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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 (24 total).

San Diego State University, Mainstreaming Project. n.d.. Including all of us: Caring for children with special needs in early childhood settings—Manual for child care providers. San Diego, CA: San Diego State University, Mainstreaming Project, 218 pp.

Annotation: This manual was developed to accompany an 8-hour class. It introduces the concept of mainstreaming and relates it to the principles of early childhood education and best practice guidelines for caring for children with special needs. Module one includes sections on the importance of working with families, ethical issues, laws protecting children with special needs, typical vs. atypical development, how children learn, suggestions for working with parents are included, and diversity resources. Module two deals with motor development and concludes with a bibliography and references. Module three covers social-emotional development and behavioral issues. [Funded by the Maternal and Child Health Bureau]

Contact: San Diego State University, Mainstreaming Project, 6505 Alvarado Road, Suite 108, San Diego, CA 92120, Telephone: (619) 594-4373 Available in libraries.

Keywords: Americans With Disabilities Act, Child behavior, Child care, Child development, Children with special health care needs, Developmental disabilities, Ethics, Families, Learning, Legislation, Mainstreaming, Motor development, Parents, Psychosocial development, Special education

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

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, 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 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

UPMC Insurance Services Division. 2013. Perspectives on the Allegheny County Maternal and Child Health Care Collaborative. Pittsburgh, PA: UPMC Insurance Services Division, 30 pp.

Annotation: This report discusses the involvement of key partners and presents the personal stories of those central to the efforts of the Allegheny County Maternal and Child Health Care Collaborative to address parental depression and child development delay. The collaborative aims to improve health care services and delivery and outcomes for Medicaid-eligible mothers in Allegheny County, Pennsylvania, and their children. The report discusses the evolution of the collaborative and its phases, presents results, discusses transforming systems of community care and elements that make the project sustainable, and presents caregivers' perspectives. [Record in process]

Contact: UPMC Insurance Services Division, US Steel Tower, 600 Grant Street, Pittsburgh, PA 15219, Web Site: http://www.upmchealthplan.com Available from the website.

Keywords: Access to health care, Child development, Children with developmental disabilities, Collaboration, Community programs, Depression, Developmental disabilities, Families, Fathers, Health services, Interagency cooperation, Low income groups, Medicaid, Mental health, Mothers, Parents, Programs

National Council on Disability. 2012. Rocking the cradle: Ensuring the rights of parents with disabilities and their children. Washington, DC: National Council on Disability, 445 pp.

Annotation: This report analyzes how disability law and policy in the United States apply to parents with disabilities in the child welfare and family law systems. It provides a comprehensive review of the barriers and facilitators that people with intellectual, developmental, psychiatric, sensory, and/or physical disabilities experience when exercising their right to create and maintain families. It examines the pervasive and systemic discrimination against parents with disabilities and the disparate treatment that parents with disabilities and their children receive. Included are chapters that focus on parental disability and child welfare in the Native American community; custody and visitation in the family law system; and the lack of adequate adaptive services, equipment, and parental guidance in child welfare and family courts. The report also looks at support systems for parents with disabilities; promising practices to prevent the unnecessary removal and loss of children; and the need for legislation to ensure the rights of parents with disabilities and their families An examination of the impediments that prospective parents with disabilities encounter when adopting or accessing assisted reproductive technologies is also provided. The goal of this report is to advance understanding and promote the rights of parents with disabilities and their children.

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: ncd@ncd.gov Web Site: http://www.ncd.gov/ Available from the website.

Keywords: Adults, Analysis, Disabilities, Legislation, Parent rights, Parents with special health care needs, Policy analysis, Reports, Reproductive rights

Axley DL, Zendell AL. 2011. Sexuality across the lifespan for children and adolescents with developmental disabilities. (Rev. ed.). Tallahassee, FL: Florida Disabilities Development Council, 114 pp.

