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214 Family Leadership Meeting Program Book

Building Collaborations to Improve Care for Children Youth with Special Health Care Needs The Power of Partnerships Family Leadership Meeting May 18 21 2014 CONFERENCE PROGRAM BOOK The McDermott Building 500 North Capitol Street NW Washington DC 20001
Building Collaborations to Improve Care for Children Youth with Special Health Care Needs The Power of Partnerships Family Leadership Meeting May 18 21 2014 CONFERENCE PROGRAM BOOK The McDermott Building 500 North Capitol Street NW Washington DC 20001
Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs  The Power of Partnerships Fam...
Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs  The Power of Partnerships Fam...
Family Voices Leadership Meeting TABLE of CONTENTS WELCOME 2 CONFERENCE SPONSORS 3 SCHEDULE AT A GLANCE 6 SCHEDULE Sunday May 18 Welcome Reception 7 Monday May 19 Meeting Sessions 8 Monday May 19 Legislative Reception 14 Tuesday May 20 Meeting Sessions 16 Wednesday May 21 National Board of Directors Staff Strategic Planning Retreat and Board Meeting 21 GENERAL INFORMATION On Site Technical Assistance Feedback Internet Access 22 ABOUT FAMILY VOICES Our Mission Vision and Principles 24 Our Work and Projects 25 Our Partnerships with State Family Leader Organizations 27 Our Leadership 28 ONE in FIVE CAMPAIGN 30 POLLY ARANGO MENTORING INITIATIVE 31
Family Voices Leadership Meeting TABLE of CONTENTS WELCOME 2 CONFERENCE SPONSORS 3 SCHEDULE AT A GLANCE 6 SCHEDULE Sunday May 18 Welcome Reception 7 Monday May 19 Meeting Sessions 8 Monday May 19 Legislative Reception 14 Tuesday May 20 Meeting Sessions 16 Wednesday May 21 National Board of Directors Staff Strategic Planning Retreat and Board Meeting 21 GENERAL INFORMATION On Site Technical Assistance Feedback Internet Access 22 ABOUT FAMILY VOICES Our Mission Vision and Principles 24 Our Work and Projects 25 Our Partnerships with State Family Leader Organizations 27 Our Leadership 28 ONE in FIVE CAMPAIGN 30 POLLY ARANGO MENTORING INITIATIVE 31
Family Voices Leadership Meeting  TABLE of CONTENTS  WELCOME.................................................................
Family Voices Leadership Meeting  TABLE of CONTENTS  WELCOME.................................................................
The Power of Partnerships Welcome to the 2014 Family Voices Family Leadership Meeting The Power of Partnerships Family Voices is delighted to bring together family leaders colleagues and partners from across the country for three days of interactive sessions on contemporary issues that impact children and youth with special health care needs and their families We extend a warm welcome to newcomers and seasoned leaders We hope you will reach out to meet someone you don t already know learn from each other and explore our shared goals challenges and vision Family Voices expresses our appreciation to the McDermott Will Emery Law Firm for their generosity in donating their stunning conference facilities As you take in the magnificent view of our nation s Capitol we invite you to reflect upon how you will take what you learn back home to make a difference in the lives of children and youth with special health care needs and their families We are grateful to our corporate sponsors and those who have taken out ads to support this meeting The Maternal and Child Health Bureau MCHB has in large part made this program possible through their funding support of the National Center for Family Professional Partnerships and Family to Family Health Centers to participate in this meeting Family Voices applauds MCHB for their historic commitment to family leadership The program is designed to provide the most current information in health care and wellness for children and youth with special health care needs networking opportunities to meet colleagues federal officials and national partners and to make your voice heard on Capitol Hill on behalf of families of children and youth with special health care needs The program culminates on the third day with the National Family Voices Board of Directors and Staff strategic planning meeting The information gathered throughout the meetings will be used to assist the board to make informed decisions regarding the future of Family Voices Thank you for your contributions in helping us design the program completing the environmental scan the surveys from which the agenda was designed contributing information about your work and volunteering your expertise to present and facilitate sessions In these challenging times as we face threats to funding it is more important than ever for family leaders to share effective strategies to support families We celebrate your leadership family and professional partnerships and the impact our collaborative work has in creating health care systems that are responsive to families throughout the country and improve the lives of children and youth with special health care needs and their families Enjoy the meeting Molly Cole President 2 Cristine Marchand Executive Director Lynda Honberg Director of Strategic Partnerships Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships Welcome to the 2014 Family Voices Family Leadership Meeting The Power of Partnerships Family Voices is delighted to bring together family leaders colleagues and partners from across the country for three days of interactive sessions on contemporary issues that impact children and youth with special health care needs and their families We extend a warm welcome to newcomers and seasoned leaders We hope you will reach out to meet someone you don t already know learn from each other and explore our shared goals challenges and vision Family Voices expresses our appreciation to the McDermott Will Emery Law Firm for their generosity in donating their stunning conference facilities As you take in the magnificent view of our nation s Capitol we invite you to reflect upon how you will take what you learn back home to make a difference in the lives of children and youth with special health care needs and their families We are grateful to our corporate sponsors and those who have taken out ads to support this meeting The Maternal and Child Health Bureau MCHB has in large part made this program possible through their funding support of the National Center for Family Professional Partnerships and Family to Family Health Centers to participate in this meeting Family Voices applauds MCHB for their historic commitment to family leadership The program is designed to provide the most current information in health care and wellness for children and youth with special health care needs networking opportunities to meet colleagues federal officials and national partners and to make your voice heard on Capitol Hill on behalf of families of children and youth with special health care needs The program culminates on the third day with the National Family Voices Board of Directors and Staff strategic planning meeting The information gathered throughout the meetings will be used to assist the board to make informed decisions regarding the future of Family Voices Thank you for your contributions in helping us design the program completing the environmental scan the surveys from which the agenda was designed contributing information about your work and volunteering your expertise to present and facilitate sessions In these challenging times as we face threats to funding it is more important than ever for family leaders to share effective strategies to support families We celebrate your leadership family and professional partnerships and the impact our collaborative work has in creating health care systems that are responsive to families throughout the country and improve the lives of children and youth with special health care needs and their families Enjoy the meeting Molly Cole President 2 Cristine Marchand Executive Director Lynda Honberg Director of Strategic Partnerships Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  Welcome to the 2014 Family Voices Family Leadership Meeting  The Power of Partnerships  Family ...
The Power of Partnerships  Welcome to the 2014 Family Voices Family Leadership Meeting  The Power of Partnerships  Family ...
Family Voices Leadership Meeting CONFERENCE SPONSORS Family Voices gratefully acknowledges the support of the Health Resources and Services Administration Maternal and Child Health Bureau Division of Services for Children with Special Health Needs for providing funding for this meeting through cooperative agreement U40MC00149 the National Center for Family Professional Partnerships Family Voices wishes to express our sincere gratitude to the law firm of McDermott Will Emery LLP for their generosity in donating their beautiful facilities for this meeting This meeting would not have been possible without the generous support of our sponsors The Child Adolescent Health Measurement Initiative Children s Hospital Association Lake Research Partners National Center for Children s Vision Eye Health at Prevent Blindness Lucile Packard Foundation for Children s Health Hawai i MCH LEND Program Hawai i Pediatric Association Research and Education Foundation Association of Maternal Child Health Programs Community Catalyst APEX Family Voices Board of Directors Catalyst Center DeLong Lithographics Statewide Parent Advocacy Network of New Jersey Sputnik Moment National Center for Medical Home Implementation National Center for Hearing Assessment and Management National Institute for Children s Health Quality Family Voices Staff Family Voices of Indiana New Hampshire Family Voices Youth Transitions Collaborative Paul Newacheck May 18 21 2014 Washington D C 3
Family Voices Leadership Meeting CONFERENCE SPONSORS Family Voices gratefully acknowledges the support of the Health Resources and Services Administration Maternal and Child Health Bureau Division of Services for Children with Special Health Needs for providing funding for this meeting through cooperative agreement U40MC00149 the National Center for Family Professional Partnerships Family Voices wishes to express our sincere gratitude to the law firm of McDermott Will Emery LLP for their generosity in donating their beautiful facilities for this meeting This meeting would not have been possible without the generous support of our sponsors The Child Adolescent Health Measurement Initiative Children s Hospital Association Lake Research Partners National Center for Children s Vision Eye Health at Prevent Blindness Lucile Packard Foundation for Children s Health Hawai i MCH LEND Program Hawai i Pediatric Association Research and Education Foundation Association of Maternal Child Health Programs Community Catalyst APEX Family Voices Board of Directors Catalyst Center DeLong Lithographics Statewide Parent Advocacy Network of New Jersey Sputnik Moment National Center for Medical Home Implementation National Center for Hearing Assessment and Management National Institute for Children s Health Quality Family Voices Staff Family Voices of Indiana New Hampshire Family Voices Youth Transitions Collaborative Paul Newacheck May 18 21 2014 Washington D C 3
Family Voices Leadership Meeting  CONFERENCE SPONSORS Family Voices gratefully acknowledges the support of the Health Reso...
Family Voices Leadership Meeting  CONFERENCE SPONSORS Family Voices gratefully acknowledges the support of the Health Reso...
The Power of Partnerships 4 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships 4 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  4  Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs ...
The Power of Partnerships  4  Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs ...
