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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 (41 total).

Davidson L. n.d.. Demonstration Projects for Pediatric EMS Systems Components: [Final report]. Mobile, AL: University of South Alabama College of Medicine, 104 pp.

Annotation: The overall goal of the this project was to demonstrate effective models for the necessary components of an emergency medical services for children (EMSC) system and the integration of those components into currently operating adult-oriented systems. The project has outlined the six major components of an EMSC system: (l) System description, (2) prevention, (3) education, (4) standards of care, (5) quality assurance, and (6) research and development. The project comprised seven subprojects whose activities included educating the public, the prehospital care provider, and the rural physician about the assessment and management of pediatric emergencies; comparing the efficacy of ground versus air transport; defining the degree of psychological impairment caused by head injury; identifying the rehabilitation facilities available locally, regionally, and nationally; and increasing compliance with safety belt/child restraint legislation. [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 PB92-103332.

Keywords: Cost-Benefit Analysis, Data Collection, Emergency Medical Services, Emergency medical technicians, Facilities For, First Aid, Head Injuries, Health Professionals, Paramedics, Rehabilitation, Seat Belts/Restraints for Children

Levinson J. n.d.. Regional Comprehensive Care Program for Juvenile Connective Tissue Diseases [Final report]. Cinicinnati, OH: Children's Hospital Medical Center, Special Treatment Center for Juvenile Arthritis, 48 pp.

Annotation: This project provided comprehensive services (including early diagnosis, continuity of treatment, and case management by an interdisciplinary team) to juveniles with connective tissues diseases. Activities included providing services in forty-eight counties in Indiana, Kentucky, Ohio, and West Virginia; collecting clinical, treatment, and demographic data on all patients; and developing regional networks of health professionals. [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 PB93-161883.

Keywords: Adolescents, Appalachians, Chronically Ill, Connective Tissue Diseases, Data Collection, Juvenile Rheumatoid Arthritis, Patient Education, Rehabilitation, Rheumatic Diseases, Systemic Lupus Erythematosus

Diaz de Ortiz M. n.d.. Caguas Crippled Children Service Network [Final report]. Caguas, PR: Caguas Regional Hospital, 33 pp.

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]

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 PB93-198901.

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

University of Kentucky Human Development Institute. 2019. Glossary of disability terms and acronyms. [Lexington, KY?]: University of Kentucky Human Development Institute, 10 pp.

Roux AM, Anderson JE, Shattuck PT. 2016. National autism indicators report: Vocational rehabilitation. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 78 pp.

Annotation: This report gives national and state data on the use of vocational rehabilitation services to support employment of people with autism. It spotlights use of job placement services and on-the-job supports, and outcomes of students and Social Security Income (SSI) recipients. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Children with special health care needs, Statistics, Transition to independent living, Vocational rehabilitation

Giovannelli J, Lucia KW, Corlette S. 2014. Implementing the Affordable Care Act: Revisiting the ACA's essential health benefits requirements. New York, NY: Commonwealth Fund, 10 pp.

Annotation: This brief examines how states have exercised their options under the initial federal essential health benefits (EHB) framework. Topics include the Affordable Care Act's 10 EHB categories and state approaches to selection of an EHB benchmark plan, regulation of EHB substitution, defining coverage for habilitative services, and coverage for pediatric dental services.

Contact: Commonwealth Fund, One East 75th Street, New York, NY 10021, Telephone: (212) 606-3800 Fax: (212) 606-3500 E-mail: [email protected] Web Site: http://www.commonwealthfund.org Available from the website.

Keywords: Benchmarking, Dental care, Health care reform, Health insurance, Health services, Oral health, Patient Protection and Affordable Care Act, Pediatric care, Regulations, Rehabilitation, State programs

National Center for Injury Prevention and Control. 2009. CDC injury research agenda. Atlanta, GA: National Center for Injury Prevention and Control, 116 pp.

