restrictive environment; and support for the families of children with chronic conditions. [Funded by the Maternal and Child Health Bureau]

Keywords: Chronically Ill, Coordination of Health Care, Data Bases, Family Support, Family-Based Health Care, Networking

Annotation: The goal of this project was to improve the overall system of health care delivery for West Virginia children with special health needs. Specific goals were to: (1) Provide individualized family empowerment training with specific emphasis on skills in case management; (2) strengthen the Handicapped Children's Services system of case management; (3) provide coordinated, comprehensive medical and educational evaluations for children with special health needs; (4) establish a movement recognizing parents as equal partners within the professional team; (5) enhance networking through a parent-provider interdisciplinary, interagency conference; (6) identify a primary medical home for every child with special health needs; (7) emphasize the role of the primary care physician as a member of the community team; (8) assure continuation of the project beyond the funding period; and (9) expand services to all children with special health needs in West Virginia. [Funded by the Maternal and Child Health Bureau]

Keywords: Access to Health Care, Case Management, Children with Special Health care Needs, Families, Family Professional Collaboration, Interagency Cooperation, Medical Home, PL 99-457, Parent Professional Communication, Parents, Primary Care, Service Coordination

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]

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: This project was part of an ongoing effort to identify and address issues related to developmental disabilities among Native American children in Wisconsin to assure that proper diagnostic and followup services are provided to this population. Tribes, State and local agencies, and volunteer organizations were involved in a collaborative effort to design and establish a long-term, community-based, high quality program in each tribal community in Wisconsin to serve the special health care needs of Native American children. The two main goals of the project were to: (1) Become an integral part of the tribal service systems, and (2) improve those systems in such a way that they address both the needs of developmentally disabled children and the issues related to the prevention of disabilities. [Funded by the Maternal and Child Health Bureau]

Keywords: American Indians, Community-Based Health Care, Coordination of Health Care, Data Collection, Developmentally Delayed/Disabled, Fetal Alcohol Syndrome