Annotation: This instructional manual is designed to help parents and caregivers assist individuals with intellectual or developmental disabilities in their explorations of self and sexuality. The manual presents hints for family members, discusses adapting for different learning styles, and offers tips. The manual also offers ideas for addressing the following topics: understanding the differences between males and females (grades K-5), changes in the body (grades 4-8), becoming an adult (grades 9-12), beginning social skills (grades K-8 and ongoing), advanced social skills (grades 6-12 as ready), dating, and sexual or physical abuse. A companion resource guide for educators is also available.It is available in English and Spanish.

Contact: Florida Disabilities Development Council, 124 Marriott Drive, Suite 203, Tallahassee, FL 32301-2981, Telephone: (850) 488-4180 Secondary Telephone: (850) 488-0956 Fax: (850) 922-6702 E-mail: fddc@fddc.org Web Site: http://www.fddc.org Available from the website.

Keywords: Adolescent sexuality, Adolescents with developmental disabilities, Adolescents with special health care needs, Children with developmental disabilities, Children with special health care needs, Dating, Families, Parents, Physical abuse, Sexual abuse, Sexuality, Social skills, Spanish language materials

Wisconsin Child Care Information Center. [2007]. Think big, start small: Together - children grow—Quality child care for children with special needs. [Madison, WI]: Wisconsin Child Care Information Center, 28 pp.

Annotation: This paper offers information about providing high-quality child care for children with special health care needs. Information is included about parents' and providers' concerns, what parents and providers need to know to get started, suggestions for talking to parents and providers, how to get child care off to a good start, strategies for success, resources, and what to do when a child care provider refuses to care for a child with a disability. Questions and answers about topics including the American with Disabilities Act are presented.

Contact: Wisconsin Child Care Information Center, Department of Public Instruction, PO Box 7841, Madison, WI 53707-7841, Telephone: (608) 224-5388 Secondary Telephone: (800) 362-7353 E-mail: ccic@dpi.state.wi.us Web Site: http://ccic.dcf.wi.gov/ Available from the website.

Keywords: Child care, Child care workers, Children with special health care needs, Communication, Disabilities, Legislation, Parents

California Childcare Health Program. 2005–. Fact sheets for families. [Oakland, CA]: California Childcare Health Program,

Annotation: These fact sheets for families cover a wide range of health and safety issues in child care. They are written in easy-to-understand language and are tailored to the perspectives of families. Topics include allergies, brain and behavioral health, healthy environment, illnesses and conditions, injury prevention, nutrition, medications, oral health, parents' health, poisoning, and children with special health care needs. The fact sheets are available in English and Spanish.

Contact: University of California, San Francisco School of Nursing, California Childcare Health Program, San Francisco, CA 94143, Telephone: (415) 476-4695 Web Site: http://www.ucsfchildcarehealth.org Available from the website.

Keywords: Allergies, Brain, Child behavior, Child health, Children with special health care needs, Chronic illnesses and disabilities, Consumer education materials, Environmental health, Families, Injury prevention, Nutrition, Oral health, Parents, Poisoning, Prescription drugs, Safety, Spanish language materials

Lombardi J, Bogle MM, eds. 2005. Beacon of hope: The promise of Early Head Start for America's youngest children. Washington, DC: Zero to Three Press, 224 pp.

Annotation: This book describes the Early Head Start Program -- how it came into being and what it offers young children and families. The book provides an overview of the program and discusses (1) how to improve the odds for infants and toddlers from families with low incomes, (2) the program's role in promoting good-quality child care for low-income families, (3) services for pregnant women, (4) nurturing early learning, (5) fathers, (6) adolescent parents, (7) infant mental health, (8) infants and toddlers with disabilities, and (9) Early Head Start and state partnerships. Each chapter includes references. Statistical information is presented in tables and figures throughout the book. The book includes one appendix: members of the advisory committee on services for families with infants and toddlers.

Contact: ZERO TO THREE: National Center for Infants, Toddlers and Families, 1255 23rd Street, N.W., Suite 350, Washington, DC 20037, Telephone: (202) 638-1144 Fax: (202) 638-0851 Web Site: http://www.zerotothree.org Available in libraries. Document Number: ISBN 0943657652.