Annotation: This document describes the Centers for Disease Control and Prevention's research agenda, 2009-2018, which focuses on answering questions that will have a relatively rapid impact on how we prevent injuries and reduce their consequences. Topics include cross-cutting priorities for injury research, injury response; unintentional injury prevention at home and in the community, preventing injuries in sports, recreation, and exercise, (4) preventing transportation injuries; preventing child maltreatment, sexual violence and intimate partner violence, preventing suicidal behavior, and preventing youth violence.

Contact: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, 4770 Buford Highway, N.E., Mailstop F-63, Atlanta, GA 30341-3717, Telephone: (800) CDC-INFO Secondary Telephone: (888) 232-6348 Fax: (770) 488-4760 E-mail: [email protected] Web Site: http://www.cdc.gov/injury/index.html Available from the website.

Keywords: Adolescent behavior, Centers for Disease Control and Prevention, Child abuse, Communities, Disabilities, Domestic violence, Injuries, Injury prevention, Motor vehicle injuries, Recreational injuries, Rehabilitation, Research, Residential injuries, Sports injuries, Suicide prevention, Violence, Violence prevention

Leavitt R. 2009. Cultural competence: A lifelong journey to cultural proficiency. Thorofare, NJ: SLACK, 264 pp.

Annotation: This book represents an effort to facilitate the development of cultural competence and cultural proficiency among physical therapists. The book covers theory, practice, and professional development areas of study that have frequently been omitted from the traditional curriculum for rehabilitation professional students or continuing education for the practitioner. Chapters 1,2, and 3 address the domains of culture and cultural competence from a broad perspective. Chapter 4 identifies special considerations that need to be addressed when doing an ethnography of a client. Chapter 5 is devoted to understanding disability. Chapter 6 focuses on present-day circumstances of disparities in health status, health care, and physical therapy. Chapters 7 and 8 are about poverty and racism. Chapter 9 is about communication. Chapter 10 introduces the concept of service learning and explores the relationship between service learning and cultural competence. Chapter 11 discusses the social construct of disability. Chapter 2 provides specific strategies to enable individual physical therapists and the profession of physical therapy to work toward increased cultural competence.

Contact: Slack, Incorporated, 6900 Grove Road, Thorofare, NJ 08086, Telephone: (856) 848-1000 Fax: (856) 853-5991 Web Site: http://www.slackbooks.com Available in libraries. Document Number: ISBN 978-1-55642-876-0.

Keywords: Chronic illnesses and disabilities, Communication, Cultural competence, Health, Health care disparities, Health status disparities, Physical therapists, Physical therapy, Physical therapy education, Poverty, Racism, Rehabilitation

Johnson, Bassin, and Shaw. 2004. What is substance abuse treatment?: A booklet for families. Rockville, MD: U.S. Center for Substance Abuse Treatment, 31 pp.

Annotation: This booklet provides basic information, for family members and friends of patients addicted to drugs or alcohol, about substance abuse treatment and early recovery. It discusses what to expect when a family member or friend enters treatment, what us happening in the early stages of treatment, treatment planning and care, outpatient and inpatient programs, continuing care and relapse issues, and the impacts on family members or other close caregivers. One section is written especially for young people and their issues of parent substance abuse and the possible need for counseling. Also provided are a glossary and a resource section including government information sources and organizations. The publication is also available in Spanish.

Contact: U.S. Center for Substance Abuse Treatment, Substance Abuse and Mental Health Services Administration, Rockwall II Building, One Choke Cherry Road , Rockville, MD 20857, Telephone: (240) 276-1660 Secondary Telephone: Fax: E-mail: Available at no charge; also available from the website. Document Number: DHHS (SMA) 04-3955.

Keywords: Alcohol abuse, Alcoholism, Drug addiction, Family support, Patient care management, Public awareness materials, Rehabilitation, Resource materials, Spanish language materials, Substance abuse treatment, Substance abusers, Substance use behavior

Washington State Department of Health, Adolescent Health Transition Project. 2003. Working together for successful transition: Washington State adolescent transition resource notebook. Olympia, WA: Adolescent Health Transition Project, Washington State Department of Health, ca. 350 pp.