Family Voices Leadership Meeting May 18 21 2014 Washington D C 5
Family Voices Leadership Meeting May 18 21 2014 Washington D C 5
Family Voices Leadership Meeting  May 18-21, 2014  Washington, D.C.  5
Family Voices Leadership Meeting  May 18-21, 2014  Washington, D.C.  5
The Power of Partnerships SCHEDULE AT A GLANCE Sunday May 18 Phoenix Park Hotel Powerscourt Room 4 30pm 7 00pm 5 00pm 7 30pm Registration Reception Monday May 19 McDermott Building The Capitol Room 8 00am 4 00pm 8 30am 9 00am 9 00am 9 15am 9 15am 10 30am 10 30am 10 45am 10 45am Noon Noon 1 20pm 1 20pm 1 30pm 1 30pm 3 30pm 3 30pm 3 45pm 3 45pm 5 00pm Registration Continental Breakfast Welcome Plenary Break Breakout Sessions Lunch Listening Learning Leading Break Breakout Sessions Break Breakout Sessions Monday Evening May 19 Rayburn House Office Building Room B340 6 00pm 8 00pm From the Heart Honoring Family Voices Legislative Champions Reception Tuesday May 20 McDermott Building The Capitol Room 8 00am 5 00pm 8 00am 8 50am 8 50am 9 00am 9 00am 10 30am 10 30am 10 45am 10 45am Noon Noon 1 30pm 1 30pm 1 50pm 1 50pm 2 00pm 2 00pm 2 30pm Registration Continental Breakfast Round Tables Break Plenary Break Environmental Scan Presentation and Reactor Panel Regional Breakouts Working Lunch The Inside Scoop Concluding Remarks Preparation for Family Voices Day on the Hill Wednesday May 21 McDermott Building The Capitol Room 8 00am 2 00pm 2 00pm 2 30pm 6 Board Staff Strategic Planning Meeting Closed Board of Directors Meeting Closed Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships SCHEDULE AT A GLANCE Sunday May 18 Phoenix Park Hotel Powerscourt Room 4 30pm 7 00pm 5 00pm 7 30pm Registration Reception Monday May 19 McDermott Building The Capitol Room 8 00am 4 00pm 8 30am 9 00am 9 00am 9 15am 9 15am 10 30am 10 30am 10 45am 10 45am Noon Noon 1 20pm 1 20pm 1 30pm 1 30pm 3 30pm 3 30pm 3 45pm 3 45pm 5 00pm Registration Continental Breakfast Welcome Plenary Break Breakout Sessions Lunch Listening Learning Leading Break Breakout Sessions Break Breakout Sessions Monday Evening May 19 Rayburn House Office Building Room B340 6 00pm 8 00pm From the Heart Honoring Family Voices Legislative Champions Reception Tuesday May 20 McDermott Building The Capitol Room 8 00am 5 00pm 8 00am 8 50am 8 50am 9 00am 9 00am 10 30am 10 30am 10 45am 10 45am Noon Noon 1 30pm 1 30pm 1 50pm 1 50pm 2 00pm 2 00pm 2 30pm Registration Continental Breakfast Round Tables Break Plenary Break Environmental Scan Presentation and Reactor Panel Regional Breakouts Working Lunch The Inside Scoop Concluding Remarks Preparation for Family Voices Day on the Hill Wednesday May 21 McDermott Building The Capitol Room 8 00am 2 00pm 2 00pm 2 30pm 6 Board Staff Strategic Planning Meeting Closed Board of Directors Meeting Closed Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  SCHEDULE AT A GLANCE  Sunday, May 18  Phoenix Park Hotel, Powerscourt Room 4 30pm - 7 00pm   5 ...
The Power of Partnerships  SCHEDULE AT A GLANCE  Sunday, May 18  Phoenix Park Hotel, Powerscourt Room 4 30pm - 7 00pm   5 ...
Family Voices Leadership Meeting SCHEDULE Sunday May 18 Welcome Reception Powerscourt Room 2nd floor Phoenix Park Hotel 520 North Capitol St NW Washington DC 20001 4 30pm 7 00pm Registration Open 5 00pm 7 30pm Reception All are welcome to join us for this opening reception of the 2014 Family Voices Leadership Meeting Molly Cole President Family Voices Board of Directors will provide opening remarks Participants are welcome to network with other attendees while light refreshments are served Evening dinner on your own Meet in the lobby if you wish to have dinner with others from your region www thenytc org May 18 21 2014 Washington D C 7
Family Voices Leadership Meeting SCHEDULE Sunday May 18 Welcome Reception Powerscourt Room 2nd floor Phoenix Park Hotel 520 North Capitol St NW Washington DC 20001 4 30pm 7 00pm Registration Open 5 00pm 7 30pm Reception All are welcome to join us for this opening reception of the 2014 Family Voices Leadership Meeting Molly Cole President Family Voices Board of Directors will provide opening remarks Participants are welcome to network with other attendees while light refreshments are served Evening dinner on your own Meet in the lobby if you wish to have dinner with others from your region www thenytc org May 18 21 2014 Washington D C 7
Family Voices Leadership Meeting  SCHEDULE Sunday, May 18  Welcome Reception Powerscourt Room  2nd floor  Phoenix Park Hot...
Family Voices Leadership Meeting  SCHEDULE Sunday, May 18  Welcome Reception Powerscourt Room  2nd floor  Phoenix Park Hot...
The Power of Partnerships SCHEDULE Monday May 19 Leadership Meeting The Capitol Room 9th floor McDermott Building 500 North Capitol Street NW Washington DC 20001 8 00am 4 00pm Registration Open 8 30am 9 00am Continental Breakfast 9 00am 9 15am Welcome Molly Cole President Family Voices Board of Directors Leolinda Parlin Treasurer Family Voices Board of Directors Nora Wells Co Director Family Voices National Center for Family Professional Partnerships 9 15am 10 30am PLENArY Promoting Health and Wellness through the ACA Children and youth with special health care needs are particularly vulnerable to preventable conditions such as obesity mental health conditions and secondary health issues and frequently don t get the preventive services or wellness education that could benefit them physically and emotionally This panel will discuss the range of health and wellness promotion activities funded or otherwise encouraged by the ACA how the law s incentives will shape future health polices and activities at the state local and provider levels and opportunities for families and family led organizations to inform these policies and collaborate in these activities Moderator Juno Duenas Executive Director Family Voices of California Support for Families of Children with Disabilities Speakers Jeff Levi PhD Executive Director Trust for America s Health Judith Shaw Ed D M P H R N University of Vermont Research Associate Professor Department of Pediatrics Joy Johnson Wilson Health Policy Director and Senior Federal Affairs Counsel National Conference of State Legislatures 10 30am 10 45am break 8 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships SCHEDULE Monday May 19 Leadership Meeting The Capitol Room 9th floor McDermott Building 500 North Capitol Street NW Washington DC 20001 8 00am 4 00pm Registration Open 8 30am 9 00am Continental Breakfast 9 00am 9 15am Welcome Molly Cole President Family Voices Board of Directors Leolinda Parlin Treasurer Family Voices Board of Directors Nora Wells Co Director Family Voices National Center for Family Professional Partnerships 9 15am 10 30am PLENArY Promoting Health and Wellness through the ACA Children and youth with special health care needs are particularly vulnerable to preventable conditions such as obesity mental health conditions and secondary health issues and frequently don t get the preventive services or wellness education that could benefit them physically and emotionally This panel will discuss the range of health and wellness promotion activities funded or otherwise encouraged by the ACA how the law s incentives will shape future health polices and activities at the state local and provider levels and opportunities for families and family led organizations to inform these policies and collaborate in these activities Moderator Juno Duenas Executive Director Family Voices of California Support for Families of Children with Disabilities Speakers Jeff Levi PhD Executive Director Trust for America s Health Judith Shaw Ed D M P H R N University of Vermont Research Associate Professor Department of Pediatrics Joy Johnson Wilson Health Policy Director and Senior Federal Affairs Counsel National Conference of State Legislatures 10 30am 10 45am break 8 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  SCHEDULE Monday, May 19  Leadership Meeting    The Capitol Room  9th floor  McDermott Building ...
The Power of Partnerships  SCHEDULE Monday, May 19  Leadership Meeting    The Capitol Room  9th floor  McDermott Building ...
Family Voices Leadership Meeting MONDAY PLENARY SPEAKER BIOS Jeff Levi Judith Shaw Joy Johnson Wilson Jeff Levi PhD is Executive Director of the Trust for America s Health where he leads the organization s advocacy efforts on behalf of a modernized public health system He oversees TFAH s work on a range of public health policy issues including implementation of the public health provisions of the Affordable Care Act and annual reports assessing the nation s public health preparedness investment in public health infrastructure and response to chronic diseases such as obesity In January 2011 President Obama appointed Dr Levi to serve as a member of the Advisory Group on Prevention Health Promotion and Integrative and Public Health In April 2011 Surgeon General Benjamin appointed him chair of the Advisory Group Dr Levi is also Professor of Health Policy George Washington University s School of Public Health where his research has focused on HIV AIDS Medicaid and integrating public health with the healthcare delivery system He has also served as an associate editor of the American Journal of Public Health Deputy Director of the White House Office of National AIDS Policy Dr Judith Shaw has been Executive Director of the Vermont Child Health Improvement Program VCHIP since its inception in 1999 In addition she is Principal Investigator for several federally funded projects designed to improve delivery of health care to children and holds the position of Associate Professor of Pediatrics and Nursing at the University of Vermont Dr Shaw earned her nursing degree from the Children s Hospital School of Nursing in Boston bachelor s degree from Yale University Master of Public Health degree from Boston University and doctorate in education from the University of Vermont Nationally Dr Shaw is co editor of the 2007 American Academy of Pediatrics AAP publication of Bright Futures Guidelines for Health Supervision of Infants Children and Adolescents Third Edition In 2007 she received the Director s Award from the Health Resources and Services Administration s HRSA Maternal Child Health Bureau MCHB She was a DHHS Secretary s Primary Care Health Policy Fellow in 2002 on the Board of Directors of the Academic Pediatric Association from 1999 2002 and was reelected to the board in 2009 2012 and 2014 2021 Ms Wilson is the Director of Health and Human Services Policy and Senior Federal Affairs Counsel at the National Conference of State Legislatures NCSL NCSL represents the legislatures of the 50 states its commonwealths territories and the District of Columbia As Senior Federal Affairs Counsel she assists with overall government relations and public affairs activities in the NCSL Washington Office As Director of Health and Human Services Policy she designs and implements the lobbying strategy for the conference on health and human services issues She also staffs the NCSL Task Force on Federal Health Reform Implementation Ms Wilson has been with NCSL since 1978 She took a leave of absence in 1989 to serve on the staff of the U S Bipartisan Commission on Comprehensive Health Care better known as the Pepper Commission On the Pepper Commission staff she was the liaison to groups representing state and local elected officials organized field hearings and worked on issues related to the impact of health care reform on small business She served as a non voting member of Medicaid Commission established by Secretary Mike Leavitt of the U S Department of Health and Human Services during his tenure as Secretary Ms Wilson is a member of the National Academy of Social Insurance a nonprofit nonpartisan organization made up of the nation s leading experts on social insurance May 18 21 2014 Washington D C 9
Family Voices Leadership Meeting MONDAY PLENARY SPEAKER BIOS Jeff Levi Judith Shaw Joy Johnson Wilson Jeff Levi PhD is Executive Director of the Trust for America s Health where he leads the organization s advocacy efforts on behalf of a modernized public health system He oversees TFAH s work on a range of public health policy issues including implementation of the public health provisions of the Affordable Care Act and annual reports assessing the nation s public health preparedness investment in public health infrastructure and response to chronic diseases such as obesity In January 2011 President Obama appointed Dr Levi to serve as a member of the Advisory Group on Prevention Health Promotion and Integrative and Public Health In April 2011 Surgeon General Benjamin appointed him chair of the Advisory Group Dr Levi is also Professor of Health Policy George Washington University s School of Public Health where his research has focused on HIV AIDS Medicaid and integrating public health with the healthcare delivery system He has also served as an associate editor of the American Journal of Public Health Deputy Director of the White House Office of National AIDS Policy Dr Judith Shaw has been Executive Director of the Vermont Child Health Improvement Program VCHIP since its inception in 1999 In addition she is Principal Investigator for several federally funded projects designed to improve delivery of health care to children and holds the position of Associate Professor of Pediatrics and Nursing at the University of Vermont Dr Shaw earned her nursing degree from the Children s Hospital School of Nursing in Boston bachelor s degree from Yale University Master of Public Health degree from Boston University and doctorate in education from the University of Vermont Nationally Dr Shaw is co editor of the 2007 American Academy of Pediatrics AAP publication of Bright Futures Guidelines for Health Supervision of Infants Children and Adolescents Third Edition In 2007 she received the Director s Award from the Health Resources and Services Administration s HRSA Maternal Child Health Bureau MCHB She was a DHHS Secretary s Primary Care Health Policy Fellow in 2002 on the Board of Directors of the Academic Pediatric Association from 1999 2002 and was reelected to the board in 2009 2012 and 2014 2021 Ms Wilson is the Director of Health and Human Services Policy and Senior Federal Affairs Counsel at the National Conference of State Legislatures NCSL NCSL represents the legislatures of the 50 states its commonwealths territories and the District of Columbia As Senior Federal Affairs Counsel she assists with overall government relations and public affairs activities in the NCSL Washington Office As Director of Health and Human Services Policy she designs and implements the lobbying strategy for the conference on health and human services issues She also staffs the NCSL Task Force on Federal Health Reform Implementation Ms Wilson has been with NCSL since 1978 She took a leave of absence in 1989 to serve on the staff of the U S Bipartisan Commission on Comprehensive Health Care better known as the Pepper Commission On the Pepper Commission staff she was the liaison to groups representing state and local elected officials organized field hearings and worked on issues related to the impact of health care reform on small business She served as a non voting member of Medicaid Commission established by Secretary Mike Leavitt of the U S Department of Health and Human Services during his tenure as Secretary Ms Wilson is a member of the National Academy of Social Insurance a nonprofit nonpartisan organization made up of the nation s leading experts on social insurance May 18 21 2014 Washington D C 9
Family Voices Leadership Meeting  MONDAY PLENARY SPEAKER BIOS  Jeff Levi  Judith Shaw  Joy Johnson Wilson  Jeff Levi, PhD,...