Keywords: Adolescent parents, Child care, Children with special health care needs, Disabilities, Early Head Start, Early childhood education, Families, Fathers, Federal programs, Infants, Infants with special health care needs, Low income groups, Mental health, Pregnant women, Young children

PACER Center. 2003. Is your child a target of bullying?: Intervention strategies for parents of children with disabilities. Minneapolis, MN: PACER Center, 1 CD-ROM.

Annotation: This CD-ROM contains a curriculum for professionals to present to parents of children with disabilities who are the targets of bullying. Information is presented as PDF files or PowerPoint presentations. The curriculum includes information about (1) common responses to bullying, (2) the Individualized Education Program (IEP) and bullying, (3) intervention strategies for parents whose child is the target of bullying, (4) notifying school administrators about bullying, (5) recordkeeping and bullying, and (6) talking to children about bullying. A reading list for young readers is also included.

Contact: PACER Center , 8161 Normandale Boulevard, Bloomington, MN 55437-1044, Telephone: (952) 838-9000 Secondary Telephone: (952) 838-0190 Fax: (952) 838-0199 Web Site: http://www.pacer.org Available from the website.

Keywords: Bullying, Children with special health care needs, Disabilities, Individualized education programs, Intervention, Parents, Schools

National Early Childhood Technical Assistance Center with ERIC Clearinghouse on Disabilities and Gifted Education, ERIC/OSEP Special Project. 2001-2006. Compilation of projects addressing the early childhood provisions of IDEA . Chapel Hill, NC: National Early Childhood Technical Assistance Center, annual.

Annotation: This directory contains approximately 300 discretionary projects addressing the early childhood provisions of the Individuals with Disabilities Education Act. The directory was compiled from the following four volumes published by the ERIC/OSEP Special Project: (1) research, innovation, and evolution, (2) personnel preparation, (3) technical assistance, dissemination, parent training information, and state improvement, and (4) technology and media services. It was published annually from 2001 to 2006.

Contact: Early Childhood Technical Assistance Center, Campus Box 8040, UNC-CH, Chapel Hill, NC 27599-8040, Telephone: (919) 962-2001 Secondary Telephone: (919) 843-3269 Fax: 919.966.7463 E-mail: ectacenter@unc.edu Web Site: http://ectacenter.org/ Available from the website.

Keywords: Directories, Disabilities, Evaluation, Individuals with Disabilities Education Act, Information dissemination, Multimedia, Parents, Personnel, Research, Technical assistance, Technology, Training

Ireys H. 2000. Preventing Mental Health Problems in Ill Children: [Final report]. Baltimore, MD: Johns Hopkins University, 87 pp.

Annotation: More than two decades of epidemiological and clinic-based studies indicate that children with disabilities and chronic illnesses and their mothers are at high risk for secondary mental health problems. Despite this extensive body of work, few community-based interventions have been developed to reduce the risk of poor mental health outcomes, and few have been evaluated comprehensively. The goal of this study was to implement and evaluate a 15-month parent-professional intervention designed to reduce the risk of poor mental health outcomes for children with chronic illnesses and their parents. This study aimed to (1) assess the intervention's success in reaching specific objectives, (2) assess the intervention's impact on participants' mental health, and (3) document which children and parents benefit most from the intervention. [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 PB2001-101687.

Keywords: Children with Special Health care Needs, Chronic Illnesses and Disabilities, MCH Research, Mental Health, Parent Support Services, Parents, Parents, Research, School-age children, Self Esteem

Tannen N. 2000. The impact of parental illness on the child and family: Implications for system change. Washington, DC: National Technical Assistance Center for Children's Mental Health, 28 pp.

Annotation: This report describes a meeting of researchers, service providers, parents, and children to describe service delivery needs for families coping with parental illness, identify gaps in the literature, suggest research priorities, and promising interventions. The report also explores innovative partnerships to advance the shared goals of culturally competent, child centered, family focused care in a community-based service delivery from all child-serving sectors including environment mental health, substance abuse, health, education, child welfare, and juvenile justice. The appendices include participant biographies, the meeting agenda, and information and technical resources.