Annotation: This notebook is a resource on transition from adolescence to young adulthood for young adults with special health care needs and disabilities.The notebook is geared toward families, students, school personnel, community agency workers, health professionals, and other groups working with adolescents and young adults in Washington State. The notebook is organized into the following sections: (1) transition overview, (2) the student, (3) school, (4) post-secondary education, (5) work, volunteering, community participation, (6) division of vocational rehabilitation, (7) community resources, (8) recreation, (9) legal matters, (10) Division of Developmental Disabilities, (11) Supplemental Security Income, (12) health, and (13) transition stories. The notebook contains one appendix that includes information on multicultural and translated resources, acronyms and definition, health insurance terms and definitions, sample forms, information on educational resources, and a transition guide for Washington State.

Contact: Washington State Department of Health, Office of Maternal and Child Health, Children with Special Health Care Needs Program, P.O. Box 47835, Olympia, WA 98504-7835, Telephone: (360) 236-3571 E-mail: [email protected] Available from the website.

Keywords: Adolescents with special health care needs, Community participation, Developmental disabilities, Education, Health, Legislation, Recreation, School to work transition, Schools, Students, Supplemental security income, Transition to independent living, Vocational rehabilitation, Volunteers, Washington, Young adults, Youth

Schoenbrodt L, ed. 2001. Children with traumatic brain injury: A parent's guide. Bethesda, MD: Woodbine House, 482 pp.

Annotation: This book is written for parents of children who have suffered traumatic brain injury (TBI) to help them navigate the medical and educational systems and to find additional information and support for the family and the child. Chapter topics include defining TBI; rehabilitation and medical concerns; coping as a family; helping the child adjust; how TBI affects learning and thinking, speech and language, and behavior; strategies for managing behavior; the educational needs of children with TBI; and legal issues for families. An appendix provides scales used to assess patients with TBI. The book also contains a glossary, reading list, resource guide, notes, and an index.

Contact: Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817, Telephone: (800) 843-7323 E-mail: [email protected] Web Site: http://www.woodbinehouse.com Available in libraries. Document Number: ISBN 0-933149-99-9.

Keywords: Brain injuries, Child development, Child health, Coping, Disability assessment, Family support, Legal issues, Rehabilitation, Trauma

Schulzinger R. 2000. State Title V rehabilitation services: The federal law and how states implement it. Gainesville, FL: Institute for Child Health Policy, Center for Policy and Partnerships, 20 pp. (Healthy and Ready to Work policy brief)

National Institute of Child Health and Human Development. 1999. Report of the NIH Consensus Development Conference on the Rehabilitation of Persons With Traumatic Brain Injury. Rockville, MD: National Institute of Child Health and Human Development, 530 pp.

Annotation: This consensus development statement is meant to inform the biomedical research and clinical practice communities of the results of the National Institutes of Health Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury, held October 26-28, 1998 in Bethesda, Maryland. The statement provides information on effective rehabilitation measures for persons who have suffered a traumatic brain injury as well as conclusions and recommendations of the consensus panel. Additional topics include epidemiology of brain injury, hospitalization trends, family consequences, the economics of rehabilitation, research in cognitive rehabilitation, models of care, access to services, and ethical considerations in traumatic brain injury research. Report sections include the consensus statement, a list of consensus development panel, speakers, planning committee, the conference abstracts, and the consensus panel report. Also included is a listing of acronyms/abbreviations and three appendices containing three studies on traumatic brain injury.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, Information Resource Center, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: Fax: (866) 760-5947 E-mail: [email protected] Web Site: http://www.nichd.nih.gov Available in libraries. Document Number: NIH Pub. No. 96-3823.

Keywords: Access to health care, Brain injuries, Conferences, Models, Rehabilitation, Trauma

U.S. Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs. 1998. Implementing Title V CSHCN programs: A resource manual for state programs. [Rockville, MD]: U.S. Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, ca. 200 pp.

