Resources
The following materials are provided to help you learn about and build family / professional partnerships. Family Voices has a large compendium of resources and materials on many topics, including parent leadership, well-care, data and research, etc. Please visit the Publications section of the Family Voices website to learn more about these additional materials.
About F2F HICs and NCFPP
- Project Abstract – (doc)
- Overview – (pdf)
A 1-pager that describes the NCFPP. - Family to Family Health Information Centers Brochure – (pdf)
A brochure describing the work and funding of F2F HICs with contact information (as of September 2007) 
2008-2009 F2F HIC Data Report: Learning More about Families of Children with Special Health Care Needs - (pdf) | (hardcopy – catalog order)
A 4-page data report that reviews statistics on the activities of 40 Family-to-Family Health Information Centers (F2F HICs) from July 2008 through May 2009, along with data from the National Survey of CSHCN and other sources, to demonstrate the importance of F2F HICs in assisting families of children with special health care needs/disabilities. This report highlights the impact of special health care needs on children, families, and programs/policies. Poignant quotes from families and F2F staff are included to underscore the importance of F2F’s in assisting families and professionals.
- 2008-2009 F2F HIC Data Highlights - (pdf) | (hardcopy – catalog order)
A 1-page data report that provides highlights of data reported by 40 F2F HICs from July 2008 - May 2009; also includes highlights of activities of specific F2F HICs
2007-2008 F2F HIC Data Brief - (pdf) | (hardcopy – catalog order)
A 1-page data brief highlighting the activities of Family-to-Family Health Information Centers from July 2007 through June 2008.
- Guide to Technical Assistance – (pdf)
A brochure describing the direct and indirect Technical Assistance (TA) services provided by Family Voices; includes contact information for specific TA. - Families Helping Families of Children and Youth with Special Health Care Needs & Professionals who Serve Them
(pdf) | (hardcopy – catalog order)
A summary of data reported by the Family Voices Network and Family-to-Family Health Information Centers for the period July, 2005 through June, 2006, about: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals. - Data Summary of 21 Funded F2F HICs (July, 2004 through June, 2005) (pdf)
Findings from 21 funded F2F HICS for the period July, 2004 through June, 2005, summarized by: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals. - Data Summary of 13 Funded F2F HICs (July, 2003 through June, 2004) (pdf) Findings from 13 funded F2F HICS for the period July, 2003 through June, 2004, summarized by: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals.
- Family to Family Health Information Centers Data Summary (July, 2003 through June, 2004) (pdf)
Charts and highlights of data reported to Family Voices by F2F HICs and Network Members; includes data about contacts with families and professionals, topics of information provided during contacts, issues with health care financing, and broader scope activities, such as newsletters distributed, listserv members, handouts, meetings, and underserved population reached. - Innovative Strategies for Strengthening Family to Family Health Information And Education Centers (pdf)
A 35-page report prepared for CMS by Thomson Medstat, Research and Policy Division, that provides a brief overview of the F2F HICs and examples of grantees’ strategies focused on such areas as developing partnerships, enhancing communication with families, serving culturally diverse populations, facilitating the transition to adulthood and ensuring sustainability. - Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees (pdf and html)
A 55-page paper prepared for CMS that describes the activities of the 19 Grantees funded in fiscal year 03 and 04 from CMS and six Grantees funded in fiscal year 02 by the Maternal and Child Health Bureau (MCHB), providing information about grant activities, implementation challenges, and accomplishments of the F2F HICs.
About Family-Centered Care
- Definition and Principles of Family-Centered Care (rtf)
A 3-page handout from MCHB that defines family-centered care, outlines the principles of family-centered care, and includes the role of cultural competency in family-centered care. - The Family-Centered Care Self-Assessment Tool – User’s Guide (pdf)
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. In addition, the tool 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 items of the tool may also be used in defining family-centered care for policies, contracts and quality standards and can be used to compare a family-centered approach with other care models. The Tools are intended to assess care for all children and youth and also has some questions that are specific to the needs of children and youth with special health care needs and their families. - The Family-Centered Care Self-Assessment Tool – Family Tool (pdf)
Families, both individually and within family support and advocacy organizations, can use this tool to increase awareness and knowledge of the specifics of family-centered care to more effectively:- Assess the quality of the care that they and their children receive;
- Share knowledge about family-centered care with other families, with providers, with health plans and with policy makers to create a shared vision for improving the health care system;
- Advocate for changes within health care settings, health plans and public agencies to more effectively support families and their children in the process of receiving care.
