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Strengthen the Evidence for Maternal and Child Health Programs

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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 (93 total).

Wittenmyer J. n.d.. Amelioration of Health Problems of Children with Parents with Mental Retardation: [Final report]. Madison, WI: Wisconsin Council on Developmental Disabilities, 51 pp.

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, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov 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

National Center for Social Statistics. n.d.. Statistical summary of patients served in mental retardation clinics, fiscal year 1969. [Washington, DC]: U.S. Department of Health, Education, and Welfare, Social and Rehabilitation Service, National Center for Social Statistics, 7 items. (NCSS report MR-1 (FY 69))

Annotation: This document provides data on services rendered to mentally retarded children in fiscal year 1969 by clinics supported in whole or in part by federal grants under Title V of the Social Security Act. The library also holds instructions and forms for reporting similar data in other years (1956, 1960, and 1974).

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website. Document Number: NCSS Report MR-1 (FY 69).

Keywords: Children, Clinics, Mental retardation, State programs, Statistics, Title V programs

Special Olympics. 2014-. Project UNIFY toolkit. Washington, DC: Special Olympics,

Annotation: This toolkit provides resources to help schools implement Project UNIFY, an initiative that focuses on social inclusion that brings youth with and without intellectual disabilities together through sports and related activities. The resources describe Project UNIFY's vision, its major components, how to get started, implementation models, the connection to equal education and inclusion, evaluation reports, and the project's impact.

Contact: Special Olympics, 1133 19th Street, N.W., Washington, DC 20036-3604, Telephone: (202) 628-3630 Secondary Telephone: (800) 700-8585 Fax: (202) 824-0200 E-mail: info@specialolympics.org Web Site: http://www.specialolympics.org Available from the website.

Keywords: Physical fitness, Children with special health care needs, Chronic illnesses and disabilities, Developmental disabilities, Inclusive schools, Information services, Mental retardation, School health programs, Sports

Waldman M, Nicholson S, Adilov N. 2012. Positive and negative mental health consequences of early childhood television watching. Cambridge, MA: National Bureau of Economic Research, 45 pp. (NBER working paper series no. 17786)

Annotation: This paper examines the relationship between early childhood television watching and two health outcomes – autism and mental retardation. Using cross-sectional data from 1972 until 1992 on county-level autism and mental retardation rates, combined with county-level children's cable-television subscription rates, the authors' aimed tp eliminate questions concerning reverse causation while investigating the effects of early childhood television viewing on the prevalence of mental retardation and autism. Tables compare children's television viewing by race, family structure, income, and other variables, while figures compare rates of autism and mental retardation according to race, county demographics, and cable subscription rates.

Contact: National Bureau of Economic Research, 1050 Massachusetts Avenue, Cambridge, MA 02138-5398, Telephone: (617) 868-3900 Fax: (617) 868-2742 E-mail: info@nber.org Web Site: http://www.nber.org Available from the website after free registration.

Keywords: Autism, Data analysis, Early childhood development, Mental retardation, Studies, Television

March of Dimes Birth Defects Foundation. 2007. PKU. White Plains, NY: March of Dimes , (Preconception risk reduction)

Annotation: This web site provides information about phenylketonuria (PKU). It answers the following questions: (1) what is PKU?, (2) how does PKU affect a child?, (3) who gets PKU?, (4) are all infants tested for PKU?, (5) how is the test done?, (6) can PKU symptoms be prevented?, (7) what is maternal PKU? (8) what is new in PKU research?, and (9) are there additional sources of information? References are included.

Contact: March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, Telephone: (914) 997-4488 Secondary Telephone: Web Site: http://www.marchofdimes.com Available from the website.

Keywords: Child health, Infant health, Maternal phenylketonuria, Mental retardation, Phenylketonuria, Prevention, Research, Treatment, Women's health

U.S. Public Health Service, Office of the Surgeon General. 2002. Closing the gap: A national blueprint to improve the health of persons with mental retardation—Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Rockville, MD: U.S. Public Health Service, 53 pp.