Annotation: This resource manual for state Title V Children with Special Health Needs (CSHCN) Programs contains materials that support the efforts of program leadership to carry out their legislated responsibilities. These materials include four annotated bibliographies of key documents and resources; a brief legislative history of Title V of the Society Security Act and Maternal and Child Health Services Block Grant Program; a discussion of the MCH Block Grant Performance Measures within the context of both the national agenda for CSHCN and the core CSHCN Program functions; an overview of the Division's current programmatic, product development, and technical assistance activities; and selected resource materials from other related initiatives. The annotated bibliographies are organized under four topical areas: rehabilitation services for Social Security beneficiaries, providing services to CSHCN, development of community systems of services, and family centered care. These bibliographies include citations to policy briefs, briefing books, federal agency documents, project reports, training materials, legislation, journal articles, and books. Each listing provides information about the document, including a brief summary and where to obtain it. [Funded by the Maternal and Child Health Bureau]

Contact: Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5130 , Gainesville, FL 32608, Telephone: (352) 265-7220 Secondary Telephone: Fax: (352) 265-7221 Contact E-mail: [email protected] Web Site: https://ichp.ufl.edu Available from the website.

Keywords: Bibliographies, Block grants, Children with special health care needs, Community programs, Family centered care, History, Legislation, MCH services, Manuals, Maternal and Child Health Bureau, Rehabilitation programs, Social Security Act, Special health care services, State CSHCN programs, Title V, Title V programs

Brooks CS, Rice KF. 1997. Families in recovery: Coming full circle. Baltimore, MD: Paul H. Brookes Publishing Company, 333 p.

Annotation: This book discusses the effects of substance abuse on the family of the chemically dependent person and how it affects the family's functioning. It considers the incidence of substance abuse, how addictions affects child development, and why the predisposition to substance abuse can become cyclical. It also examines special topics such as exposure to substances in utero and HIV and the effects of violence and trauma. It then introduces a family-centered treatment model that helps substance abusers recover from their addiction.

Contact: Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624, Telephone: (800) 638-3775 Secondary Telephone: (410) 337-9580 Fax: (410) 337-8539 E-mail: [email protected] Web Site: http://www.brookespublishing.com Available in libraries. Document Number: ISBN 1-55766-264-9.

Keywords: Children, Children of alcoholics, Drug use during pregnancy, Family centered care, Family relations, Recovering addicts, Recovering alcoholics, Rehabilitation, Substance abuse treatment programs, Substance abusing mothers

Camp JM, Finkelstein N. 1995. Fostering effective parenting skills and healthy child development within residential substance abuse treatment settings. Cambridge, MA: Coalition on Addiction, Pregnancy and Parenting, 173 pp.

Annotation: This report presents the findings on the effects of parent training programs in two Massachusetts urban residential treatment centers for substance-abusing pregnant women. The programs included training and multiple services for the women and their infants while they were in treatment and after their discharge. The report describes the women, changes in their parenting skills and self-esteem, their assessment of the program, the infant's development, follow-up data on a sample of the women, factors that predict program retention, and implications of the findings. The program is one of a group focusing on pregnant and postpartum women and infants (PPWI). [Funded by the Maternal and Child Health Bureau and the Center for Substance Abuse Prevention]

Contact: Massachusetts Department of Public Health, Bureau of Substance Abuse Services, 250 Washington Street, Boston, MA 02108 , Telephone: (800) 327-5050 Secondary Telephone: (617) 536-5872 Web Site: http://www.mass.gov/?pageID=eohhs2terminal&L=5&L0=Home&L1=Government&L2=Departments+and+Divisions&L3=Department+of+Public+Health&L4=Programs+and+Services+K+-+S&sid=Eeohhs2&b=terminalcontent&f=dph_substance_abuse_g_about&csid=Eeohhs2 Available in libraries.

