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Strengthening the evidence for maternal and child health programs

AIM Partners: Products Developed by Family Voices Bibliography

AIM Partners: Products Developed by Family Voices

Bibliography of Materials from MCHLine®

This bibliography of 42 items is drawn from MCHLine®, the MCH Digital Library online catalog. It includes selected materials published in the last ten years that discuss guidelines and standards of care for children with special health care needs.

The MCH Digital Library focuses on publications from federal and state agencies, from grantees of federal and state agencies, and from professional and voluntary organizations. It contains unique materials on the history of maternal and child health in the United States, policy papers, reports, conference proceedings, manuals, survey instruments, guidelines, and curricula. The library does not collect materials on clinical medicine. Consumer health materials and commercially published materials are collected very selectively.

Displaying 42 records.

Family Voices. n.d.. First steps for family leaders: Forming collaborative relationships with your state Title V Program. Albuquerque, AZ: Family Voices, 2 pp.

Annotation: This fact sheet provides information on how family leaders can form collaborative relationships with their state Title V programs. The fact sheet lists 10 steps that family leaders can take to develop or renew such partnerships. Resources for more information are also provided.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Collaboration, Families, Relationships, State MCH programs, Title V Programs

Family Voices, IMPACT. n.d.. The Affordable Care Act (ACA): Prevention and health promotion for everybody!. Albuquerque, NM: Family Voices, IMPACT, 2 pp.

Annotation: This document encourages families to partner with health professionals on getting preventive health services and to take a lead role in promoting health at home and where they live, work, and play. Topics include how information sharing between families and health professionals can promote child health, the Affordable Care Act's preventive health services for children, the Bright Futures initiative, and tips for a healthy lifestyle. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Bright Futures, Child health, Children, Families, Family centered care, Health care reform, Health promotion, Parent professional relations, Patient Protection and Affordable Care Act, Preventive health services, Public private partnerships, Special health care needs

Family Voices; IMPACT. n.d.. Transitions--Growing up and away. Albuquerque, NM: Family Voices, IMPACT, 3 pp.

Annotation: This fact sheet provides tips to help parents of adolescents with special health care needs support their sons' and daughters' transition into adulthood.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Adolescent development, Adolescents with special health care needs, Parenting, Transition planning, Transitions, Young adults

Association of Maternal and Child Health Programs and Family Voices. 2016. Stories of the newly enrolled: How new ACA coverage options are impacting women and families raising children with special health care needs. Washington, DC: Association of Maternal and Child Health Programs, 7 pp.

Annotation: This brief presents five case studies of women, young adults, and families, including those raising children and youth with special health care needs (CYSCHN), about enrolling in and receiving care through the Affordable Care Act (ACA) health insurance coverage. The contents illustrate some of the benefits of the ACA's new coverage options for women and families with CYSCHN and challenges that remain in closing gaps in care and ensuring appropriate coverage for vulnerable populations. Topics include ACA provider networks, autism treatment coverage; and coverage for Native Americans; immigrant and refugee women, and young adult women. [Funded by the Maternal and Child Health Bureau]

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: info@amchp.org Web Site: http://www.amchp.org Available from the website.

Keywords: Access to health care, American Indians, Case studies, Children with special health care needs, Family centered care, Financing, Health care reform, Health insurance, Immigrants, Patient Protection and Affordable Care Act, Program improvement, Refugees, Women, Young adults

Mass Family Voices. 2015. Family engagement guide: The role of family health partners in quality improvement within a pediatric medical home. Boston, MA: National Institute for Children's Health Quality, 47 pp.

Annotation: This guide provides direction on how to effectively engage family perspectives in a pediatric practice. Topics include examining the role and benefits of family health partners (FHPs); building practice readiness for FHPs as team members; family training and partner orientation; building communication and leadership skills; and evaluating, sustaining, and improving family engagement and the FHP role. Handouts for families and practices are included. The guide is available in English and Spanish.

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: info@nichq.org Web Site: http://www.nichq.org Available from the website.

Keywords: Families, Medical home, Patient care teams, Pediatric care, Program improvement, Quality assurance, Role, Spanish language materials, Training

Family Voices of California. 2015. Project leadership training manual. San Francisco, CA: Family Voices of California, multiple items.