Family Voices Leadership Meeting  MONDAY PLENARY SPEAKER BIOS  Jeff Levi  Judith Shaw  Joy Johnson Wilson  Jeff Levi, PhD,...
The Power of Partnerships 10 45am Noon breakout sessions Choose one Health Literacy Helping Families Navigate Health Insurance In this changing health insurance climate families particularly underserved families from diverse populations do not always have adequate information or understand how to access health insurance This workshop will provide an overview and requirements for health literacy within the context of cultural and linguistic competence It will be followed by presentations from family organizations that serve as ACA navigators on strategies and approaches to making health insurance information more accessible to diverse populations and building the health insurance literacy of underserved families Speakers Tawara Goode Assistant Professor Director National Center for Cultural Competence Georgetown University Center for Child Human Development Wendy Jones Director Children Youth with Special Healthcare Needs Project National Center for Cultural Competence Georgetown University Center for Child Human Development Doreen Hodges Executive Director Family Voices of the District of Columbia Sitara Nayak Director of Support Services Parent to Parent of Georgia Measuring Family Engagement Re envisioning MCH 3 0 MCH is re envisioning their guidance for State Title V programs including how they accomplish and measure family engagement partnership with the diverse families that they serve This session will provide information on measuring and reporting on partnership with families within Title V programs changes to the National Survey of Children s Health on family satisfaction as they relate to this measurement and information on the Family Voices Family Centered Care Assessment FCCA Tool as a vehicle for measuring family centered care between a family and a provider Approaches and opportunities for how family leaders can participate in measurement at the national and state level will be discussed Speakers Kathleen Watters MA Public Health Analyst Division of State and Community Health MCHB Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Susan Colburn State Parent Consultant at Children s Rehabilitation Service in Alabama and Co Director Family Voices of Alabama Inc Deepa Srinivasavaradan Family Resource Specialist Statewide Parent Advocacy Network of New Jersey Developing Partnerships to Advance Health Care Financing for Children While the ACA includes important protections for CYSHCN strategies to close benefit gaps and pay for additional services are still needed Medicaid buy in programs can help reduce problems of inadequate insurance Section 2703 the Medicaid Health Home provision of the ACA gives states an opportunity to create a state plan amendment that provides a mechanism for reimbursing services often not covered by primary insurance The Catalyst Center will provide content expertise about these two mechanisms for improving financing of care and coverage for CYSHCN Family leaders will provide examples of partnerships that helped to implement these strategies in their states Speakers Meg Comeau MHA Co Principal Investigator The Catalyst Center Boston University School of Public Health Laura Warren Executive Director Texas Parent to Parent Cathy Hickey M ED Project Coordinator Massachusetts Family Voices at the Federation for Children with Special Needs 10 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships 10 45am Noon breakout sessions Choose one Health Literacy Helping Families Navigate Health Insurance In this changing health insurance climate families particularly underserved families from diverse populations do not always have adequate information or understand how to access health insurance This workshop will provide an overview and requirements for health literacy within the context of cultural and linguistic competence It will be followed by presentations from family organizations that serve as ACA navigators on strategies and approaches to making health insurance information more accessible to diverse populations and building the health insurance literacy of underserved families Speakers Tawara Goode Assistant Professor Director National Center for Cultural Competence Georgetown University Center for Child Human Development Wendy Jones Director Children Youth with Special Healthcare Needs Project National Center for Cultural Competence Georgetown University Center for Child Human Development Doreen Hodges Executive Director Family Voices of the District of Columbia Sitara Nayak Director of Support Services Parent to Parent of Georgia Measuring Family Engagement Re envisioning MCH 3 0 MCH is re envisioning their guidance for State Title V programs including how they accomplish and measure family engagement partnership with the diverse families that they serve This session will provide information on measuring and reporting on partnership with families within Title V programs changes to the National Survey of Children s Health on family satisfaction as they relate to this measurement and information on the Family Voices Family Centered Care Assessment FCCA Tool as a vehicle for measuring family centered care between a family and a provider Approaches and opportunities for how family leaders can participate in measurement at the national and state level will be discussed Speakers Kathleen Watters MA Public Health Analyst Division of State and Community Health MCHB Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Susan Colburn State Parent Consultant at Children s Rehabilitation Service in Alabama and Co Director Family Voices of Alabama Inc Deepa Srinivasavaradan Family Resource Specialist Statewide Parent Advocacy Network of New Jersey Developing Partnerships to Advance Health Care Financing for Children While the ACA includes important protections for CYSHCN strategies to close benefit gaps and pay for additional services are still needed Medicaid buy in programs can help reduce problems of inadequate insurance Section 2703 the Medicaid Health Home provision of the ACA gives states an opportunity to create a state plan amendment that provides a mechanism for reimbursing services often not covered by primary insurance The Catalyst Center will provide content expertise about these two mechanisms for improving financing of care and coverage for CYSHCN Family leaders will provide examples of partnerships that helped to implement these strategies in their states Speakers Meg Comeau MHA Co Principal Investigator The Catalyst Center Boston University School of Public Health Laura Warren Executive Director Texas Parent to Parent Cathy Hickey M ED Project Coordinator Massachusetts Family Voices at the Federation for Children with Special Needs 10 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships    10 45am - Noon breakout sessions  Choose one    Health Literacy   Helping Families Navigate H...
The Power of Partnerships    10 45am - Noon breakout sessions  Choose one    Health Literacy   Helping Families Navigate H...
Family Voices Leadership Meeting Noon 1 20pm LUNCH LISTENING LEARNING LEADING Introductions Lynda Honberg Director of Strategic Partnerships Family Voices Welcome from NCFPP Project Officer Bonnie Strickland PhD Director Division of Services for Children with Special Health Needs HRSA MCHB LaQuanta Smalley MPH Program Officer Director of Family Professional Partnerships Division of Services for Children with Special Health Needs HRSA MCHB Polly Arango Mentoring Initiative Cristine Marchand Executive Director Family Voices New Initiatives Diana Autin National Field Co Coordinator Family Voices Mary Jo Paladino National Field Co Coordinator Family Voices Concluding Remarks Beverly Baker Co Director Family Voices National Center for Family Professional Partnership 1 20pm 1 30pm break Because we all should have a say in decisions that affect our health http www communitycatalyst org May 18 21 2014 Washington D C 11
Family Voices Leadership Meeting Noon 1 20pm LUNCH LISTENING LEARNING LEADING Introductions Lynda Honberg Director of Strategic Partnerships Family Voices Welcome from NCFPP Project Officer Bonnie Strickland PhD Director Division of Services for Children with Special Health Needs HRSA MCHB LaQuanta Smalley MPH Program Officer Director of Family Professional Partnerships Division of Services for Children with Special Health Needs HRSA MCHB Polly Arango Mentoring Initiative Cristine Marchand Executive Director Family Voices New Initiatives Diana Autin National Field Co Coordinator Family Voices Mary Jo Paladino National Field Co Coordinator Family Voices Concluding Remarks Beverly Baker Co Director Family Voices National Center for Family Professional Partnership 1 20pm 1 30pm break Because we all should have a say in decisions that affect our health http www communitycatalyst org May 18 21 2014 Washington D C 11
Family Voices Leadership Meeting    Noon - 1 20pm LUNCH - LISTENING - LEARNING - LEADING  Introductions   Lynda Honberg, D...
Family Voices Leadership Meeting    Noon - 1 20pm LUNCH - LISTENING - LEARNING - LEADING  Introductions   Lynda Honberg, D...