- The Family-Centered Care Self-Assessment Tool – Provider Tool (pdf)
Health care settings can use this structured tool in quality improvement activities and to support development of the first key component of a medical home as defined by the American Academy of Pediatrics—“provision of family-centered care through developing a trusting partnership with families, respecting their diversity, and recognizing that they are the constant in a child’s life” (AAP, 2002). This tool can be used to increase family satisfaction with the care setting and to increase its standing in the community.
About Partnering
- Family Partnerships for CSHCN – (ppt)
A presentation that outlines the principles and components of family partnerships. - Partnerships between Families and Professionals: Looking Back and Looking Forward – (ppt)
A presentation that reviews the history of family / professional partnerships and provides examples of partnership activity and the perspective of those involved. - Families Partnering With Providers -(pdf) | (hardcopy – catalog order)
Tips on communicating with your child’s providers focused in the following areas: Preparing For An Office Visit, Talking With Your Child’s Provider, Learning More (after the visit with the provider), and Helping Your Provider Help Other Families. - Parent’s Partnering with Managed Care Plans ( pdf) | (hardcopy – catalog order)
A 7-page pamphlet of topics and questions which can be used as a starting point for families and plans to share perspectives on services for CSHCN and to help guide plans and families in ways to partner together to improve services for this population. - Families in Title V (html)
Materials from this Family Voices project that document and support family partnership with Title V programs and the Title V block grant, including workbooks, presentations, and booklets of partnership information, ideas, and strategies. - Title V Toolbox (html)
A collection of materials developed by states that support family involvement in MCH and CSHCN programs. - Guidelines for Organizing (pdf)
A brief guide to forming and managing a group to achieve social change. - Families in Program and Policy FiPPs CSHCN Report -(pdf) | (hardcopy – catalog order)
Summary of results of interviews conducted with state Title V CSHCN Directors/Staff regarding participation of families in program and policy activities. Please let us know what you think of this report by completing a short survey. - Families in Program and Policy FiPPs MCH Report -(pdf) | (hardcopy – catalog order)
Summary of results of interviews conducted with state Title V MCH Directors/Staff regarding participation of families in program and policy activities. Please let us know what you think of this report by completing a short survey.
About Cultural Competency
- Growing Your Capacity to Engage Diverse Communities by working with Community Liaisons and Cultural Brokers (pdf) | (hardcopy – catalog order)
A 19-page resource about building relationships with community liaisons and cultural brokers to reach families of CYSHCN, particularly members of underserved groups. - Diversity Statement (html) | (pdf )
Family Voices proclamation to its commitment to the infusion of diversity and cultural competency throughout its agency and network.
For Families
- Learn the Signs - Act Early Campaign. (website)
While parents are very aware of changes in their young child’s physical development, such as height and weight, there are also important milestones children should reach in terms of how they play, learn, speak, and act. Smiling for the first time, making eye contact, and pointing are just a few of these developmental milestones. A delay in any of these areas could be a sign of a developmental problem, even autism. The good news is, the earlier a delay is recognized the more you can do to help a child reach their full potential. To educate parents about developmental milestones and warning signs of a development delay, such as autism, and the importance of acting early, the Centers for Disease Control and Prevention (CDC) created the “Learn the Signs. Act Early.” campaign. The campaign offers free materials and resources including fact sheets, milestone checklists, growth charts, and flyers, in English and Spanish. To order or download materials, visit www.cdc.gov/actearly.