Annotation: This curriculum is designed to assist families in developing the skills necessary to successfully partner and engage in all levels of public advocacy on behalf of children with special health care needs. Topics include the history and purpose of advocacy; systems, laws, and entitlements; enhancing communication; developing and presenting stories to others; participating on decision-making bodies; and connecting with local change makers. Contents include an introduction, presentation slides and handouts (including pre-training slides and handouts), and materials for training-related activities.

Contact: Family Voices of California, 1663 Mission Street, 7th Floor, San Francisco, CA 94103, Telephone: (415) 282-7494 E-mail: info@familyvoicesofca.org Web Site: http://www.familyvoicesofca.org Available from the website.

Keywords: Adolescents, Advocacy, Children, Collaboration, Communication skills, Curricula, Decision making, Families, Leadership, Public private partnerships, Resource materials, Special health care needs, Training

Family Voices. 2015. Title V tip sheet: 5-year needs assessment. Albuquerque, NM: Family Voices, 2 pp.

Annotation: This tip sheet describes opportunities for families to strengthen partnerships and collaborative efforts at the federal, state, and local levels by contributing to the Title V Block Grant to States Program needs assessment. Contents include background and information about the needs assessment content and process, analysis of findings, how states will use the findings, how families can learn about states' findings, and how families might use the information. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, Community participation, Families, Needs assessment, Title V programs

Family Voices, IMPACT. 2015. Well Visit Planner media toolkit. Albuquerque, NM: Family Voices, IMPACT, multiple items.

Annotation: This toolkit is designed to help families raise awareness about the Well-Visit Planner™, a tool to help parents of children ages four months to 6 years learn about and plan for their child's next preventive care visit. Contents include handouts in English and Spanish, sample articles, videos, presentations, social media content, and web buttons. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Consumer education materials, Families, Mass media, Patient care planning, Pediatric care, Preventive health services, Spanish language materials, Special health care needs, Young children

Family Voices. [2013]. Alphabet soup: A glossary of health care terms for families of children/youth with special health care needs/disabilities. Albuquerque, NM: Family Voices, 15 pp.

Annotation: This glossary presents commonly used terms and definitions used in discussions about children with special health care needs with health care providers, services agencies, and healthcare insurance providers. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Family / Professional Partnerships, Family Voices, 3701 San Mateo Boulevard, N.W., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-ncfpp.org Available from the website.

Keywords: Children with special health care needs, Dictionaries, Resources for professionals

Genetic Alliance, Parent to Parent USA, Family Voices. 2013-. Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success. Washington, DC: Genetic Alliance, multiple items.

Annotation: This toolkit provides individuals with special health care needs and their families with tools and strategies to advocate for whatever they may need. Topics include access to health care, accessible communities, advocacy and leadership skills, communicating about health, education services and support, insurance and financial assistance, legislation and political action, steps to employment success, transition to adulthood, and youth leadership. A series of webinars that describe the toolkit and present self- and parent-advocate stories are also available from the website. [Funded in part by the Maternal and Child Health Bureau]

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Access to health care, Advocacy, Communication, Family support services, Leadership, Life course, Special health care needs, Transitions

Genetic Alliance, Family Voices. 2013. Children and youth with special healthcare needs in Healthy People 2020: A consumer perspective. Washington, DC: Genetic Alliance; Albuquerque, NM: Family Voices, 44 pp.

Annotation: This document examines Healthy People 2020 objectives and serves as a companion to Envision 2020, the 10-year strategic plan for the Division of Services for Children with Special Heath Needs in the Health Resources and Services Administration's Maternal and Child Health Bureau. The document provides background; discusses trends in programs, legislation, and care for children and youth with special health care needs (CYSCN); provides core performance measures for CYSCN; discusses who is at risk for chronic illnesses and disabilities; and offers information about preparing children and families for the future. Stories about individual children and families are included.

