A Community of Learners:
Family-to-Family Health Information Centers Meeting
June 8 – 10, 2008: Washington, DC
At the recent meeting for Family-to-Family Health Information Centers (F2F HICs), over 70 participants came together, representing all 41 currently funded centers. A Sunday evening reception and meetings on Monday and Tuesday provided many opportunities to network, meet with the MCHB Project Officer, Diana Denboba, and learn about and share information on cultural diversity, family leadership, data, technology, and more with other centers and Family Voices staff.
The feedback we received from meeting evaluations indicates that this was a very successful meeting. Overall satisfaction was rated at 4.13 (1=Poor to 5=Excellent). The following materials are provided to help you learn more about this meeting.
Meeting Materials (general)
- Summary of a pre-meeting survey of existing F2F HICs conducted on monkey survey to help identify key areas of need.
- Meeting Agenda
- Participant List
- Booklet of Sharing Activities and Resources disseminated at Sunday evening reception to coincide with F2F HIC showcase displays.
Meeting Folder Materials
- Family Voices Brochure
- Technical Assistance Brochure
- Family-to-Family Health Information Center Brochure
- Family Voices' Diversity Statement
- Family Voices Catalog
- Family Voices 1-pager describing Family Voices work and projects
- KASA brochure
- KASA Guide to Presentations and Technical Assistance Brochure
- KASA Publications Order Form
Family Voices Reception Display Materials
- Friday's Child: June 6, 2008
- Getting to Know Title V
- KASA Youth As Leaders Manual
- Standardized Testing: What Youth with Disabilities Have to Say
Partner Materials
- MCHB National Centers Overview
- From The National Center for Cultural Competence
- And The Journey Continues. . . Achieving Cultural and Linguistic Competence in Systems Serving Children and Youth with Special Health Care Needs and their Families
- From the Catalyst Center
- Why Health Insurance is Important to Children and Youth with Special Health Care Needs
- Mandated Benefits: Essential to Children and Youth with Special Health Care Needs
- Medicaid as a Second Language: A Slightly Irreverent Guide to Common Medicaid Terms, Acronyms and Abbreviations
- Frequently Asked Questions about the Family Opportunity Act's Medicaid Buy-In Option
- Payer of Last Resort: Medical Debt and Financial Hardship among Families Raising Children and Youth with Special Health Care Needs
Session Presentations and Accompanying Materials
- Welcome and Introduction
Diana Denboba (MCHB), Sophie Arao-Nguyen & Nora Wells, Family Voices - Cultural Competence: Reaching Diverse Communities
Wendy Jones and Vivian Jackson (National Center for Cultural Competence), Mercedes Rosa (SPAN of NJ) and Trish Thomas (Family Voices) - Juntos Podemos: Together We Can! The Culturally Competent Outreach (& Support) Project Focus: Spanish-speaking Families of Children with Deaf-Blindness
- Lessons Learned/Recommendations Outline: Juntos Podemos: Together We Can!
- Everything You Wanted to Know About EHB & Reports
Hazel Booker and Diana Denboba (MCHB) - Everything you Wanted to Know
About EHB & Reports
- Applications, Performance Reports and Final Year Performance Report: Data Entry Workflow For Program Specific Forms
- Data Entry Workflow Tip Sheet
- Performance Measure #6 Data Form
- Performance Measure #7 Data Form
- Performance Measure #10 Data Form
- Performance Measure #31 Data Form
- Developing Family Leadership/Cadre of Family Leaders, Involving the Community
Session I: Liz Healey (PEAL Center), Josie Thomas (Parents Place of MD), Dawn Wardyga (RIPIN), Karen Anzola (Family Voices)(MCHB)
Session II: Julie Arel (Vermont Family Network), Cassie Johnston (Washington PAVE), Barbara Popper (Mass Family Voices), Karen Anzola (Family Voices) - Why Do Parents Get Involved?