For/About Youth
- Kids As Self Advocates (KASA) Youth Leadership Guide (doc)
A “How-To” Manual on including youth as leaders in your organization, agency or project. - Kids As Self Advocates (KASA) Informations Sheets (html)
Tip sheets and other youth-friendly publications written by and for youth.
F2F HICs, PARTNERS, AND OTHER ORGANIZATIONS
Families/Youth Connecting with Other Families/Youth:
- Family-to-Family Health Information Centers (F2F HICs)
Parent-staffed organizations located in all states and the District of Columbia, providing information, support, and referral about health care issues for families of children and youth with special health care needs. - Family Voices in the states
Family Voices is represented by Network Members in every state who provide a variety of assistance to families of children and youth with special health care needs. - Kids As Self Advocates
A national, grassroots network of youth with disabilities and needs (and our friends), speaking out.
National Centers
- National Center for Cultural Competence
The NCCC provides national leadership and contributes to the body of knowledge on cultural and linguistic competency within systems and organizations. Major emphasis is placed on translating evidence into policy and practice for programs and personnel concerned with health and mental health care delivery, administration, education and advocacy. - National Center for Community-Based Services
A leadership and resource center designed to support states and communities in organizing services so families of children and youth with special health care needs (CYSHCN) can use them easily and families are satisfied. The implementation of community-based service systems is a key component of Healthy People 2010 as stated in its Objective 16.23: to increase the states and territories that have service systems for children with special health care needs. The Institute for Community Inclusion was awarded a cooperative agreement from MCHB in 2010 to operate this national center. - National Center for Hearing Assessment and Management (NCHAM)
This National Resource Center (NRC) assists state agencies and other federal and non-federal partners in the development and operation of sustainable statewide Early Hearing Detection and Intervention (EHDI) systems. - The National Center for Medical Home Initiatives for Children with Special Needs
The National Center of Medical Home Initiatives for Children with Special Needs provides support to physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home. - National Health Care Transition Center for Youth with Special Health Care Needs
The project will assure that youth with special health care needs are prepared for their transition from pediatric to adult health care and that they experience a smooth and seamless transfer of care from pediatric primary care and specialty care to adult settings. NH’s Center for Medical Home Improvement was awarded the cooperative agreement in 2010 to operate this national center. - The Catalyst Center
A national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN).
Other Organizations
- State Title V CSHCN Departments
Contact information for State Title V CSHCN Departments responsible for administering health care programs for children and youth with special health care needs. - Maternal and Child Health Bureau (MCHB)
Federal agency responsible to programs and policies for children and youth with special health care needs. Provides funding for several F2F HICs and several National Centers focused on health care. - Centers for Medicare and Medicaid Services (CMS)
Federal agency responsible for administering Medicaid. Provides funding for several F2F HICs. - National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Federal agency that promotes the health of babies, children, and adults, and enhances the potential for full, productive living. Their work includes identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. - American Academy of Pediatrics (AAP)
An organization of 60,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. - National Initiative for Children's Healthcare Quality (NICHQ)
An organization dedicated solely to improving the quality of health care provided to children through raising awareness, identifying best practices, and by providing toosl and methods to improve care - at the practice, hospital, community, state and national level. - Data Resource Center for Child and Adolescent Health (DRC)
The Data Resource Center for Child and Adolescent Health provides online access to survey data that allows users to compare state, regional, and nationwide results – plus resources and personalized assistance for interpreting and reporting findings. - Agency for Healthcare Research and Quality (AHRQ)
The lead Federal agency charged with improving the quality, safety, efficiency, and effectiveness of health care for all Americans. As one of 12 agencies within the Department of Health and Human Services, AHRQ supports health services research that will improve the quality of health care and promote evidence-based decisionmaking. - March of Dimes
An organization that supports comprehensive newborn screening for all babies in this country, regardless of their place of birth. We urge every state to screen every baby for at least 29 conditions. For each of these conditions, screening has a documented benefit to the child, and a reliable test that enables early detection is available. - National Newborn Screening and Genetics Resource
An organization that provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