Keywords: Children of alcoholics, Children with special health care needs, Detoxification, Drug affected children, High risk children, Massachusetts, Parent education, Parent support services, Parenting, Rehabilitation, Residential programs, Substance abusing pregnant women

Roberts N, Schoeller K, Shapland C, Goldberg P, Goldberg M. 1993. Living your own life: A handbook for teenagers by young people and adults with chronic illness or disabilities. Minneapolis, MN: PACER Center, 91 pp.

Annotation: This handbook provides adolescents and young adults who have chronic conditions or disabilities information on how they can make the transition to independent living; it shares the personal narratives of those who have special health needs. Topics covered include learning self assurance, dealing with feelings about health and medicine, making plans based upon an honest assessment of the special health condition, using communication skills, advocating for civil rights, responding to the need for love and affection, and pursuing opportunities in education and employment. Appendices list federal, state, and local resources that can provide assistance to adolescents, young adults, and their families. [Funded by the Maternal and Child Health Bureau]

Keywords: Adolescents with special health care needs, Advocacy, Chronic illnesses and disabilities, Civil rights, Education, Emotional development, Employment, Federal programs, Life skills, Local programs, Personal narratives, Psychosexual development, Resource materials, Self esteem, Special health care needs, State programs, Transition to independent living, Vocational rehabilitation, Young adults

Bean B, Bennett S. 1993. The me nobody knows: A guide for teen survivors. New York, NY: Lexington Books, 145 pp.

Annotation: This book provides sexually abused adolescents a guide for recovery. It covers topics such as the effects of being abused, considers growing up in a dysfunctional family, covers being abused by family members and by a person outside the family, provides information about abusers, and reviews issues related to sexuality. It suggests strategies to help the adolescent heal which include: ways to move from surviving to thriving, methods of remembering the event and communicating with others, techniques for developing self-esteem and healthy relationships, and suggestions for confronting the offender and forgiving them. The book includes a chapter for parents, and a list of organizations and resources that can provide more help and information.

Keywords: Adolescents, Mental health, Rehabilitation, Sexual abuse

Bussone L, comp. 1993. Alaska EMS for Children Project: [Final report]. Juneau, AK: Alaska Department of Health and Social Services, Emergency Medical Services Section, 50 pp.

Annotation: The Alaska Emergency Medical Services for Children (EMSC) project addresses problems associated with pediatric emergencies in Alaska through interventions at various stages in disease and injury affecting children, and the system that is designed to combat these problems. The overall goal of the project is to improve the emergency medical care system in Alaska and its ability to treat and rehabilitate Alaska's acutely ill and injured children, as well as to prevent childhood injuries and deaths. The project addresses problems in the Emergency Medical Services system at all levels—prehospital, hospital, and rehabilitative services. [Funded by the Maternal and Child Health Bureau]

Keywords: Education of health professionals, Emergency medical services for children, Emergency medical technicians, Emergency room personnel, Rehabilitation, Rural populations, Training, Trauma

Children's Hospital, Boston, Project School Care. 1992. Working toward a balance in our lives: A booklet for families of children with disabilities and special health care needs. Boston, MA: Children's Hospital, Project School Care, 90 pp.

Annotation: This booklet is designed to help parents of children with special health needs deal with their children's experiences in the hospital, at home, and at school. It was developed by a group of parents and staff of Project School Care, a program at Children's Hospital, Boston. Project School Care was established to foster educational opportunities for children with special health needs, particularly those assisted by medical technology. The booklet discusses the hospital experience, common questions after hospitalization, home care, home nursing, respite care, financing health care, equipment, education, vocational training and planning for adulthood, recreation and travel, and record keeping. Appendices include a list of resource organizations, suggested readings, and a glossary. The booklet was supported by grants from the U.S. Maternal and Child Health Bureau and the Charles A. Lindbergh Fund. [Funded by the Maternal and Child Health Bureau]

Keywords: Adolescents with special health care needs, Children with special health care needs, Education, Home care, Nursing, Parenting, Respite care, School health services, Vocational rehabilitation

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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.