- Families As Leaders
- Mentoring: The How, Whys And What’s Next To Bringing In And Supporting Family Leaders
- Engaging Communities to Realize the Vision of One Hundred Percent Access and Zero Health Disparities: A Culturally Competent Approach
- Supporting Pioneering Leaders as Communities of Practice; How to Rapidly Develop New Leaders in Great Numbers
- Bright Futures Family Matters Spring 2008
- Developing Distance Training
Session I: Wendy Ward (ECAC), Rachel Rodriguez (Family Voices)
Session II: Gina Pola-Money (Utah Family Voices), Peggy Curran and Rachel Rodriguez (Family Voices) - Teleconferences, Blogs, Web Workbooks
- Effective Distance Training - Handy Tips
- Creating a Classroom Website using Google Tools
- Family Voices University - an online classroom for families, family leaders, and professionals
- Webinars
- Low Cost Teleconferencing Service
- Data Tracking
Session I: Wendy Benz (Raising Special Kids), Roger Holt (PLUK), Peggy Curran (Family Voices)
Session II: Roger Holt (PLUK), Nora Wells (Family Voices) - Database Options: Dabble DB, Wild Apricot, Zoho, SalesForce.com, FV Solutions
- SalesForce.com - A Database Option for F2Fs
- FV Solutions - A Data Tracking Option
- Should Nonprofit Agencies Build or Buy a Database?
- Using Technology to Support Human Service Organizations
- A Few Good Tools: Low-Cost Constituent Databases
- Google Applications (email, calendar, shared documents, presentations, spreadsheets)
- TechFinder - A Techsoup Resource to find consultants with experience working with nonprofits
- Roundtable: Working with Title V
Mike Fraser and Librada Estrada (AMCHP) and Nora Wells (Family Voices) - First Steps for Family Leaders: Forming Collaborative Relationships with Your State Title V Program
- Title V Information System
- Getting to Know Title V
- Families in Program and Policy FiPPs MCH Report
- Families in Program and Policy FiPPs CSHCN Report
- Roundtable: Administrative Topics in Running an F2F
Molly Cole (UConn Center on Disabilities) and Rachel Rodriguez (Family Voices) - Molly’s Top Ten Strategies For Managing A Non-profit
- Resource CD on Establishing a NonProfit:: Establishing A Nonprofit Organization
- Incorporation:
- Filing The Certificate Of Incorporation Overview
- Sample Articles of Incorporation:
- Board of Directors:
- Creating A Board Of Directors And Board Committees Overview
- Sample Board Roles and Responsibilities:
- Board of Directors Statement of Responsibilities
- Board of Directors Major Policy and Oversight Functions
- Board Member Job Description
- Sample Board Committees: Typical Types of Board Committees
- Sample Board Commitment: Board of Directors Commitment to Serve
- Vision and Mission: Developing Vision And Mission Statements Overview
- Bylaws and Board Policies:
- How to Avoid Conflicts of Interest
- Establishing Bylaws And Board Policies Overview
- Sample Bylaws: Sample Bylaws - Nonprofit
- Sample Conflict of Interest Policies:
- Employee Identification Number:
- Bank account, fiscal responsibility:
- Financial Issues Overview
- Tips for Fiscal Responsiblity
- Summary Points from The Sarbanes-Oxley Act and Implications for Nonprofit Organizations
- Federal tax exemption:
- State and Local Regulations: Following State And Local Regulations Overview
- Office Space and Equipment: Finding Office Space And Obtaining Office Equipment Overview
- Staff and Personnel:
- Recruiting Staff And Preparing A Personnel Manual Overview
- Job Descriptions:
- Interview Questions:
- Employee Handbooks:
- Payroll and Insurance:
- Fundraising Plan: Developing A Fundraising Plan Overview
- Sustainability: Sustaining a Nonprofit Organization
- Roundtable: Learning/Sharing Policy Info
Julie Beckett and Janis Connallon (Family Voices) - Roundtable: Building Surveys
Peggy Curran Family Voices, Beth Dworetzky (Mass Family Voices), Donene Feist (Family Voices of North Dakota) - Roundtable: Cultural Competency – TA opportunities from the NCCC
Wendy Jones and Vivian Jackson (NCCC) - Quarterly Data Reporting to FV
Peggy Curran and Nora Wells (Family Voices) - Quarterly Data Reporting & Impact Data Collection
- Quarterly Data Reporting Instructions
- October-December 2007 F2F Data Summary
- Roll-out of MCHB Requirements for Impact Data Collection
Diana Denboba (MCHB), Francis Marshman and Orla Kennedy (JSI, by conference call), Peggy Curran and Nora Wells (Family Voices)