Annotation: This conference report identifies priority goals and action steps set forth by the mental retardation (MR) community at the national conference held December 5–6, 2001, in Washington, DC. The goals and action steps are described as follows: (1) integrate health promotion into community environments of individuals with MR; (2) increase knowledge and understanding of health and MR, ensuring that knowledge is made practical and easy to use; (3) improve the quality of health care for individuals with MR; (4) train health professionals in the care of adults and children with MR; (5) ensure that health care financing produces good health outcomes for adults and children with MR; and (6) increase sources of health care services for children, adolescents, and adults with MR, ensuring that they can easily access services. The report also includes six appendices covering the conference plenary sessions, a list of participants, a list of potential partners, a description of programs and strategies to close the health disparities gap for those with MR, a summary of the Surgeon General's listening session, and a list of speakers at the listening session. Appendix D, Section C describes oral health programs.

Contact: U.S. Government Publishing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (202) 512-1800 Secondary Telephone: (866) 512-1800 Fax: (202) 512-2104 E-mail: contactcenter@gpo.gov Web Site: http://www.gpo.gov Available from the website.

Keywords: Access to health care, Adolescents, Adults, Children, Conferences, Federal initiatives, Health care delivery, Health care financing, Health promotion, Mental retardation, Oral health, Program descriptions, Quality assurance, Special health care needs, Special health care services

Braddock D, Hemp R, Rizzolo MC, Parish S, Pomeranz A. 2002. The state of the states in developmental disabilities: 2002 study summary. Washington, DC: American Association on Mental Retardation, 140 [i.e., 54] pp.

Annotation: This title, a separately published chapter from a longer report, presents the results of the seventh State of the States in Developmental Disabilities study of financing and programming trends in the United States. The chapter focuses on describing the structure of residential and community services in the states and on identifying trends in the financing of institutional and community services and individual and family support. The chapter concludes with a discussion of issues that will impact the future of provisions for mental retardation and developmental disability services in the states.

Contact: The American Association on Intellectual and Developmental Disabilities, 501 Third Street, N.W., Washington, DC 20001, Telephone: (202) 387-1968 Secondary Telephone: (800) 424-3688 Fax: (202) 387-2193 E-mail: dcroser@aaidd.org Web Site: http://www.aamr.org Available from the website.

Keywords: Community based services, Developmental disabilities, Family support, Financing, Mental retardation, Residential programs, State programs, Trends

Special Olympics. 2001. Promoting health for individuals with mental retardation: A critical journey barely begun. Washington, DC: Special Olympics, 24 pp.

Annotation: This report discusses the health needs of people with mental retardation (MR) and makes recommendations for addressing those needs. The report also describes the Special Olympics Healthy Athletes program, which provides health assessment, health services, referral services, and health screening for Special Olympics athletes. It discusses oral health, vision, hearing, and obesity screening, as well as training for health professionals who serve people with MR.

Contact: Special Olympics, 1133 19th Street, N.W., Washington, DC 20036-3604, Telephone: (202) 628-3630 Secondary Telephone: (800) 700-8585 Fax: (202) 824-0200 E-mail: info@specialolympics.org Web Site: http://www.specialolympics.org Available from the website.

Keywords: Health promotion, Hearing screening, Mental retardation, Oral health, Physical activity, Screening, Sports, Vision screening

Hutchins VL. 2001. Maternal and child health at the millennium: Looking back, moving forward. Rockville, MD: U.S. Maternal and Child Health Bureau, 62 pp.

Annotation: This publication provides an overview of the federal Maternal and Child Health (MCH) program's evolution in consultation, technical assistance, policy development and dissemination, and data collection and analysis, from the establishment of the Children's Bureau in 1912 to the present. The publication uses four selected areas—newborn screening, mental retardation, heart disease, and school health/health of school age children—to illustrate how the MCH program development principles have incorporated scientific and technological advances into promoting the health of the nation's children and families. The publication discusses the problems that the MCH program will face in the future, including unresolved problems from the 20th century and new problems. References are included in the document. [Funded by the Maternal and Child Health Bureau]

Contact: National Maternal and Child Oral Health Resource Center, Telephone: (202) 784-9771 E-mail: OHRCinfo@georgetown.edu Web Site: https://www.mchoralhealth.org Available from the website.