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Adolescents with special heath care needs, Chronic illnesses and disabilities, Environmental influences, Families, Health services, Healthy People 2020: Children with special health care needs, High risk children, High risk infants, Infants with special health care needs, Legislation, Programs, Transition planning, Young adults

Family Voices, IMPACT. 2013. Ensuring children get needed dental services. Albuquerque, NM: Family Voices, IMPACT, 1 p. (IMPACT on Health & Wellness for Families)

Annotation: This fact sheet provides guidance for families on ways to ensure optimal oral health for their child or adolescent with special health care needs. Contents include tips on locating and receiving preventive and treatment services, modeling oral hygiene routines at home, communicating with children and adolescents about their oral health, and advocating on children's and adolescents' behalf. Resources are also included. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Access to health care, Adolescents with special health care needs, Children with special health care needs, Consumer education, Dental hygiene, Family centered care, Health promotion, Oral health

Carroll L, Vickers M. 2013. Translating life course messages into family-friendly language. Albuquerque, NM: Family Voices, IMPACT, 1 p.

Annotation: This poster describes a study to translate life course health development knowledge and research into messages that are meaningful to and empowering for families. Contents include a problem statement and information about the study's aims, approach, methods, and findings. Topics include barriers faced by families, family characteristics, and take home messages. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Barriers, Communication, Families, Family characteristics, Life course, Research

Family Voices. [2012]. Getting to know Title V [rev.]. Boston, MA and Albuquerque, NM: Family Voices, 38 pp. (Partnerships: Families and Title V)

Annotation: This booklet provides basic information about maternal and child health (MCH) services funded under Title V of the Social Security Act. The booklet, which is written in large print, presents brief facts about the program's background and history, the federal-state partnership, appropriations, requirements, MCH populations, family-centered care and family involvement, performance and outcome measures, the Title V Block Grant process, and the Title V Information System. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, Families, Federal MCH programs, History, Social Security Act, Title V, Title V programs

Vickers M, Anderson B, Dworetzky B, Popper B. 2012, 2014. Bright Futures family pocket guide: Raising healthy infants, children, and adolescents (2nd ed.). Boston, MA: Family Voices, 161 pp.

Annotation: This pocket guide is developed for families by families, in partnership with the American Academy of Pediatrics based on Bright Futures: Guidelines for the Health Supervision of Infants, Children, and Adolescents (3rd ed.). The guide provides information and encouragement for the roles families play every day in the health and well-being of their children; the importance of well child visits for all children, including children and youth with special health care needs; encouragement to speak up and to take active roles in their children’s care; encouragement to form partnerships with other families and with professionals to improve policies, care, services, and support for all children and families; an overall framework for children’s good health and insight into all those who contribute to it; current, comprehensive, succinct information about child development; and links to resources and further sources of information for children’s good health. The pocket guide is available in English and Spanish. A 10-page guide on using the pocket guide is also available. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Contact Phone: (617) 236-7210 Fax: (505) 872-4780 Contact Fax: (617) 572-2094 Contact E-mail: betsyand@fcsn.org Web Site: http://www.familyvoices.org $5.00, plus shipping (English), $2.45, plus shipping (Spanish); user's guide available at no charge. Document Number: ISBN 978-02-9857207-0-4.

Keywords: Adolescents, Children, Consumer education materials, Guidelines, Health supervision, Infants, Spanish language materials

Family Voices, IMPACT. 2012–. Updates and tips: Health and wellness themes [IMPACT on health and wellness for families]. Albuquerque, NM: Family Voices, IMPACT, multiple items.

Annotation: These resources for families provide tips and updates on key health and wellness themes including family support, child development, mental health, healthy weight, healthy food and eating, physical activity, oral health, healthy sexual development and sexuality, safety and injury prevention, and community relationships and resources. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Caregiving, Child health, Families, Family centered care, Special health care needs

Family-to-Family Health Information Center at the Federation for Children with Special Needs, Mass Family Voices, National Institute for Children's Health Quality. 2012. Creating a patient and family advisory council: A toolkit for pediatric practices. Boston, MA: National Institute for Children's Health Quality, 42 pp.

Annotation: This toolkit is designed to assist pediatric practices in building a system for listening to feedback by creating a Patient and Family Advisory Council (PFAC). It provides step-by-step guidance on how to effectively engage family perspectives in the design of pediatric services and to improve overall quality in the delivery of those services. Topics include assessing practice readiness for a PFAC; recruiting diverse patient and family representatives as council members; supporting the process of authentic family engagement and involvement; and sustaining and evaluating a PFAC. An index of resources and an annotated bibliography are included.