The Power of Partnerships 1 30pm 3 30pm breakout sessions Choose one Tips Tools to Sustain the Work of Family Organizations Show Me the Money Family organizations frequently struggle with too much work and not enough funds This workshop will provide tips and tools for securing funds needed to do the work of family organizations including fee for service special events and grant funding that is outside of the box Participants will be encouraged to share ideas from their own successful fundraising Speakers Diana Autin Executive Co Director Statewide Parent Advocacy Network of New Jersey Heather Pike Administrative Director Oklahoma Family Network Partnering with Non Traditional Partners to Reach and Serve Diverse Families Family organizations recognize that reaching the families who most need support is often the biggest hurdle to providing support services This session will provide resources information and skills that will help you build partnerships with non traditional partners in order to reach those families Join us for this active panel presentation from four states who have partnered with organizations that do not typically focus on CYSHCN such as community health centers child welfare agencies childcare organizations and others Moderator Jackie Richards Executive Director Family Connection of South Carolina Speakers Todd Rundle Program Manager for Family Services West Virginia Family to Family Health Information Center Nina Baker Health Information Coordinator PTI Nebraska Jane St John Community Inclusion Specialist Missouri Family to Family UMKC Institute for Human Development Marilyn Ruiz Project Director Family Network on Disabilities Florida Creating Systems Change and Policy Advocacy This session will focus on how family leaders can promote key partnerships and coalitions in their states to build effective policies for families of CYSHCN Examples discussed will include a statewide coalition of multiple stakeholders with specific examples of accomplishments and strategies a new national consensus document that provides guidance and highlights tools for change and a campaign on systems improvement being undertaken by a national provider association Moderator Lynda Honberg Director of Strategic Partnerships Family Voices Speakers Josie Thomas Executive Director Parents Place of Maryland Aimee Osman Director of Policy Analysis Children s Hospital Association Ed Schor Senior Vice President Programs and Partnerships Lucile Packard Foundation 3 30pm 3 45pm break 12 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships 1 30pm 3 30pm breakout sessions Choose one Tips Tools to Sustain the Work of Family Organizations Show Me the Money Family organizations frequently struggle with too much work and not enough funds This workshop will provide tips and tools for securing funds needed to do the work of family organizations including fee for service special events and grant funding that is outside of the box Participants will be encouraged to share ideas from their own successful fundraising Speakers Diana Autin Executive Co Director Statewide Parent Advocacy Network of New Jersey Heather Pike Administrative Director Oklahoma Family Network Partnering with Non Traditional Partners to Reach and Serve Diverse Families Family organizations recognize that reaching the families who most need support is often the biggest hurdle to providing support services This session will provide resources information and skills that will help you build partnerships with non traditional partners in order to reach those families Join us for this active panel presentation from four states who have partnered with organizations that do not typically focus on CYSHCN such as community health centers child welfare agencies childcare organizations and others Moderator Jackie Richards Executive Director Family Connection of South Carolina Speakers Todd Rundle Program Manager for Family Services West Virginia Family to Family Health Information Center Nina Baker Health Information Coordinator PTI Nebraska Jane St John Community Inclusion Specialist Missouri Family to Family UMKC Institute for Human Development Marilyn Ruiz Project Director Family Network on Disabilities Florida Creating Systems Change and Policy Advocacy This session will focus on how family leaders can promote key partnerships and coalitions in their states to build effective policies for families of CYSHCN Examples discussed will include a statewide coalition of multiple stakeholders with specific examples of accomplishments and strategies a new national consensus document that provides guidance and highlights tools for change and a campaign on systems improvement being undertaken by a national provider association Moderator Lynda Honberg Director of Strategic Partnerships Family Voices Speakers Josie Thomas Executive Director Parents Place of Maryland Aimee Osman Director of Policy Analysis Children s Hospital Association Ed Schor Senior Vice President Programs and Partnerships Lucile Packard Foundation 3 30pm 3 45pm break 12 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships    1 30pm - 3 30pm breakout sessions  Choose one    Tips   Tools to Sustain the Work of Family O...
The Power of Partnerships    1 30pm - 3 30pm breakout sessions  Choose one    Tips   Tools to Sustain the Work of Family O...
Family Voices Leadership Meeting 3 45pm 5 00pm breakout sessions Choose one F2F Data Tracking impact making an impact This workshop will provide information sharing on two key aspects of F2F data impact data collection and potential uses of the data collected F2F leaders will share their tips and strategies to successfully obtain impact data including the use of surveys This workshop will provide an opportunity to discuss ideas for potential uses of data within states and in other ways and additional data tracked such as data on ACA MCHB Project Officer will provide perspectives from the federal level Moderator Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Speakers Martha Jean Madison Co Director New Hampshire Family Voices Lisa Maynes M Ed Associate Director of Family Support Vermont Family Network Dana Yarbrough Director Center for Family Involvement Virginia LaQuanta Smalley MPH Project Officer Division of Services for Children with Special Health Needs Peggy Curran Data Coordinator Family Voices Health and Wellness Promotion for Families Family Wisdom and Best Practices Health and wellness H W is a universal aim across all cultures It is as important for CYSHCN as it is for the general population IMPACT s family led focus groups demonstrated enthusiasm and thirst for such information This workshop will provide insights from states on health and wellness in their homes and communities Sharing information provides a powerful platform for states to build H W promotion into their programs and align with future funding possibilities Speakers Leslie Carroll Director Project IMPACT Family Voices Mercedes Rosa Director NJ Family to Family Health Information Center Director Innovative Evidence Based Practices Project Statewide Parent Advocacy Network of New Jersey Marlyn Wells Program Coordinator North Carolina Family Voices Exceptional Children s Assistance Center Melissa Vickers IMPACT Project Coordinator Family Voices Reaching Families Where they Are Social Media 101 Families and the professionals who serve them are seeking information via a wide variety of social media Join us for an overview of platforms and how to use them to support your efforts This session will help you plan a next step to start expand or fine tune your social media efforts Speakers Rylin Rodgers Director Family Voices of Indiana Jessica Adair Digital Strategy Manager Young Invincibles May 18 21 2014 Washington D C 13
Family Voices Leadership Meeting 3 45pm 5 00pm breakout sessions Choose one F2F Data Tracking impact making an impact This workshop will provide information sharing on two key aspects of F2F data impact data collection and potential uses of the data collected F2F leaders will share their tips and strategies to successfully obtain impact data including the use of surveys This workshop will provide an opportunity to discuss ideas for potential uses of data within states and in other ways and additional data tracked such as data on ACA MCHB Project Officer will provide perspectives from the federal level Moderator Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Speakers Martha Jean Madison Co Director New Hampshire Family Voices Lisa Maynes M Ed Associate Director of Family Support Vermont Family Network Dana Yarbrough Director Center for Family Involvement Virginia LaQuanta Smalley MPH Project Officer Division of Services for Children with Special Health Needs Peggy Curran Data Coordinator Family Voices Health and Wellness Promotion for Families Family Wisdom and Best Practices Health and wellness H W is a universal aim across all cultures It is as important for CYSHCN as it is for the general population IMPACT s family led focus groups demonstrated enthusiasm and thirst for such information This workshop will provide insights from states on health and wellness in their homes and communities Sharing information provides a powerful platform for states to build H W promotion into their programs and align with future funding possibilities Speakers Leslie Carroll Director Project IMPACT Family Voices Mercedes Rosa Director NJ Family to Family Health Information Center Director Innovative Evidence Based Practices Project Statewide Parent Advocacy Network of New Jersey Marlyn Wells Program Coordinator North Carolina Family Voices Exceptional Children s Assistance Center Melissa Vickers IMPACT Project Coordinator Family Voices Reaching Families Where they Are Social Media 101 Families and the professionals who serve them are seeking information via a wide variety of social media Join us for an overview of platforms and how to use them to support your efforts This session will help you plan a next step to start expand or fine tune your social media efforts Speakers Rylin Rodgers Director Family Voices of Indiana Jessica Adair Digital Strategy Manager Young Invincibles May 18 21 2014 Washington D C 13
Family Voices Leadership Meeting    3 45pm - 5 00pm breakout sessions  Choose one    F2F Data Tracking impact - making an ...
Family Voices Leadership Meeting    3 45pm - 5 00pm breakout sessions  Choose one    F2F Data Tracking impact - making an ...
The Power of Partnerships SCHEDULE Monday Evening May 19 6 00 8 00pm From the Heart Honoring Family Voices Legislative Champions Reception Rayburn House Office Building Room B340 Washington DC 20510 Please join us in honoring Congressional Champions who keep families at the center of children s health care These champions have led the way to ensure families receive assistance support and information to make informed decisions for quality health care for their children Enjoy light refreshments while learning more about the work of these leaders who have made a difference to families of children and youth with special health care needs Meet legislative staff and share your knowledge of the successes and challenges experienced by families in your state Family Voices gratefully acknowedges the reception supporters Sponsors 14 The Honorable Michelle Lujan Grisham U S House of Representatives New Mexico Child and Adolescent Health Measurement Initiative CAHMI The Children s Hospital Association Association of Maternal and Child Health Programs AMCHP Contributor Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships SCHEDULE Monday Evening May 19 6 00 8 00pm From the Heart Honoring Family Voices Legislative Champions Reception Rayburn House Office Building Room B340 Washington DC 20510 Please join us in honoring Congressional Champions who keep families at the center of children s health care These champions have led the way to ensure families receive assistance support and information to make informed decisions for quality health care for their children Enjoy light refreshments while learning more about the work of these leaders who have made a difference to families of children and youth with special health care needs Meet legislative staff and share your knowledge of the successes and challenges experienced by families in your state Family Voices gratefully acknowedges the reception supporters Sponsors 14 The Honorable Michelle Lujan Grisham U S House of Representatives New Mexico Child and Adolescent Health Measurement Initiative CAHMI The Children s Hospital Association Association of Maternal and Child Health Programs AMCHP Contributor Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  SCHEDULE Monday Evening, May 19, 6 00-8 00pm From the Heart - Honoring Family Voices Legislativ...
The Power of Partnerships  SCHEDULE Monday Evening, May 19, 6 00-8 00pm From the Heart - Honoring Family Voices Legislativ...
Family Voices Leadership Meeting The Honorable Tom Harken U S Senate Iowa The Honorable Robert Menendez U S Senate New Jersey The Honorable Henry Waxman U S House of Representatives California May 18 21 2014 The Honorable Orrin Hatch U S Senate Utah The Honorable Frank Pallone Jr U S House of Representatives New Jersey The Honorable Ron Wyden U S Senate Oregon Washington D C 15
Family Voices Leadership Meeting The Honorable Tom Harken U S Senate Iowa The Honorable Robert Menendez U S Senate New Jersey The Honorable Henry Waxman U S House of Representatives California May 18 21 2014 The Honorable Orrin Hatch U S Senate Utah The Honorable Frank Pallone Jr U S House of Representatives New Jersey The Honorable Ron Wyden U S Senate Oregon Washington D C 15
Family Voices Leadership Meeting  The Honorable Tom Harken U.S. Senate, Iowa  The Honorable Robert Menendez U.S. Senate, N...
Family Voices Leadership Meeting  The Honorable Tom Harken U.S. Senate, Iowa  The Honorable Robert Menendez U.S. Senate, N...