Keywords: Adolescents, Child health, Children, Children's Bureau, Families, Fathers, Health promotion, Healthy People 2010, Heart diseases, History, Infants, MCH programs, Maternal and Child Health Bureau, Mental retardation, Neonatal screening, Parents, Pregnant women, Program development, School age children, School health, Social Security Act, Title V, Title V programs

Southern Association of Institutional Dentists. 2001. Modules [self study course]. [no place]: Southern Association of Institutional Dentists,

Annotation: This set of 15 modules provides information to help oral health professionals care for individuals with developmental disabilities, mental retardation (MR), and mental illness. Each module contains a brief review of the purpose and learning objectives, an introduction, and references. Topics include reviews of MR and other conditions such as Down syndrome, cerebral palsy, maladaptive behaviors, genetic syndromes, and mental illness; the use of dental sedation, immobilization and positioning devices, and general anesthesia; clinical concerns in dental care; treatment planning for the severely disabled and the impact on prosthetic, restorative, and surgical services; the provision of services to disabled individuals residing in the community; administrative issues in the practice of dentistry in the MR or mental health (MH) institutional setting; and a review of research needs and opportunities in MH/MR facilities.

Contact: Special Care Advocates in Dentistry, 400 Olde Smithfield Road, Goldsboro, NC 27530, Web Site: http://saiddent.com Available from the website.

Keywords: Cerebral palsy, Dental care, Dentistry, Developmental disabilities, Distance education, Down syndrome, Mental retardation, Oral health, Patient care management, Resources for professionals, Special health care needs, Training materials

Jenkins E. 2000. Improved Prenatal Detection of the Fragile X Mutation: [Final report]. Staten Island, NY: Research Foundation for Mental Hygiene, 39 pp.

Annotation: The fragile X syndrome, the most prevalent inherited form of mental retardation, is preventable by prenatal testing. Prenatal diagnosis is not yet widely available because the testing is technically difficult and is not 100 percent reliable. The goal of this project was to develop a more reliable prenatal test. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB2000-106930.

Keywords: Fragile X Syndrome, MCH Research, Mental Retardation, Pregnant Women, Pregnant women, Prenatal Diagnosis, Research

Ireys HT, Wehr E, Cooke RE. 1999. Defining medical necessity: Strategies for promoting access to quality care for persons with developmental disabilities, mental retardation, and other special health care needs. Arlington, VA: National Center for Education in Maternal and Child Health, 34 pp., exec. summ. (4 pp.).

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]

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

Nehring WM. 1999. A history of nursing in the field of mental retardation and developmental disabilities. Washington, DC: American Association on Mental Retardation, 205 pp.

Annotation: This book focuses primarily on the history of nursing in mental retardation (MR) since the late 1980s. The book includes the following chapters: (1) early care, terminology, and organized education: 1800-1899; (2) eugenics, community service, and the growth of nursing education: 1900-1929; (3) growth of nursing in institutional and community settings: 1930-1959, (4) federal support for MR and nursing education: 1960-1969; (5) MR in a new light: 1970-1979; (6) setting the standard for education, practice, and research: 1980 forward, and (7) the changing role of nursing in MR and developmental disabilities (DD) in the 21st century. The book includes five appendices: (1) a parallel look at important events in history; (2) Colorado State Home and Training School for Mental Defectives; (3) texts, guides, and pamphlets on MR-DD written by nurses; (4) significant legislation related to MR-DD since 1960, and (5) chronological list of nursing dissertations on topic related to MR-DD. References and legislative references are included.