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: info@nichq.org Web Site: http://www.nichq.org Available from the website.

Keywords: Advisory committees, Family centered care, Health services delivery, Multimedia, Patient care, Pediatric care, Quality improvement

Family Voices. 2012. Strategic plan 2012-2015. Albuquerque, NM: Family Voices, 2 pp.

Vickers M, ed. 2011–. Bright Futures Family Matters. Albuquerque, NM: Family Voices, IMPACT, irregular.

Annotation: This newsletter provides information and resources to help professionals and families promote health in children and adolescents including those with special health care needs. Contents include information on child health topics such as child development, nutrition, and physical activity; caregiving; campaigns and initiatives; community health; networking and partnerships; and research. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, IMPACT, 3701 San Mateo Boulevard, N.E., Suite 103, Albuquerque, NM 87110, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.fv-impact.org Available from the website.

Keywords: Adolescents, Bright Futures, Children, Consumer education materials, Families, Family centered care, Health promotion, Special health care needs

Phillips A, Riddle I, Sands M. 2011. Connecting the dots: A guide to finding services for children and adults with disabilities and special health care needs in Delaware (2nd ed.). Newark, DE: University of Delaware, Center for Disabilities Studies; [New Castle, DE]: Delaware Family Voices, Family to Family Health Information Center, 40 pp.

Annotation: This guide is designed to help individuals with a newly-diagnosed condition or special health care need and their family members find available supports and services in Delaware. It contains suggestions for where to begin a search for information and services; resources (state agencies, first steps resources, and next steps resources); definitions of medical and disability-related terms and acronyms; and family stories. [Funded by the Maternal and Child Health Bureau]

Contact: Delaware Family Voices, 61 Corporate Circle, Rooms 135 and 136, New Castle, DE 19720, Telephone: (877) 235-3588 Secondary Telephone: (302) 221-5360 Fax: (302) 324-4441 (Must put ATTN: Delaware Family Voices) Web Site: http://www.delawarefamilytofamily.org/ Available from the website.

Keywords: Adolescents, Children, Delaware, Families, Family centered care, Family support, Health services, Infants, Special health care needs, State programs

Family Voices. 2011. Promoting oral health (rev. ed.). Albuquerque, NM: Family Voices, 2 pp. (Bright Futures theme sheets for families)

Annotation: This tip sheet describes oral health, its relationship with overall health, and what families can do to promote oral health. Topics include oral health during infancy, early childhood, middle childhood, and adolescence and oral health in children with special health care needs. The tip sheet also provides information on resources for families. [Funded by the Maternal and Child Health Bureau]

Keywords: Child development, Children, Children with special health care needs, Educational materials, Families, Health promotion, Oral health

Family Voices. [2010]. Title V 5-year needs assessment. Albuquerque, NM: Family Voices, 2 pp.

Annotation: This fact sheet describes the requirement for each state to perform a needs assessment for preventive and primary care services for pregnant women, mothers, infants, children, and services for children with special health care needs. Topics also include what families can contribute to the assessment, background, content and process, analysis and findings, how states use the findings, and how families can learn about and use findings. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, Children, Children with special health care needs, Families, Federal MCH programs, Health care services delivery, Infants, Needs assessment, Parent professional relations, Pregnant women, Social Security Act, Title V, State MCH programs, State surveys

Family Voices. 2010. Promoting healthy weight. Bright Futures: Family Matters 10(1):1-2. March 2010,

Annotation: This issue of the monthly Family Voices newsletter Family Matters focuses on promoting healthy weight among children and adolescents. The newsletter offer information about why preventing obesity is important and discusses the Let's Move campaign launched by First Lady Michelle Obama to help raise a healthier generation of children. Tips are provided on how to promote a healthy weight for infants, young children, older children, adolescents, and children with special health care needs. Information about recent research and resources for more information are also provided.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org .

Keywords: Adolescents with special health care needs, Child health, Families, Health promotion, Infant health, Nutrition, Obesity, Physical activity, Prevention, Research, Weight management

Family Voices of Wisconsin. 2010. Shared participation: Strategies to increase the voice of families from diverse backgrounds as partners and advisors. Madison, WI: Family Voices of Wisconsin, 17 pp.

