Skip Navigation

Strengthen the Evidence for Maternal and Child Health Programs

Sign up for MCHalert eNewsletter

Search Results: MCHLine

Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 20 (275 total).

Bronheim S, Fiel S, Schidlow D, MagrabP, Boczar K, Dillon C. n.d.. Crossings: A manual for transition of chronically ill youth to adult health care. Harrisburg, PA: Pennsylvania Department of Health, 52 pp.

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.

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

Simmons E. n.d.. Youth in Transition—The Alabama Experience: [Final report]. Montgomery, AL: Alabama Department of Education, 32 pp.

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

Freedman S. n.d.. Case Management Information/Consultation Base for Services to Children with Chronic Illnesses and Disabilities: [Final report]. Gainesville, FL: Institute for Child Health Policy, 49 pp.

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

Nelson R. n.d.. CHSC Parent Partnership Project: [Final report]. Iowa City, IA: University of Iowa , 46 pp.

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

Gates A. n.d.. Interagency Home Care Model for Ventilator Assisted Individuals in Louisiana: [Final report]. New Orleans, LA: Children's Hospital, 17 pp.

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

Force J. n.d.. Project Copernicus [Final report]. Baltimore, MD: Maryland Department of Health and Mental Hygiene, 15 pp.

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

Epstein S. n.d.. New England SERVE: A Planning Network for Children with Special Health Care Needs [Final report]. Boston, MA: Massachusetts Health Research Institute, 29 pp.

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

Henry W. n.d.. PATHFINDER: A Project to Improve Systems of Care for Children with Chronic Health Conditions [Final report]. St. Paul, MN: Pathfinder Resources, Inc., 28 pp.

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

Sherman B. n.d.. Home-Based Support Services for Chronically Ill Children and Their Families [Final report]. Albany, NY: New York State Department of Health, 35 pp.

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

Williams S. n.d.. Improving Community-Based Services for Special Needs Children and Their Families in Rural Utah [Final report]. Salt Lake City, UT: Utah Department of Health, 19 pp. pp.

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

Hostler S. n.d.. Family Autonomy Project [Final report]. Charlottesville, VA: University of Virginia, 50 pp.

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

Camic N. n.d.. Families in the Changing Health Care Marketplace [Final report]. Madison, WI: Center for Public Representation, 21 pp.

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

Olson L. n.d.. New Mexico Emergency Medical Services for Children [Final report]. Albuquerque, NM: University of New Mexico, 5 pp.

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

National Association of Chronic Disease Directors. [2024]. The connection between poor oral health and chronic disease. Atlanta, GA: National Association of Chronic Disease Directors, 43 pp.

Annotation: This report provides information on the link between poor oral health and chronic disease and on efforts of the National Association of Chronic Disease directors (NACDD) to develop a national framework for medical-dental integration (MDI) and discusses NACDD's work with five states (Colorado, Connecticut, North Dakota, South Carolina, and Virginia) on projects whose purpose was to document successful approaches for increasing the effectiveness of state oral health and chronic disease collaborations with dental clinics and community providers to screen for chronic conditions such as hypertension, pre-diabetes, and diabetes. Each project is discussed, along oral health outcomes for each state and future directions.

Contact: National Association of Chronic Disease Directors, 2200 Century Parkway, Suite 250, Atlanta, GA 30345, Telephone: (770) 458-7400 Web Site: https://chronicdisease.org Available from the website.

Keywords: Chronic illnesses and disabilities, Colorado, Connecticut, Diabetes, Hypertension, North Dakota, Oral health, Service coordination, Service integration, South Carolina, State programs, Virginia

Institute for Exceptional Care, Action to Build Clinical Confidence and Culture (ABC3) Coalition. 2024. A national roadmap for disability-inclusive healthcare: A plan for clinicians to learn how to give the best healthcare possible to people with intellectual and developmental disabilities (IDD). Washington, DC: Institute for Exceptional Care, 56 pp.

Annotation: This roadmap presents goals and action steps to promote the ability of health professionals working in the areas of primary care, mental health, behavioral health, emergency care, sexual/reproductive health, and dentistry to serve people with intellectual and/or developmental disabilities (IDD) equitably and effectively. Topics include the need for a national strategy to improve health care for people with IDD, initiatives to improve training for health professionals, building the roadmap, building consensus, priority action steps, and accrediting bodies for health care facilities.

Contact: Institute for Exceptional Care, 1717 K Street, N.S., Suite 900, Washington, DC 20006, Telephone: (202) 843-9260 E-mail: [email protected] Web Site: https://www.ie-care.org Available from the website.

Keywords: Chronic illnesses and disabilities, Health equity, Oral health, Oral health equity, Special health care needs, Training

Delta Dental Plans Association. 2024. The 2024 state of America's oral health and wellness report. Oak Brook, IL: Delta Dental Plans Association, 14 pp.