The Power of Partnerships SCHEDULE Tuesday May 20 Leadership Meeting The Capitol Room 9th floor McDermott Building 500 North Capitol Street 8 00am 5 00pm Registration Open 8 00am 8 50am Continental Breakfast round tables Health Wellness Self Care for Staff Breathe This is your hour to explore ways to take care of your health and well being As parents and family leaders our responsibilities require much of us physically and emotionally Our run is a long distance one not a sprint So let s join together to share ideas for rest renewal regeneration and inspiration Facilitators Leslie Carroll Director Project IMPACT Family Voices Carmina Cirioli Co Executive Director PATH Parent to Parent Family Voices of Connecticut Staff Development Keeping Up With Changes We will use this opportunity to discuss strategies for keeping staff up to date in a changing health care environment Facilitators Faye Manaster Family to Family Director Family Voices of Illinois Rhiannon Traigle Executive Director Bayou Land Families Helping Families Louisiana Rural Families Joys and Challenges Living in a rural or frontier area presents unique challenges for families of CYSHN We welcome family leaders from rural frontier communities to discuss creative ways to help families overcome those challenges The objective of this roundtable is to draft a family tip sheet of parent to parent advice for raising CYSHN in rural communities Bring us your best ideas and resources Facilitators Tamara Bakewell Project Coordinator Oregon Family to Family Health Information Center Amy Westfall Program Manager Stone Soup Group Alaska 16 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships SCHEDULE Tuesday May 20 Leadership Meeting The Capitol Room 9th floor McDermott Building 500 North Capitol Street 8 00am 5 00pm Registration Open 8 00am 8 50am Continental Breakfast round tables Health Wellness Self Care for Staff Breathe This is your hour to explore ways to take care of your health and well being As parents and family leaders our responsibilities require much of us physically and emotionally Our run is a long distance one not a sprint So let s join together to share ideas for rest renewal regeneration and inspiration Facilitators Leslie Carroll Director Project IMPACT Family Voices Carmina Cirioli Co Executive Director PATH Parent to Parent Family Voices of Connecticut Staff Development Keeping Up With Changes We will use this opportunity to discuss strategies for keeping staff up to date in a changing health care environment Facilitators Faye Manaster Family to Family Director Family Voices of Illinois Rhiannon Traigle Executive Director Bayou Land Families Helping Families Louisiana Rural Families Joys and Challenges Living in a rural or frontier area presents unique challenges for families of CYSHN We welcome family leaders from rural frontier communities to discuss creative ways to help families overcome those challenges The objective of this roundtable is to draft a family tip sheet of parent to parent advice for raising CYSHN in rural communities Bring us your best ideas and resources Facilitators Tamara Bakewell Project Coordinator Oregon Family to Family Health Information Center Amy Westfall Program Manager Stone Soup Group Alaska 16 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  SCHEDULE Tuesday, May 20  Leadership Meeting    The Capitol Room  9th floor  McDermott Building...
The Power of Partnerships  SCHEDULE Tuesday, May 20  Leadership Meeting    The Capitol Room  9th floor  McDermott Building...
Family Voices Leadership Meeting The National Center for Children s Vision and Eye Health NCCVEH a project of Prevent Blindness Join us to learn about eye health resources available to families and the professionals who serve them the latest information on the vision Essential Health Benefit included in the Affordable Care Act and to tell us what is happening in your state to support eye health for children Facilitators Kira Baldonado Director National Center for Children s Vision and Eye Health Alison Manson Director of Governmental Affairs for Prevent Blindness Melissa Vickers IMPACT Project Coordinator Family Voices Family Centered Care Assessment FCCA Families have much to contribute to the understanding and measurement of family centered care Come learn more about this new quality assessment tool based on families experiences that is ready to be used in provider settings Facilitator Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Let s Talk Nuts and Bolts of Social Media Have more questions after the social media session or didn t get to attend at all Join this roundtable discussion to hear what others are doing and pick up tips to expand your social media presence Facilitators Rylin Rodgers Director Family Voices Indiana Steve Viehweg President Family Voices Indiana http www infanthearing org May 18 21 2014 Washington D C 17
Family Voices Leadership Meeting The National Center for Children s Vision and Eye Health NCCVEH a project of Prevent Blindness Join us to learn about eye health resources available to families and the professionals who serve them the latest information on the vision Essential Health Benefit included in the Affordable Care Act and to tell us what is happening in your state to support eye health for children Facilitators Kira Baldonado Director National Center for Children s Vision and Eye Health Alison Manson Director of Governmental Affairs for Prevent Blindness Melissa Vickers IMPACT Project Coordinator Family Voices Family Centered Care Assessment FCCA Families have much to contribute to the understanding and measurement of family centered care Come learn more about this new quality assessment tool based on families experiences that is ready to be used in provider settings Facilitator Nora Wells Co Director Family Voices National Center for Family Professional Partnerships Let s Talk Nuts and Bolts of Social Media Have more questions after the social media session or didn t get to attend at all Join this roundtable discussion to hear what others are doing and pick up tips to expand your social media presence Facilitators Rylin Rodgers Director Family Voices Indiana Steve Viehweg President Family Voices Indiana http www infanthearing org May 18 21 2014 Washington D C 17
Family Voices Leadership Meeting    The National Center for Children   s Vision and Eye Health  NCCVEH , a project of Prev...
Family Voices Leadership Meeting    The National Center for Children   s Vision and Eye Health  NCCVEH , a project of Prev...
The Power of Partnerships 9 00am 10 30am PLENARY Envisioning the Future for Children with Special Health Care Needs Their Families Positioning Family Leadership at the State and National Levels What is the future going to look like for children and youth with special health care needs and their families Three national experts will address this question from various perspectives to assist our national and state organizations position themselves to be viable and responsive to meet future needs young families youth leadership cultural diversity and state perspective Welcome Introductions Cristine Marchand Executive Director Family Voices Moderator Leolinda Parlin Treasurer Family Voices Board of Directors Speakers Michael Lu MD MS MPH Associate Administrator Maternal and Child Health Health Resources and Services Administration U S Department of Health and Human Services Sharon Lewis Acting Principal Deputy Administrator Administration for Community Living Commissioner Administration on Intellectual and Developmental Disabilities Celinda Lake President Lake Research Partners Sponsor Hawai i Pediatric Association Research and Education Foundation 10 30am 10 45am break 10 45am Noon Environmental Scan presentation and reactor panel challenges and opportunities Family Voices engaged multiple perspectives from state and national stakeholders to provide guidance on critical issues facing children and youth with special health care needs and their families state challenges and the Family Voices organizational structure These results will assist states in meeting future challenges and guide the National Family Voices Board s strategic planning efforts A reactor panel has been selected to highlight key findings as seen from the future generation youth leader young families state perspective and cultural and linguistic diversity Presenter Molly Cole President Family Voices Board of Directors Moderator Cristine Marchand Executive Director Family Voices Reactor Panel Tara Townsend Family Support Coordinator Rhode Island Parent Information Network Family Leader Perspective Jennifer Thomas Youth Development Specialist National Collaboration on Workforce and Disability Institute for Educational Leadership Youth Perspective Wendy Jones Research Instructor and Director Children Youth with Special Health Care Needs Project National Center for Cultural Competence Georgetown University Center for Child Human Development Cultural and Linguistic Diversity Melanie Kaufmann Executive Director Family TIES of Nevada State Perspective 18 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships 9 00am 10 30am PLENARY Envisioning the Future for Children with Special Health Care Needs Their Families Positioning Family Leadership at the State and National Levels What is the future going to look like for children and youth with special health care needs and their families Three national experts will address this question from various perspectives to assist our national and state organizations position themselves to be viable and responsive to meet future needs young families youth leadership cultural diversity and state perspective Welcome Introductions Cristine Marchand Executive Director Family Voices Moderator Leolinda Parlin Treasurer Family Voices Board of Directors Speakers Michael Lu MD MS MPH Associate Administrator Maternal and Child Health Health Resources and Services Administration U S Department of Health and Human Services Sharon Lewis Acting Principal Deputy Administrator Administration for Community Living Commissioner Administration on Intellectual and Developmental Disabilities Celinda Lake President Lake Research Partners Sponsor Hawai i Pediatric Association Research and Education Foundation 10 30am 10 45am break 10 45am Noon Environmental Scan presentation and reactor panel challenges and opportunities Family Voices engaged multiple perspectives from state and national stakeholders to provide guidance on critical issues facing children and youth with special health care needs and their families state challenges and the Family Voices organizational structure These results will assist states in meeting future challenges and guide the National Family Voices Board s strategic planning efforts A reactor panel has been selected to highlight key findings as seen from the future generation youth leader young families state perspective and cultural and linguistic diversity Presenter Molly Cole President Family Voices Board of Directors Moderator Cristine Marchand Executive Director Family Voices Reactor Panel Tara Townsend Family Support Coordinator Rhode Island Parent Information Network Family Leader Perspective Jennifer Thomas Youth Development Specialist National Collaboration on Workforce and Disability Institute for Educational Leadership Youth Perspective Wendy Jones Research Instructor and Director Children Youth with Special Health Care Needs Project National Center for Cultural Competence Georgetown University Center for Child Human Development Cultural and Linguistic Diversity Melanie Kaufmann Executive Director Family TIES of Nevada State Perspective 18 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships    9 00am - 10 30am PLENARY  Envisioning the Future for Children with Special Health Care Needs ...
The Power of Partnerships    9 00am - 10 30am PLENARY  Envisioning the Future for Children with Special Health Care Needs ...