Annotation: This report documents Family Voices' conversations with parents of children and youth with special health care needs and/or disabilities from diverse cultural groups (Hispanic, African American, and Native American). The report describes parents' concerns about and perceived barriers to (1) being partners in decision-making about supports and services and (2) being advisors to committees and councils. The report also shares parents' recommendations for how to improve their capacity to be effective decision-makers for their own children, and provides parents' suggestions for improving organizational recruitment and support for participation on advisory committees and for other leadership roles. The report discusses engaging Hispanic parents, African-American parents, and Native American parents and presents common themes across groups for recruiting and supporting parents new to advisory roles.

Contact: Family Voices of Wisconsin, P.O. Box 55029, Madison, WI 53705, Telephone: (608) 220-9598 E-mail: barb@FVofWI.org Web Site: http://www.FVofWI.org Available from the website.

Keywords: Adolescent with special health care needs, Advisory committees, American Indians, Blacks, Children with special health care needs, Cultural factors, Health services, Hispanic Americans, Leadership, Minority groups, Parent participation, Parent professional relations, Parent support services, Parents, Recruitment

Family Voices. 2009. Friday's Child: Special oral health edition. Albuquerque, NM: Family Voices, 4 pp.

Annotation: This issue of the Family Voices’ newsletter for parents focuses on oral health for children with special health care needs (CSHCN). Topics include an oral health partnership in Kansas created to provide CSHCN with access to appropriate oral health services and to provide oral health education for their families. The issue also includes a review of oral health provisions in the Children’s Health Insurance Program.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Children, Children with special health care needs, Children's Health Insurance Program, Kansas, Oral health, State initiatives

Family Voices. 2009. Healthy sexual development. Bright Futures: Family Matters 10(1):1-2. September 2009,

Annotation: This issue of the monthly Family Voices newsletter Family Matters focuses on promoting healthy sexual development among children and adolescents. The newsletter offer information about why healthy sexual development is important and provides tips on how to promote healthy sexual development for infants, young children, older children, and adolescents. Information about recent research and resources for more information are also provided.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org

Keywords: Adolescent development, Adolescent sexuality, Child development, Early childhood development, Families, Health promotion, Infant development, Parent child relations, Research, Sexuality

Family Voices. 2009. The Family Voices leadership guide: Advocating for children and youth with special health care needs. Algodones, NM: Family Voices, 1 v.

Annotation: This handbook was created by families for families of children and youth with chronic illness or disabilities. It explains health care systems important to children with special health care needs (CYSHCN), the roles families can play in accessing and improving these services, and ways families can participate in policy discussions about service systems for CYSHCN. It aims to promote the development of family leaders who are effective advocates. It describes individual and systems advocacy and provides resources such as advocacy forms, lists of organizations and agencies, acronyms and a glossary. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Advocacy, Consumer education materials, Family centered care, Handbooks, Health insurance programs, Legislation, Managed care, Medicaid, Special health care needs, Title V programs

Family Voices. 2008. Family-centered care self-assessment tool: Provider tool. Albuquerque, NM: Family Voices, 8 pp.

Annotation: This provider tool helps health care professionals assess whether they are providing family-centered care and identify areas for growth in their practices. It covers the family-provicer partnership, care setting practices and policies, and community systems of services and supports. A glossary is included. A user's guide and a family tool are also available. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Family centered services, Family relations, Health care delivery, Patient care management, Resources for professionals

Family Voices. 2008. Family-centered care self-assessment tool: User's guide. Albuquerque, NM: Family Voices, 13 pp.