Annotation: This annual report commissioned by Delta Dental provides data on and an analysis of oral health and overall health behaviors among adults and children across the United States. The report also discusses consumers’ understanding of the link between oral health and chronic conditions, the connection between oral hygiene and mental health, and the benefits of receiving preventive oral health care. Also addressed are adults' adherence to preventive oral health behaviors, trends in preventive oral health care visits, and dental insurance coverage among adults.

Contact: Delta Dental Plans Association, 1515 West 22nd Street, Suite 450, Oak Brook, IL 60523, Web Site: https://www.deltadental.com Available from the website.

Keywords: Chronic illnesses and disabilities, Data, Health care utilization, Mental health, Oral health, Prevention

National Council on Disability. 2023. Incentivizing oral health care providers to treat patients with intellectual and developmental disabilities. Washington, DC: National Council on Disability, 94 pp.

Annotation: This report provides information on a study of oral health professionals conducted to explore factors and policy incentives that influence their decisions on treating people with intellectual and developmental disabilities and on participating in government programs that provide oral health care coverage for this population. Topics includes research questions, input from the population, input from health professionals, demonstrating a return on investment, and promising practices.

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: [email protected] Web Site: http://www.ncd.gov/ Available from the website.

Keywords: Chronic illnesses and disabilities, Costs, Developmental disabilities, Intellectual development, Oral health, Public policy, Research, Special health care needs

Ziemann M, Salsberg E, McManus M, White P, Schmidt A. 2023. Strengthening the adult primary care workforce to support young adults with medical complexity transitioning to adult health care. Washington, DC: George Washington University ,

Annotation: This report presents recommendations to strengthen the primary care workforce for young adults with medical complexity (YAMC) by promoting and increasing the supply of well-prepared adult primary care physicians for YAMC transitioning to adult care. Included is an overview of the YAMC population and the current care landscape, including health workforce and financing consideration. The recommendations were developed by a national advisory committee established by the National Alliance to Advance Adolescent Health/Got Transition and the George Washington University Fitzhugh Mullan Institute for Health Workforce Equity.

Contact: George Washington University , Fitzhugh Mullan Institute for Health Workforce Equity , 2175 K Street, NW, Suite 250, Washington, DC 20037, Telephone: (202) 994-3423 Web Site: https://www.gwhwi.org/

Keywords: Adolescents, Chronic illnesses and disabilities, Primary care, Professional education, Professional training, Program improvement, Transition planning, Transitions, Young adults

Hawaii Oral Health Coalition. 2022?. Reinstating Hawai'i adult Medicaid dental benefits in 2022. Honolulu, HI: Hawaii Public Health Institute, 2 pp.

Annotation: This fact sheet provides information about the effects of reinstating Hawai'i's adult Medicaid dental benefits in 2022. Statistics are presented on the number of Hawai'i Medicaid beneficiaries with no diagnostic, preventive, or dental coverage and who visited the emergency department (ED) with a dental-related diagnosis between 2016 and 2020, the total cost of ED visits with a principal dental diagnosis during this period, and the percentage of ER visits with a principal dental diagnosis during this period who were Medicaid beneficiaries. Also provided are estimated savings from reinstating the benefits as well as information about the association between poor oral health and several chronic conditions and other negative health outcomes.

Contact: Hawaii Public Health Institute, 707 Richards Street, Suite 300, Honolulu, HI 96813, Telephone: (808) 591-6508 E-mail: [email protected] Web Site: https://www.hiphi.org Available from the website.

Keywords: Access to health care, Chronic illnesses and disabilities, Costs, Dental insurance, Emergency room data, Hawaii, Low income groups, Medicaid, Oral health, Prevention, State information, Statistical data

National Network for Oral Health Access. 2022. Improving care coordination and health outcomes for diabetic patients through medical and dental integration. Denver, CO: National Network for Oral Health Access, 2 pp. (Health center oral health program promising practice)

Annotation: This report describes Improving Care Coordination and Health Outcomes for Diabetic Patients Through Medical and Dental Integration, a program run by CommUnityCare (CUC). The program’s purpose is to increase access to oral health care and general health care for people with diabetes to help improve chronic disease outcomes. It discusses how the program started, what happens during a patient visit, what CUC learned while launching the program, and plans for the future. Data showing the increase in the percentage of patients with diabetes who received care as well as of those who had a current A1c test are included.

Contact: National Network for Oral Health Access, 181 East 56th Avenue, Suite 410, Denver, CO 80216, Telephone: (303) 957-0635 E-mail: [email protected] Web Site: http://www.nnoha.org Available from the website.

Keywords: Access to health care, Chronic illnesses and disabilities, Diabetes mellitus, Oral health, Service integration, State programs, Texas

    Next Page »

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.