Contact: The American Association on Intellectual and Developmental Disabilities, 501 Third Street, N.W., Washington, DC 20001, Telephone: (202) 387-1968 Secondary Telephone: (800) 424-3688 Fax: (202) 387-2193 E-mail: dcroser@aaidd.org Web Site: http://www.aamr.org Available in libraries. Document Number: ISBN 0-940898-68-3.

Keywords: Developmental disabilities, History, Legislation, Mental retardation, Nurses, Nursing, Nursing education, Research

U.S. Social Security Administration. 1997. Social security: Review of SSA's implementation of new SSI childhood disability legislation. Baltimore, MD: U.S. Social Security Administration, 65 pp.

Annotation: This review of Supplemental Security Income (SSI) eligibility legislation for disabled children defines disability in children, and discusses eligibility review and implementation of the new legislation. Some corrective actions are recommended to ensure that every child receives a fair assessment. The three specific areas of concern identified were: cessation of eligibility of children classified as having mental retardation, quality of case processing, and appeals and requests for benefit continuation during appeal.

Contact: U.S. Social Security Administration, 6401 Security Boulevard, Baltimore, MD 21235, Telephone: (800) 772-1213 Secondary Telephone: (800) 325-0778 Contact Phone: (410) 965-4005 Web Site: http://www.ssa.gov Price unknown. Document Number: DHHS (SSA) 64-070.

Keywords: Children with developmental disabilities, Children with special health care needs, Disability evaluation, Legislation, Mental retardation, Supplemental security income

Fifield M, Fifield B. 1995. The evolution of university affiliated programs for individuals with developmental disabilities: Changing expectations and practices. Silver Spring, MD: American Association of University Affiliated Programs, ca. 120 pp.

Annotation: This report is a historical overview of the evolution of the network of University Affiliated Programs for Individuals with Developmental Disabilities. Sections include background, a call to action outlining legislation and program proposals, an overview of the evolution of UAPs, themes in UAP evolution, issues in the future of UAPs, a summary, and references. Also included are numerous appendices about UAPs and the periods in which they evolved. Throughout the report, tables are provided with information on UAP recommendations, characteristics of the facilities and directors, changes to UAPs, and the involvement of the UAP network in consumer empowerment activities and American with Disabilities Act (ADA) implementation activities.

Contact: Association of University Centers on Disabilities, 1010 Wayne Avenue, Suite 1000, Silver Spring, MD 20910, Telephone: (301) 588-8252 Fax: (301) 588-2842 E-mail: aucdinfo@aucd.org Web Site: http://www.aucd.org

Keywords: Developmental disabilities, History, Mental retardation, Professional training, University affiliated programs

Baumeister A, Kupstas FD, Woodley-Zanthos P, Klindworth LM. 1993. The new morbidity: Recommendations for action and an updated guide to state planning for the prevention of mental retardation and related disabilities associated with socioeconomic conditions. Washington, DC: President's Committee on Mental Retardation, 362 pp.

Annotation: This report, updated and expanded from a 1988 report with a similar title, discusses health problems in America that are related to mental retardation and associated with unfavorable socioeconomic conditions (the "new morbidity"). It suggests areas for state prevention planning, including prenatal care, low birthweight, adolescent pregnancy, environmental hazards/infections, nutrition and early intervention. It also reviews recent legislative, judicial, and administrative activities in these areas. There is a 35-page bibliography, and appendices include a table showing the status of each state's efforts to screen all newborns for various congenital conditions, a list of state prevention planning offices, and an organizational chart of the Department of Health and Human Services.

Contact: President's Committee for People with Intellectual Disabilities, Administration for Children and Families, 370 L'Enfant Promenade, S.W, Washington, DC 20201-20447, Telephone: (202) 619-0634 Contact Phone: (202) 619-3636 Fax: (202) 205-9519 Web Site: http://www.acl.gov/Programs/AIDD/Programs/PCPID/index.aspx Available at no charge; also available from the web site.