Family Voices Leadership Meeting TUESDAY PLENARY SPEAKER BIOS Michael Lu MD MS MPH Sharon Lewis Celinda Lake Dr Lu is Associate Administrator Maternal and Child Health Health Resources and Services Administration U S Department of Health and Human Services Dr Lu joined HRSA from the University of California Los Angeles Schools of Medicine and Public Health where he was associate professor of obstetrics gynecology and public health Dr Lu brings years of experience in MCH research practice and policy to his post at HRSA Prior to his appointment to head up MCHB Dr Lu chaired the Secretary s Advisory Committee on Infant Mortality He has served on two Institute of Medicine IOM Committees Committee on Understanding Premature Birth and Assuring Healthy Outcomes and Committee to Reexamine IOM Pregnancy Weight Guidelines and the Centers for Disease Control and Prevention Select Panel on Preconception Care While at UCLA Dr Lu was a lead investigator for the National Children s Study He also led a project to monitor and improve the quality and safety of maternity care in California He was best known for his research on racial ethnic disparities in birth outcomes and his visionary leadership on life course Dr Lu taught obstetrics and gynecology at the David Geffen School of Medicine at UCLA and maternal and child health at UCLA School of Public Health He has received numerous awards for his teaching including Excellence in Teaching Awards from the Association of Professors of Gynecology and Obstetrics As an obstetrician Dr Lu has attended over a thousand births and has been voted one of the Best Doctors in America since 2005 Ms Lewis is Acting Principal Deputy Administrator Administration for Community Living Commissioner Administration on Intellectual and Developmental Disabilities Sharon Lewis serves in the dual roles of Acting Principal Deputy Administrator of the Administration for Community Living and Commissioner of the Administration on Intellectual and Developmental Disabilities AIDD within the Administration for Community Living From March 2010 to April 2012 Ms Lewis served as the Commissioner of the Administration on Developmental Disabilities Prior to her appointment as Commissioner she served as the Senior Disability Policy Advisor to U S House Committee on Education Labor advising members of the Committee on legislative strategy and disability related policy issues in education employment and healthcare and as a Kennedy Public Policy Fellow for U S Senate Subcommittee on Children Families Sharon is the recipient of numerous awards including the 2010 Distinguished Leadership in National Disability Policy Award and the Consortium for Citizens with Disabilities Chairman s Award In Oregon Sharon worked on public policy for the Oregon Developmental Disabilities Coalition and for The Arc She served as co chair of the Oregon Family Action Coalition Team founded DisabilityCompass org and managed the Oregon Partners in Policymaking Program Sharon is a parent to three daughters including one with disability Celinda Lake President of Lake Research Partners is a prominent pollster and political strategist with key interests in women s issues health policy changing demographics immigration and social justice Lake Research Partners is a national public opinion and political strategy research firm founded by Celinda Lake in 1995 the firm s principals are leading information and political campaign strategists serving as tacticians and senior advisors to a wide range of advocacy groups labor unions non profits government agencies companies and foundations as well as dozens of elected officials at all levels of the electoral process The firm is national in scope with offices in Washington DC New York and California and senior staff located in Washington Oregon and Virginia Non partisan clients include Aging with Dignity American Cancer Society American Lung Association Aspen Institute Center on Budget and Policy Priorities Center for Health and Health Care in Schools Community Catalyst DC Campaign to Prevent Teen Pregnancy Faith in Action Institute for Health Policy Solutions League of Women Voters Midwest Business Group on Health National Academy for State Health Policy National Assembly on School Based Health Care National Association of Public Hospitals and Health Systems National Breast Cancer Coalition National Family Caregivers Association National Hospice and Palliative Care Organization National Partnership for Women and Families New England Alliance for Children s Health Partnership to Fight Chronic Disease and many others May 18 21 2014 Washington D C 19
Family Voices Leadership Meeting TUESDAY PLENARY SPEAKER BIOS Michael Lu MD MS MPH Sharon Lewis Celinda Lake Dr Lu is Associate Administrator Maternal and Child Health Health Resources and Services Administration U S Department of Health and Human Services Dr Lu joined HRSA from the University of California Los Angeles Schools of Medicine and Public Health where he was associate professor of obstetrics gynecology and public health Dr Lu brings years of experience in MCH research practice and policy to his post at HRSA Prior to his appointment to head up MCHB Dr Lu chaired the Secretary s Advisory Committee on Infant Mortality He has served on two Institute of Medicine IOM Committees Committee on Understanding Premature Birth and Assuring Healthy Outcomes and Committee to Reexamine IOM Pregnancy Weight Guidelines and the Centers for Disease Control and Prevention Select Panel on Preconception Care While at UCLA Dr Lu was a lead investigator for the National Children s Study He also led a project to monitor and improve the quality and safety of maternity care in California He was best known for his research on racial ethnic disparities in birth outcomes and his visionary leadership on life course Dr Lu taught obstetrics and gynecology at the David Geffen School of Medicine at UCLA and maternal and child health at UCLA School of Public Health He has received numerous awards for his teaching including Excellence in Teaching Awards from the Association of Professors of Gynecology and Obstetrics As an obstetrician Dr Lu has attended over a thousand births and has been voted one of the Best Doctors in America since 2005 Ms Lewis is Acting Principal Deputy Administrator Administration for Community Living Commissioner Administration on Intellectual and Developmental Disabilities Sharon Lewis serves in the dual roles of Acting Principal Deputy Administrator of the Administration for Community Living and Commissioner of the Administration on Intellectual and Developmental Disabilities AIDD within the Administration for Community Living From March 2010 to April 2012 Ms Lewis served as the Commissioner of the Administration on Developmental Disabilities Prior to her appointment as Commissioner she served as the Senior Disability Policy Advisor to U S House Committee on Education Labor advising members of the Committee on legislative strategy and disability related policy issues in education employment and healthcare and as a Kennedy Public Policy Fellow for U S Senate Subcommittee on Children Families Sharon is the recipient of numerous awards including the 2010 Distinguished Leadership in National Disability Policy Award and the Consortium for Citizens with Disabilities Chairman s Award In Oregon Sharon worked on public policy for the Oregon Developmental Disabilities Coalition and for The Arc She served as co chair of the Oregon Family Action Coalition Team founded DisabilityCompass org and managed the Oregon Partners in Policymaking Program Sharon is a parent to three daughters including one with disability Celinda Lake President of Lake Research Partners is a prominent pollster and political strategist with key interests in women s issues health policy changing demographics immigration and social justice Lake Research Partners is a national public opinion and political strategy research firm founded by Celinda Lake in 1995 the firm s principals are leading information and political campaign strategists serving as tacticians and senior advisors to a wide range of advocacy groups labor unions non profits government agencies companies and foundations as well as dozens of elected officials at all levels of the electoral process The firm is national in scope with offices in Washington DC New York and California and senior staff located in Washington Oregon and Virginia Non partisan clients include Aging with Dignity American Cancer Society American Lung Association Aspen Institute Center on Budget and Policy Priorities Center for Health and Health Care in Schools Community Catalyst DC Campaign to Prevent Teen Pregnancy Faith in Action Institute for Health Policy Solutions League of Women Voters Midwest Business Group on Health National Academy for State Health Policy National Assembly on School Based Health Care National Association of Public Hospitals and Health Systems National Breast Cancer Coalition National Family Caregivers Association National Hospice and Palliative Care Organization National Partnership for Women and Families New England Alliance for Children s Health Partnership to Fight Chronic Disease and many others May 18 21 2014 Washington D C 19
Family Voices Leadership Meeting  TUESDAY PLENARY SPEAKER BIOS  Michael Lu, MD, MS, MPH  Sharon Lewis  Celinda Lake  Dr. L...
Family Voices Leadership Meeting  TUESDAY PLENARY SPEAKER BIOS  Michael Lu, MD, MS, MPH  Sharon Lewis  Celinda Lake  Dr. L...
The Power of Partnerships Noon 1 30pm Regional breakouts working lunch This is an opportunity to begin planning in your state and region Please select 2 3 issues findings from the environmental scan relevant for your region develop ways your region can address the issues and decide how you will follow up with one another Please summarize your recommendations on the note cards provided at your table for the benefit of the FV National Board of Directors Moderator Marcia O Malley Vice President Family Voices Board of Directors 1 30pm 1 50pm the inside scoop This session will provide you with more insight into the politics and processes for federal health policy as it impacts children with special health care needs especially regarding access to oral health You ll gain an insider s view on the congressional environment and tips on going to the Hill in preparation for our visits to members of Congress Ms Sealander is a registered lobbyist Speaker Karen Sealander Legislative Counsel McDermott Will and Emery LLP Ms Sealander is legislative counsel in the law firm of McDermott Will Emery LLP and is based in the Firm s Washington D C office A member of the Firm s Government Strategies practice Karen focuses her practice exclusively in the health sector Ms Sealander has more than two decades of experience representing and counseling health care providers health insurance plans integrated health care delivery systems professional associations of health care providers and others in the health sector on legislative regulatory and legal matters She worked extensively on the Patient Protection and Affordable Care Act legislation enacted in March 2010 which reformed the nation s health care delivery system 1 50pm 2 00pm concluding remarks Marcia O Malley Vice President Family Voices Board of Directors 2 00pm 2 30pm Preparation for Family Voices Day on the Hill Lynda Honberg Director of Strategic Partnerships Family Voices Brooke Lehmann and Janis Guerney Policy Team Family Voices 20 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships Noon 1 30pm Regional breakouts working lunch This is an opportunity to begin planning in your state and region Please select 2 3 issues findings from the environmental scan relevant for your region develop ways your region can address the issues and decide how you will follow up with one another Please summarize your recommendations on the note cards provided at your table for the benefit of the FV National Board of Directors Moderator Marcia O Malley Vice President Family Voices Board of Directors 1 30pm 1 50pm the inside scoop This session will provide you with more insight into the politics and processes for federal health policy as it impacts children with special health care needs especially regarding access to oral health You ll gain an insider s view on the congressional environment and tips on going to the Hill in preparation for our visits to members of Congress Ms Sealander is a registered lobbyist Speaker Karen Sealander Legislative Counsel McDermott Will and Emery LLP Ms Sealander is legislative counsel in the law firm of McDermott Will Emery LLP and is based in the Firm s Washington D C office A member of the Firm s Government Strategies practice Karen focuses her practice exclusively in the health sector Ms Sealander has more than two decades of experience representing and counseling health care providers health insurance plans integrated health care delivery systems professional associations of health care providers and others in the health sector on legislative regulatory and legal matters She worked extensively on the Patient Protection and Affordable Care Act legislation enacted in March 2010 which reformed the nation s health care delivery system 1 50pm 2 00pm concluding remarks Marcia O Malley Vice President Family Voices Board of Directors 2 00pm 2 30pm Preparation for Family Voices Day on the Hill Lynda Honberg Director of Strategic Partnerships Family Voices Brooke Lehmann and Janis Guerney Policy Team Family Voices 20 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships    Noon - 1 30pm Regional breakouts working lunch This is an opportunity to begin planning in yo...
The Power of Partnerships    Noon - 1 30pm Regional breakouts working lunch This is an opportunity to begin planning in yo...
Family Voices Leadership Meeting SCHEDULE Wednesday May 21 Board Staff Retreat The Capitol Room 9th floor McDermott Building 500 North Capitol Street 8 00am 2 00pm Board Staff Strategic Planning Meeting Closed 2 00pm 2 30pm Board of Directors Meeting Closed The Family Voices Staff thanks all of the family leaders family members and professionals for the work you do everyday realizing our mission family centered care for all children and youth with special health care needs and or disabilities You are Family Voices May 18 21 2014 Washington D C 21
Family Voices Leadership Meeting SCHEDULE Wednesday May 21 Board Staff Retreat The Capitol Room 9th floor McDermott Building 500 North Capitol Street 8 00am 2 00pm Board Staff Strategic Planning Meeting Closed 2 00pm 2 30pm Board of Directors Meeting Closed The Family Voices Staff thanks all of the family leaders family members and professionals for the work you do everyday realizing our mission family centered care for all children and youth with special health care needs and or disabilities You are Family Voices May 18 21 2014 Washington D C 21
Family Voices Leadership Meeting  SCHEDULE Wednesday, May 21  Board Staff Retreat    The Capitol Room  9th floor  McDermot...
Family Voices Leadership Meeting  SCHEDULE Wednesday, May 21  Board Staff Retreat    The Capitol Room  9th floor  McDermot...
GENERAL INFORMATION Meeting Feedback Your evaluation of the Family Voices 2014 Family Leadership Meeting is VERY IMPORTANT to us At the end of each session you will be asked to complete a very brief evaluation At the conclusion of the conference please provide your overall feedback online at https www surveymonkey com s 2014FVMeeting You will find a Take Away form in your folders on which you can capture ideas to implement at home On Site Technical Assistance Family Voices and the National Center for Family Professional Partnerships is pleased to offer individual on site technical assistance at designated times throughout the Family Voices Conference On site TA will be available to participants who have signed up in advance of the conference Information on assigned times will be available at the registration desk For questions please see Ashlee Richey Bev Baker or Nora Wells Internet Access While in the McDermott Building the internet may be accessed by searching for the network MWE all caps with no password 22 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
GENERAL INFORMATION Meeting Feedback Your evaluation of the Family Voices 2014 Family Leadership Meeting is VERY IMPORTANT to us At the end of each session you will be asked to complete a very brief evaluation At the conclusion of the conference please provide your overall feedback online at https www surveymonkey com s 2014FVMeeting You will find a Take Away form in your folders on which you can capture ideas to implement at home On Site Technical Assistance Family Voices and the National Center for Family Professional Partnerships is pleased to offer individual on site technical assistance at designated times throughout the Family Voices Conference On site TA will be available to participants who have signed up in advance of the conference Information on assigned times will be available at the registration desk For questions please see Ashlee Richey Bev Baker or Nora Wells Internet Access While in the McDermott Building the internet may be accessed by searching for the network MWE all caps with no password 22 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
GENERAL INFORMATION Meeting Feedback Your evaluation of the Family Voices 2014 Family Leadership Meeting is VERY IMPORTANT...