Annotation: The user's guide provides a detailed set of steps to use the family and provider tools for a full assessment of a practice setting or family, with or without special health care needs. In addition, it may be used as an educational tool to build awareness and knowledge of family-centered care for families, youth, providers, health plans, and policy-makers. The guide is also available on a compilation CD-ROM. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Family centered care, Health services delivery, Patient care planning

Family Voices. 2008. Healthy oral health. Bright Futures: Family Matters 9(3):1-2,

Annotation: This issue focuses on oral health promotion for children and adolescents of all ages. It describes the importance of proper oral health for all of the mouth, provides tips for all ages and those with special health care needs, and lists resources for more information. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Children with special health care needs, Oral health, Children, Adolescents

Dworetzky B, ed. 2008. Healthy oral health. Bright Futures: Family Matters 9(3):1-2,

Annotation: This issue of Bright Futures: Family Matters provides information and resources for families about oral health and oral health care for children and adolescents, including those with special health care needs. Topics include promoting oral health at home, research on oral health as a measure of overall quality of life, and resources from key organizational partners. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Anticipatory guidance, Children, Children with special health care needs, Dental care, Families, Family centered care, Oral health

Popper B, Irish S, Dworetzky B, Anderson B, Minihan P, Must A. 2008. Promoting health and wellness for children with special heath care needs family booklet. Albuquerque, NM: Family Voices, 43 pp.

Annotation: This booklet for families of children with special health care needs provides guidelines, tips, and resources on healthy eating, physical activity, and screen time. Topics include stress-free meal times;, healthy weight; family involvement; safety while active; setting limits on TV, computer, and video; and family rules. It is available in English and Spanish.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Children with special health care needs, Families, Nutrition, Physical activity, Safety, Spanish language materials

Family Voices. 2007. Families partnering with providers. Albuquerque, NM: Family Voices, 4 pp.

Wells N, Anderson B. 2006. Families in Program and Policy FiPPs CSHCN report: Interviews on family participation with State Title V children with special health care needs programs. [Rev. ed.]. Albuquerque, NM: Family Voices, 53 pp.

Annotation: This report presents information about the ways families and family organizations are involved with Title V children with special health care needs (CSHCN) state programs. The report is based on information collected through telephone interviews with Title V CSHCN programs. The report includes a background section, an executive summary, findings, and a conclusion. Findings are categorized as follows: (1) family involvement in CSHCN and MCH programs, 1992 and 2002, (2) overall family involvement in CSHCN programs, (3) family involvement in advisory committees and task force groups, (4) family involvement in addressing state performance measures and special initiatives, (5) family involvement in the block grant process, (6) family members employed by CSHCN programs, (7) family involvement in in-service trainings, (8) support provided to family organizations and families, (9) support provided to families and family organizations, (10) strategies for the involvement of underserved populations, and (11) from the viewpoint of family leaders. The report includes five appendices: (1) Title V toolbox for family participation, (2) suggested strategies for family involvement, (3) state-by-state tables, (4) CSHCN questionnaire, and (5) family leader questionnaire. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, CSHN programs, Children with special health care needs, Community participation, Families, Family support, Initiatives, MCH programs, Parent participation, State programs, Title V programs, Training, Underserved communities

Anderson B, Wells N. 2005. Families in Program and Policy FiPPs MCH report: Interviews on family participation with State Title V maternal and child health programs. Albuquerque, NM: Family Voices, 50 pp.

Annotation: This report presents information about the ways families and family organizations are involved with Title V maternal and child health (MCH) state programs. The report is based on information collected through telephone interviews with state MCH programs. The report includes the following main sections: (1) introduction and background, (2) methodology, (3) summary of findings, (4) overall family involvement in MCH programs, (5) family involvement in advisory committees, (6) family involvement in addressing state performance measures, (7) family involvement in initiatives to improve MCH, (8) family involvement in the block grant process, (9) family members employed by MCH programs, (10) family involvement in in-service trainings, (11) support provided to family organizations and families, (12) support provided to family organizations and families, (13) strategies for the involvement of underserved populations, (14) family involvement in MCH and children with special health care needs programs, 1992 and 2002, (15) insights and recommendations, (16) Title V toolbox for family participation, (17) state by state tables, and (18) MCH questionnaire.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Block grants, Children with special health care needs, Community participation, Families, Family support, Initiatives, MCH programs, Parent participation, State programs, Title V programs, Training, Underserved communities

Family Voices and Tufts University School of Medicine. 2005. Family Matters: Using Bright Futures to promote health and wellness for children with disabilities. Albuquerque, NM: Family Voices, 2 pp.

Annotation: This pamphlet states the goals, phases, and contact information of the Family Matters project. Topics include focus groups, educational workshops, and peer mentor contact.