Contact: National Technical Assistance Center for Children's Mental Health, Georgetown University Center for Child and Human Development, 3300 Whitehaven Street, NW, Suite 3300, Washington, DC 20007, Telephone: (202) 687-5000 Fax: (202) 687-8899 E-mail: childrensmh@georgetown.edu Web Site: http://gucchdtacenter.georgetown.edu/index.html $6.00, plus shipping and handling.

Keywords: Child mental health, Chronic illnesses and disabilities, Collaboration, Family support, Health services delivery, Meetings, Mental health, Parents with special health care needs

Hauser-Cram P. 1999. The early intervention collaborative study. Arlington, VA: National Center for Education in Maternal and Child Health, 9 pp. (Research roundtable summary; no. 23)

Annotation: This report summarizes a seminar presentation about a Maternal and Child Health Bureau funded project on early intervention outcomes. The study investigated the extent to which characteristics of children, families, and the caregiving environment at discharge from early intervention predict children's functioning and parental well-being during the middle childhood period. The seminar presentation and discussion included what type of families early intervention should target, how intensive services should be, and whether services should be changed based on the findings of this study. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.ncemch.org Available from the website.

Keywords: Children with developmental disabilities, Children with special health care needs, Early intervention, Families, Family relations, MCH research, Outcome evaluation, Parents

Seltzer T. 1998. A new IDEA: A parent's guide to the changes in special education law for children with disabilities. Washington, DC: Judge David L. Bazelon Center for Mental Health Law, 22 pp.

Annotation: This publication is designed to help parents understand what the 1997 changes in the Individuals with Disabilities Education Act (IDEA) mean for students with emotional and behavioral problems. Tips are offered to help parents use the IDEA to protect children's right to an education. A list explains many of the abbreviations and special terms used in enforcing the law.

Contact: Judge David L. Bazelon Center for Mental Health Law, 1101 15th Street, N.W., Suite 1212, Washington, DC 20005, Telephone: (202) 467-5730 Secondary Telephone: (202) 467-4232 Fax: (202) 223-0409 E-mail: communications@bazelon.org Contact E-mail: pubs@bazelon.org Web Site: http://www.bazelon.org Available from the website.

Keywords: Children with developmental disabilities, Children with special health care needs, Education, Federal legislation, Individuals with Disabilities Education Act, Parents

University of Alabama at Birmingham, University of Florida, Tulane University, and Louisiana State University-Shreveport, Pediatric Pulmonary Centers. 1998. Advances in pediatric pulmonary care: Interdisciplinary approaches to asthma and home care of technology dependent children— Peabody Hotel, Memphis, Tennessee, May 7-8, 1998. Birmingham, AL: University of Alabama, Pediatric Pulmonary Center, ca. 200 pp.

Annotation: These conference proceedings discuss why interdisciplinary teams are needed, a parent's perspective of family centered care, health supervision for children with chronic illnesses, home care of pediatric pulmonary patients, guidelines for diagnosis and management of asthma, Healthy People 2010 Objectives for Children with Special Health Care Needs, asthma medications, guidelines for care of the child with a chronic tracheostomy, administering pediatric asthma medications, pediatric home ventilator care, home options for enteral support, identification and control of asthma triggers, the technology supported child in the community, promoting behavioral change and improving adherence, and smoking cessation. [Funded in part by the Maternal and Child Health Bureau]

Contact: University of Alabama at Birmingham, Department of Pediatrics, 1600 Seventh Avenue, South, Suite 620 ACC, Birmingham, AL 35233, Telephone: (205) 939-9100 Web Site: http://www.uab.edu/medicine/peds $15.00, limited quantity available.

Keywords: Asthma, Behavior modification, Children with special health care needs, Chronic illnesses and disabilities, Conferences, Drugs, Family centered care, Health supervision, Healthy People 2010, Home care, Interdisciplinary approach, Mechanical ventilators, Parents, Pediatric pulmonary care, Smoking cessation, Tracheostomy

Friedman JE, Magrab PR, McPherson MP. 1997. International perspectives: Building local systems of care for children with disabilities and their families. [Washington, DC]: Center for Child Health and Mental Health Policy, Georgetown University Child Development Center, 69 pp.