GENERAL INFORMATION Meeting Feedback Your evaluation of the Family Voices 2014 Family Leadership Meeting is VERY IMPORTANT...
May 18 21 2014 Washington D C 23
May 18 21 2014 Washington D C 23
May 18-21, 2014  Washington, D.C.  23
May 18-21, 2014  Washington, D.C.  23
The Power of Partnerships ABOUT FAMILY VOICES Our MISSION Family Voices aims to achieve family centered care for all children and youth with special health care needs and or disabilities Through our national grassroots network we provide families with resources and support to make informed decisions advocate for improved public and private policies build partnerships among families and professionals and serve as a trusted resource on health care OUR VISION Every child and youth with special needs receives family centered care OUR PRINCIPLES Family centered care Because families are at the center of a child s life they must be equal partners in decision making and all aspects of the child s care Family centered care is community based coordinated culturally and linguistically competent and guided by what is best for each child and family Partnerships Family centered care is based upon strong and effective family professional relationships built within the context of families and professionals cultural values and practices to improve decision making enhance outcomes and assure quality Quality access affordability and acceptability Children with special needs deserve primary and specialty health care that is of high quality affordable within geographic reach and respectful of family and community culture Health systems that work for families and children Health policies and systems built on a foundation of family centered culturally and linguistically competent care must be the standard for all children Informed families strong communities Like their peers children with special needs deserve every opportunity to enjoy a happy and healthy childhood at home in their communities Families equipped with reliable accurate information about ways to support their child s health education and social development will help them grow into productive adults as defined by their personal family and community cultural beliefs and values Self advocacy empowerment When informed and supported young people with disabilities can make choices and advocate for themselves 24 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships ABOUT FAMILY VOICES Our MISSION Family Voices aims to achieve family centered care for all children and youth with special health care needs and or disabilities Through our national grassroots network we provide families with resources and support to make informed decisions advocate for improved public and private policies build partnerships among families and professionals and serve as a trusted resource on health care OUR VISION Every child and youth with special needs receives family centered care OUR PRINCIPLES Family centered care Because families are at the center of a child s life they must be equal partners in decision making and all aspects of the child s care Family centered care is community based coordinated culturally and linguistically competent and guided by what is best for each child and family Partnerships Family centered care is based upon strong and effective family professional relationships built within the context of families and professionals cultural values and practices to improve decision making enhance outcomes and assure quality Quality access affordability and acceptability Children with special needs deserve primary and specialty health care that is of high quality affordable within geographic reach and respectful of family and community culture Health systems that work for families and children Health policies and systems built on a foundation of family centered culturally and linguistically competent care must be the standard for all children Informed families strong communities Like their peers children with special needs deserve every opportunity to enjoy a happy and healthy childhood at home in their communities Families equipped with reliable accurate information about ways to support their child s health education and social development will help them grow into productive adults as defined by their personal family and community cultural beliefs and values Self advocacy empowerment When informed and supported young people with disabilities can make choices and advocate for themselves 24 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  ABOUT FAMILY VOICES Our MISSION  Family Voices aims to achieve family-centered care for all chi...
The Power of Partnerships  ABOUT FAMILY VOICES Our MISSION  Family Voices aims to achieve family-centered care for all chi...
Family Voices Leadership Meeting OUR WORK Family Voices is a national nonprofit organization that works to keep families at the center of children s health care Founded in 1992 Family Voices has been built by a remarkable grassroots network of family and youth leaders and friends across the country Family leaders in every state provide information assistance and support to families of all children and youth with special health care needs and or disabilities representing a wide spectrum of diagnoses and illness health conditions This network of family leadership is connected and supported by a national Family Voices staff and experienced peer leaders in four regions Youth leadership is encouraged through Kids as Self Advocates KASA a youth self advocacy project Family Voices has strong partnerships with multiple professional groups to promote quality family centered care for children and youth with special needs Family Voices monitors federal and state legislation and provides information to help families and family leaders understand the legislative proccess and advocate at both the state and national levels for policies that support the complex needs and situations of families OUR PROJECTS NATIONAL CENTER FOR FAMILY PROFESSIONAL PARTNERSHIPS NCFPP Through the NCFPP Family Voices increases the capacity of families Title V and other providers to partner around full implementation of the Affordable Care Act ACA strengthens the primary care workforce through family professional learning opportunities and improves access to quality care and innovation in the areas of family centered care cultural and linguistic competence and shared decision making IMPACT Project Improving Maternal Child Health Policies so All Children Thrive Through the IMPACT Project Family Voices assists in the development and dissemination of culturally appropriate materials focused on health and wellness promotion for all children and youth including those with special health care needs and or disabilities and their families We offer information to MCH partners health care providers family organizations and families including such topics as prevention as a core component of the ACA maternal and child health policies and practices for all children and youth through Bright Futures materials and related health and wellness resources engaging native american and spanish speaking families sharing family wisdom to reduce childhood obesity Funded by the Patient Centered Outcomes Research Institute PCORI this project focuses on developing partnerships in two Western states to empower families and build a community interested in promoting research on childhood obesity We are working with State Affiliated Organizations in Idaho and Washington states focusing on Spanish speaking and Native American families BRIGHT FUTURES Working in partnership with the American Academy of Pediatrics Family Voices IMPACT Project staff serve on the Bright Futures Steering Committee as well as the Infancy Expert Panel for the 4th Edition of the Bright Futures Guidelines for Health Supervision of Infants Children and Adolescents May 18 21 2014 Washington D C 25
Family Voices Leadership Meeting OUR WORK Family Voices is a national nonprofit organization that works to keep families at the center of children s health care Founded in 1992 Family Voices has been built by a remarkable grassroots network of family and youth leaders and friends across the country Family leaders in every state provide information assistance and support to families of all children and youth with special health care needs and or disabilities representing a wide spectrum of diagnoses and illness health conditions This network of family leadership is connected and supported by a national Family Voices staff and experienced peer leaders in four regions Youth leadership is encouraged through Kids as Self Advocates KASA a youth self advocacy project Family Voices has strong partnerships with multiple professional groups to promote quality family centered care for children and youth with special needs Family Voices monitors federal and state legislation and provides information to help families and family leaders understand the legislative proccess and advocate at both the state and national levels for policies that support the complex needs and situations of families OUR PROJECTS NATIONAL CENTER FOR FAMILY PROFESSIONAL PARTNERSHIPS NCFPP Through the NCFPP Family Voices increases the capacity of families Title V and other providers to partner around full implementation of the Affordable Care Act ACA strengthens the primary care workforce through family professional learning opportunities and improves access to quality care and innovation in the areas of family centered care cultural and linguistic competence and shared decision making IMPACT Project Improving Maternal Child Health Policies so All Children Thrive Through the IMPACT Project Family Voices assists in the development and dissemination of culturally appropriate materials focused on health and wellness promotion for all children and youth including those with special health care needs and or disabilities and their families We offer information to MCH partners health care providers family organizations and families including such topics as prevention as a core component of the ACA maternal and child health policies and practices for all children and youth through Bright Futures materials and related health and wellness resources engaging native american and spanish speaking families sharing family wisdom to reduce childhood obesity Funded by the Patient Centered Outcomes Research Institute PCORI this project focuses on developing partnerships in two Western states to empower families and build a community interested in promoting research on childhood obesity We are working with State Affiliated Organizations in Idaho and Washington states focusing on Spanish speaking and Native American families BRIGHT FUTURES Working in partnership with the American Academy of Pediatrics Family Voices IMPACT Project staff serve on the Bright Futures Steering Committee as well as the Infancy Expert Panel for the 4th Edition of the Bright Futures Guidelines for Health Supervision of Infants Children and Adolescents May 18 21 2014 Washington D C 25
Family Voices Leadership Meeting  OUR WORK  Family Voices is a national nonprofit organization that works to keep families...
Family Voices Leadership Meeting  OUR WORK  Family Voices is a national nonprofit organization that works to keep families...