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Family support services

Family Voices. [2003]. Health care visit check list for all children including children with special health care needs. Albuquerque, NM: Family Voices, 4 pp.

Annotation: This check list for parents provides tips on choosing a health professional, preparing for a health visit, what to do during the visit, and what to ask yourself after the visit. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available at no charge; also available from the website.

Keywords: Adolescents, Children, Guidelines, Health supervision, Infants

Algus K, Popper B, Wainstock L. 2003. Family Voices in SCHIP telemedicine report: Bridges, not boundaries—The value and use of telemedicine for children/youth with special health care needs. Boston, MA: Family Voices, 44 pp.

Annotation: This report provides findings from a survey of telemedicine providers and parents regarding the potential, the pitfalls, the realities and the hopes for telemedicine's role in providing medical care to children and youth with special health care needs. Appendices include a checklist for families to use if telemedicine is offered to them, a family satisfaction questionnaire offered as a working model for programs to use with families experiencing telemedicine visits, a list of contacts of those who responded to the questionnaire, and a list of resources. [Funded in part by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Families, Health personnel, Medical technology, Patient satisfaction, Questionnaires, Surveys, Telecommunications, Telemedicine

Family Voices. [2002]. Parents partnering with managed care plans: A discussion guide on services for children with special health care needs. Boston, MA: Federation for Children with Special Needs, 7 pp.

Annotation: This brochure provides questions -- derived from interviews with 41 managed care plans across the nation conducted to learn about programs and policies and to share information about resources for children with special health care needs (CSHCN) -- that can be used as a starting point for discussions between families and managed care plans examining current systems of care and initiating improved programs and policies for CSHCN. Topics include identifying CSHCN, ensuring appropriate care, primary care and specialty care referrals, care coordination and case management, mental health and behavioral health services, resolving disagreements about care, and involving families of CSHCN in policy and program activities. For each topic, a list of questions is included.

Contact: Federation for Children with Special Needs, 529 Main Street, Suite 1102, Boston, MA 02120, Telephone: (617) 236-7210 Secondary Telephone: (800) 331-0688 Fax: (617) 241-0330 E-mail: fcsninfo@fcsn.org Web Site: http://www.fcsn.org Available at no charge; also available from the website.

Keywords: Behavior problems, Case management, Children with special health care needs, Conflict resolution, Families, Interviews, Managed care, Primary care, Programs, Referrals, Service coordination, Systems of care

Anderson B, Cruz KA, Popper BK. 2000, 2005. Bright Futures family pocket guide: Raising healthy infants, children, and adolescents. Boston, MA: Family Voices, 100 pp.

Annotation: This pocket guide, based on Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, (2nd ed.), is a reference for families that highlights important child health topics. The pocket guide addresses what families might expect in the development of the child at various stages. Information is also given about health care, health care providers, and a list of resources is included. The guide is available in English and Spanish. [Funded in part by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Contact Phone: (617) 236-7210 Fax: (505) 872-4780 Contact Fax: (617) 572-2094 Contact E-mail: betsyand@fcsn.org Web Site: http://www.familyvoices.org

Keywords: Adolescents, Children, Consumer education materials, Guidelines, Health supervision, Infants, Spanish language materials

Wells N, Krauss MW, Anderson B, Gulley S, Leiter V, O'Neil M, Martin L, Cooper J. 2000. What do families say about health care for children with special health care needs? Your voice counts!! The Family Partners Project report to families. (2nd ed.). Boston, MA: Family Voices, 16 pp.

Annotation: This report is a summary of responses to a survey entitled Your Voice Counts!! that was mailed to families of children with special health care needs, between March 1998 and April 1999. The survey was developed by Family Partners, a collaborative project of Family Voices and Brandeis University. The purpose of the survey was to find out about the health care experiences of children with special health care needs and their families. [Funded in part by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Children with special health care needs, Health surveys, Managed care, Primary care

Family Voices. 1996. Alphabet soup: Health care definitions for children with special health needs. Voices. 2 pp. November-December 1996,

Annotation: This issue of this newsletter provides definitions for terms that families of children with special health needs should know as they provide care for their children in the continually changing health care systems. The newsletter is available in English and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.

Keywords: Children with special health care needs, Dictionaries, Health services, Spanish language materials

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.