Annotation: This document reports on policies and practices relating to children with disabilities of countries attending the fourth international Congress on Serving Children with Disabilities in the Community held on May 30, May 31, and June 1, 1996, in Bethesda, Maryland. The report is divided into the following main sections: (1) development of national profiles, (2) developing policies and programs at the national level, (3) legislation and policy, (4) parent-professional partnerships, (5) planning and developing community-based systems of service, (5) decentralizing services for children with disabilities, (6) funding, (7) voluntary and private sector partnerships, and (8) conclusions: action agenda. The report includes two appendices: (1) the congress agenda and (2) a national profiles response form.

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.

Keywords: Child health, Children with developmental disabilities, Communities, Community based services, Education, Families, Financing, International health, Legislation, National programs, Parents, Public policies, Social services

Jones C. 1996. Single Parents and Early Intervention Programs: Participation and Goodness of Fit [Final report]. Philadelphia, PA: Philadelphia Child Guidance Clinic, 84 pp., plus tables and appendices (178 pp.).

Annotation: The primary objective of this study was to identify the combinations of child, parent/family, and service delivery variables that predict parent involvement in early intervention programs (EIPs) for low-income, single-parent families who have a handicapped child (as defined by Part H of P.L. 99-457). A secondary objective was to identify whether parent involvement in EIPs, in combination with family characteristics, was predictive of parenting outcomes, such as parenting behavior, knowledge, satisfaction, and stress. Parent variables predicted to most affect participation and outcomes include: (1) The supportive resources available to the family, (2) family functioning, (3) parental beliefs, and (4) stress. [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 PB97-155436.

Keywords: Children with Special Health care Needs, Early Intervention, Families, Low Income Population, MCH Research, Parents, Physical Disabilities, Research

Briggs HE, Koroloff NM, Richards K, Friesen BJ. 1993. Family advocacy organizations: Advances in support and system reform. Portland, OR: Portland State University, Research and Training Center on Family Support and Children's Mental Health, 149 pp.

Annotation: This report documents the progress of 15 projects funded by the Child and Adolescent Service System Program (CASSP) to encourage the development of statewide, family controlled organizational structures for families caring for children with serious emotional disorders. The report tracks the activities, process, and outcomes of two major project goals over a two-year period: 1) to stimulate and support the development of model statewide family organizations; and 2) to evaluate the conceptualization, implementation and outcomes of family organizations. It includes case studies, a survey form, and results from a family member survey.

Contact: Research and Training Center on Family Support and Children's Mental Health, Portland State University, P.O. Box 751, Portland, OR 97207-0751, Telephone: (503) 725-4040 Secondary Telephone: Fax: (503) 725-4180 E-mail: janetw@pdx.edu Web Site: http://www.rtc.pdx.edu Available at no charge.

Keywords: Affective disorders, Child advocacy, Children with developmental disabilities, Families, Family centered services, Family support services, Parents

McDonald TP, Donner R, Gregoire T, Poertner J, Early T. 1993. Family caregiving for children with a serious emotional disability: Phase one technical report. Portland, OR: Portland State University, Research and Training Center on Family Support and Children's Mental Health, 143 pp.

Annotation: This report examines factors influencing the functioning of families with children having a serious emotional disability, describing which families are most vulnerable, identifying unmet service needs, and proposing responsive strategies. It is based on a survey of families with children with emotional disabilities. Potential audiences include parents, educators, researchers, and professionals working with children. A literature review on how families respond to a child's chronic illness or disability is included. The survey and findings are included in the appendix.

Contact: Research and Training Center on Family Support and Children's Mental Health, Portland State University, P.O. Box 751, Portland, OR 97207-0751, Telephone: (503) 725-4040 Secondary Telephone: Fax: (503) 725-4180 E-mail: janetw@pdx.edu Web Site: http://www.rtc.pdx.edu Price unknown.

Keywords: Affective disorders, Children with developmental disabilities, Families, Parents, Social workers, Special education

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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.