Keywords: Child health, Maternal health, Mental retardation, Prevention programs, Socioeconomic factors, State programs

Waisbren S. 1993. Study of Psychosocial Factors in Maternal Phenylketonuria [Final report]. Boston, MA: Boston Children's Hospital, 43 pp.

Annotation: Women with phenylketonuria (PKU) are at risk for bearing children with mental retardation and/or physical disabilities. Dietary treatment during pregnancy, if initiated prior to conception, offers protection to the fetus. Many women seek medical attention after they are pregnant, however. The investigators in this study posited that psychosocial factors determine when a young woman with PKU is likely to plan her pregnancy and comply with medical recommendations for treatment. This 3-year prospective longitudinal study tested these assumptions using a stage model of decision making. The findings clearly indicate that specific psychosocial factors predict adherence to medical recommendations in maternal PKU. The two most important factors were social support and positive attitudes toward treatment. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB95-209144.

Keywords: Birth Defects, Diabetes, High risk groups, High risk pregnancy, Mental Retardation, Nutrition, Phenylketonuria (PKU), Pregnant Women, Women

Berkus CW, Dodd M. 1992. Charlsie's chuckle. Bethesda, MD: Woodbine House, 32 pp.

Annotation: This book for children relates the story of a child with Down syndrome and his interactions with his family and other members of the community. A brief essay at the end of the book by the President of the National Down Syndrome Congress provides facts about the syndrome and indicates that children with the syndrome deserve to be treated with dignity and should be afforded the same rights as other children.

Contact: Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817, Telephone: (800) 843-7323 E-mail: info@woodbinehouse.com Web Site: http://www.woodbinehouse.com Available in libraries. Document Number: ISBN 0-933149-50-6.

Keywords: Children with special health care needs, Down syndrome, Family relations, Materials for children, Mental retardation

Buck PS. 1992. The child who never grew. (2nd ed.). Bethesda, MD: Woodbine House, 107 pp.

Annotation: This book presents Pearl S. Buck's account of her relationship with her daughter, Carol, who was mentally retarded. It provides insights to Buck's attempts to understand and care for her daughter and describes society's perceptions of mental retardation during the first half of the 20th century. The foreword by James A. Michener provides an historical context for Buck; and the afterword by one of Buck's adopted daughters, Janice C. Walsh, points out the current significance of her book for other parents.

Contact: Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817, Telephone: (800) 843-7323 E-mail: info@woodbinehouse.com Web Site: http://www.woodbinehouse.com $14.95. Document Number: ISBN 0-933149-49-2.

Keywords: Children with special health care needs, Family relations, Mental retardation, Parents, Personal narratives

U.S. Department of Health and Human Services, Administration for Children and Families, President's Committee on Mental Retardation. 1991. Summit on the national effort to prevent mental retardation and related disabilities. Washington, DC: U.S. Department of Health and Human Services, President's Committee on Mental Retardation, 244 pp.

Annotation: This document provides the proceedings of the 1991 Summit on the National Effort to Prevent Mental Retardation and Related Disabilities. Participants in the summit included federal agency staff, representatives of governors' offices and developmental disability planning councils, health officials, prevention planners, service providers, consumer advocates, educators, researchers, and legislators. Work groups addressed the following issues: comprehensive state planning, especially application of the new morbidity model and the role of government agencies in facilitating planning; strategies for addressing epidemiological needs; and practical approaches to the National Prevention Policy. The presentations of special interest are on the impact of substance abuse and teratogenic factors on child development and family options; Florida's movement from prevention planning to prevention program implementation; and the Iowa community-based, low birthweight prevention pilot project.

Contact: U.S. Administration for Children and Families, 370 L'Enfant Promenade, S.W., Washington, DC 20447, Telephone: (202) 401-9215 Secondary Telephone: (800) 422-4453 Web Site: http://www.acf.hhs.gov Available at no charge. Document Number: DHHS (ACF) 91-21045.

Keywords: Child health, Chronic illnesses and disabilities, Developmental disabilities, Infant health, Mental retardation, Prevention programs

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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. 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.