The Power of Partnerships LIFE COURSE AND THE SOCIAL DETERMINANTS OF HEALTH As a member of the MCH Life Course Research Network Family Voices IMPACT staff are providing the family perspective to the IMPACT website as well as life course materials and guidelines being developed as part of a restructure and refocus of MCHB We are writing a journal article Life Course Health Development Theory and Research in Partnership with Families TITLE V Family Voices provides training and mentoring to family members who review the State Title V Block Grants each summer Care Coordination Facilitation for CYSHCN in New Mexico In partnership with Parents Reaching Out and Blue Cross Blue Shield of New Mexico Family Voices has provided information to families from Native American communities across New Mexico to help them better understand and avail themselves of their care coordination options under the Affordable Care Act ACA DATA RESOURCE CENTER DRC Through a partnership with the Child and Adolescent Measurement CAHMI Family Voices contributes the perspective of families to the development and dissemination of the DRC website and products provides input to the redesign of the National Surveys and provides family perspective on the development of tools to prepare families for well child health visits FAMILY CENTERED CARE ASSESSMENT TOOL FCCA The FCCA is a quality measurement tool that has been developed by Family Voices in partnership with expert university researchers through an extensive research protocol The 24 question tool has been documented to have high reliability and evidence of empirical validity It expands areas of quality measurement to important new content areas in decisionmaking interactions family support community services and cultural competence Family Voices is partnering with the AAP to test the FCCA in pediatric practices FLU PREVENTION AND TREATMENT At the request of the Centers of Disease Control CDC Family Voices collaborated in the collection of information from families of CYSHCN about their understanding and attitudes about flu treatments and vaccines A survey codeveloped by CDC and Family Voices found the startling results that many CYSHCN with nerurologic conditions did not receive the flu vaccine and that many pediatricians did not recognize intellectual disability as a high risk condition for the flu Family Voices worked with CDC to educate providers and families on the risks of flu for CYSHCN Children s Vision Health Education Family Voices has worked with the National Center for Children s Vision and Eye Health to provide input into the design of educational materials for families on the benefits of vision screening and dissemination of such information GENETICS EDUCATION In partnership with the Genetics Alliance and Parent to Parent USA Family Voices has contributed to education and outreach materials and programs as part of the National Genetics Education and Consumer Network NGECN project KASA Kids As Self Advocates KASA is a national project created by youth for youth with special health care needs and or disabilities to share information among their peers to increase their knowledge and experiences enabling them to become more independent KASA youth provide information to health care professionals policymakers and others to voice their issues leading to discussions about how to help each other succeed 26 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships LIFE COURSE AND THE SOCIAL DETERMINANTS OF HEALTH As a member of the MCH Life Course Research Network Family Voices IMPACT staff are providing the family perspective to the IMPACT website as well as life course materials and guidelines being developed as part of a restructure and refocus of MCHB We are writing a journal article Life Course Health Development Theory and Research in Partnership with Families TITLE V Family Voices provides training and mentoring to family members who review the State Title V Block Grants each summer Care Coordination Facilitation for CYSHCN in New Mexico In partnership with Parents Reaching Out and Blue Cross Blue Shield of New Mexico Family Voices has provided information to families from Native American communities across New Mexico to help them better understand and avail themselves of their care coordination options under the Affordable Care Act ACA DATA RESOURCE CENTER DRC Through a partnership with the Child and Adolescent Measurement CAHMI Family Voices contributes the perspective of families to the development and dissemination of the DRC website and products provides input to the redesign of the National Surveys and provides family perspective on the development of tools to prepare families for well child health visits FAMILY CENTERED CARE ASSESSMENT TOOL FCCA The FCCA is a quality measurement tool that has been developed by Family Voices in partnership with expert university researchers through an extensive research protocol The 24 question tool has been documented to have high reliability and evidence of empirical validity It expands areas of quality measurement to important new content areas in decisionmaking interactions family support community services and cultural competence Family Voices is partnering with the AAP to test the FCCA in pediatric practices FLU PREVENTION AND TREATMENT At the request of the Centers of Disease Control CDC Family Voices collaborated in the collection of information from families of CYSHCN about their understanding and attitudes about flu treatments and vaccines A survey codeveloped by CDC and Family Voices found the startling results that many CYSHCN with nerurologic conditions did not receive the flu vaccine and that many pediatricians did not recognize intellectual disability as a high risk condition for the flu Family Voices worked with CDC to educate providers and families on the risks of flu for CYSHCN Children s Vision Health Education Family Voices has worked with the National Center for Children s Vision and Eye Health to provide input into the design of educational materials for families on the benefits of vision screening and dissemination of such information GENETICS EDUCATION In partnership with the Genetics Alliance and Parent to Parent USA Family Voices has contributed to education and outreach materials and programs as part of the National Genetics Education and Consumer Network NGECN project KASA Kids As Self Advocates KASA is a national project created by youth for youth with special health care needs and or disabilities to share information among their peers to increase their knowledge and experiences enabling them to become more independent KASA youth provide information to health care professionals policymakers and others to voice their issues leading to discussions about how to help each other succeed 26 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  LIFE COURSE AND THE SOCIAL DETERMINANTS OF HEALTH  As a member of the MCH Life Course Research ...
The Power of Partnerships  LIFE COURSE AND THE SOCIAL DETERMINANTS OF HEALTH  As a member of the MCH Life Course Research ...
Family Voices Leadership Meeting OUR PARTNERSHIPS with STATE FAMILY LEADER ORGANIZATIONS At the core of Family Voices are grassroots families supported by the Family to Family Health Information Centers F2Fs and State Affiliated Organizations SAOS Through this extensive network we enjoy unique benefits National Family Voices is connected to individual families from whom we learn and to whom we can provide information F2Fs and SAOs receive critical policy guidance and technical assistance from Family Voices and the full network shares resources provides mentorships and supports one another to form an effective and trusted family voice to guide health policy at all levels of our health care system F2Fs are family staffed organizations that provide information education technical assistance and peer support to families of CYSHCN and professionals The F2F network is comprised of organizations in every state and the District of Columbia each of which receives funding from the Health Resources and Services Administration Maternal Child Health Bureau through a competitive grant process F2Fs are supported with technical assistance training and resources through Family Voices National Center for Family Professional Partnership SAOs are nonprofit family led advocacy organizations committed to the mission vision and principles of Family Voices SAOs engage in systems change in their state and at the national level to improve the quality of health care for CYSHCN and their families There are 43 SAOs nationwide Most F2Fs are also SAOs Family Voices is grateful to our network partners who are committed to keeping the voices of families at the heart of children s health care AK Stone Soup Group SAO F2F MS Family Voices of Mississippi Family 2 Family SAO F2F AL Family Voices of Alabama SAO F2F MT Parents Lets Unite for Kids PLUK SAO F2F AR Arkansas Disability Coalition F2F NC Exceptional Children s Assistance Center SAO F2F AZ Raising Special Kids SAO F2F ND Family Voices of North Dakota SAO F2F CA Support for Families of Children with Disabilities SAO F2F NE PTI Nebraska SAO F2F CO Family Voices Colorado SAO F2F NH New Hampshire Family Voices SAO F2F CT PATH Parent to Parent of Connecticut SAO F2F NJ Statewide Parent Advocacy Networkof NJ SAO F2F DC Family Voices of DC SAO NM Parents Reaching Out PRO SAO F2F DC Advocates for Justice and Education F2F NV Family TIES of Nevada SAO F2F DE Delaware Family Voices SAO F2F NY Parent to Parent of New York State SAO F2F FL Family Network on Disabilities SAO F2F OH Family Voices of Ohio SAO F2F GA Parent to Parent of Georgia F2F OK Oklahoma Family Network SAO F2F HI Hilopa a Family to Family Health Information Center F2F IA ASK Resource Center SAO F2F OR Oregon Family to Family Health Information Center F2F PA Parent Education Advocacy Leadership Center SAO F2F ID Idaho Parents Unlimited Inc SAO F2F RI Rhode Island Parent Information Network SAO F2F IL Arc of Illinois F2FHIEC The SAO F2F SC Family Connection of South Carolina Inc SAO F2F IN Family Voices Indiana SAO F2F SD South Dakota Parent Connection SAO F2F KS Families Together Inc SAO F2F TN Family Voices of Tennessee at Tennessee Disability Coalition SAO F2F KY Kentucky Commission for Children with Special Health Care Needs SAO F2F TX Texas Parent to Parent SAO F2F LA Bayou Land Families Helping Families SAO F2F UT Utah Family Voices F2F MA Massachusetts Family Voices at Federation for Children with Special Needs SAO F2F VA Family to Family Network of Virginia Center for Family Involvement VCU F2F MD Parents Place of Maryland SAO F2F VT Vermont Family Network SAO F2F ME Maine Parent Federation F2F WA PAVE Family Voices of Washington SAO F2F MI Michigan Family Voices SAO WI Family Voices of Wisconsin SAO F2F MI Michigan Public Health Institute F2F WV WV Parent Training and Information Inc SAO F2F MN Family Voices of Minnesota SAO WY Family Voices of Wyoming at UPLIFT SAO MN Pacer Center F2F WY Wyoming Institute for Disabilities WIND F2F MO Missouri Family to Family Resource Center at UMKC IHD F2F May 18 21 2014 Washington D C 27
Family Voices Leadership Meeting OUR PARTNERSHIPS with STATE FAMILY LEADER ORGANIZATIONS At the core of Family Voices are grassroots families supported by the Family to Family Health Information Centers F2Fs and State Affiliated Organizations SAOS Through this extensive network we enjoy unique benefits National Family Voices is connected to individual families from whom we learn and to whom we can provide information F2Fs and SAOs receive critical policy guidance and technical assistance from Family Voices and the full network shares resources provides mentorships and supports one another to form an effective and trusted family voice to guide health policy at all levels of our health care system F2Fs are family staffed organizations that provide information education technical assistance and peer support to families of CYSHCN and professionals The F2F network is comprised of organizations in every state and the District of Columbia each of which receives funding from the Health Resources and Services Administration Maternal Child Health Bureau through a competitive grant process F2Fs are supported with technical assistance training and resources through Family Voices National Center for Family Professional Partnership SAOs are nonprofit family led advocacy organizations committed to the mission vision and principles of Family Voices SAOs engage in systems change in their state and at the national level to improve the quality of health care for CYSHCN and their families There are 43 SAOs nationwide Most F2Fs are also SAOs Family Voices is grateful to our network partners who are committed to keeping the voices of families at the heart of children s health care AK Stone Soup Group SAO F2F MS Family Voices of Mississippi Family 2 Family SAO F2F AL Family Voices of Alabama SAO F2F MT Parents Lets Unite for Kids PLUK SAO F2F AR Arkansas Disability Coalition F2F NC Exceptional Children s Assistance Center SAO F2F AZ Raising Special Kids SAO F2F ND Family Voices of North Dakota SAO F2F CA Support for Families of Children with Disabilities SAO F2F NE PTI Nebraska SAO F2F CO Family Voices Colorado SAO F2F NH New Hampshire Family Voices SAO F2F CT PATH Parent to Parent of Connecticut SAO F2F NJ Statewide Parent Advocacy Networkof NJ SAO F2F DC Family Voices of DC SAO NM Parents Reaching Out PRO SAO F2F DC Advocates for Justice and Education F2F NV Family TIES of Nevada SAO F2F DE Delaware Family Voices SAO F2F NY Parent to Parent of New York State SAO F2F FL Family Network on Disabilities SAO F2F OH Family Voices of Ohio SAO F2F GA Parent to Parent of Georgia F2F OK Oklahoma Family Network SAO F2F HI Hilopa a Family to Family Health Information Center F2F IA ASK Resource Center SAO F2F OR Oregon Family to Family Health Information Center F2F PA Parent Education Advocacy Leadership Center SAO F2F ID Idaho Parents Unlimited Inc SAO F2F RI Rhode Island Parent Information Network SAO F2F IL Arc of Illinois F2FHIEC The SAO F2F SC Family Connection of South Carolina Inc SAO F2F IN Family Voices Indiana SAO F2F SD South Dakota Parent Connection SAO F2F KS Families Together Inc SAO F2F TN Family Voices of Tennessee at Tennessee Disability Coalition SAO F2F KY Kentucky Commission for Children with Special Health Care Needs SAO F2F TX Texas Parent to Parent SAO F2F LA Bayou Land Families Helping Families SAO F2F UT Utah Family Voices F2F MA Massachusetts Family Voices at Federation for Children with Special Needs SAO F2F VA Family to Family Network of Virginia Center for Family Involvement VCU F2F MD Parents Place of Maryland SAO F2F VT Vermont Family Network SAO F2F ME Maine Parent Federation F2F WA PAVE Family Voices of Washington SAO F2F MI Michigan Family Voices SAO WI Family Voices of Wisconsin SAO F2F MI Michigan Public Health Institute F2F WV WV Parent Training and Information Inc SAO F2F MN Family Voices of Minnesota SAO WY Family Voices of Wyoming at UPLIFT SAO MN Pacer Center F2F WY Wyoming Institute for Disabilities WIND F2F MO Missouri Family to Family Resource Center at UMKC IHD F2F May 18 21 2014 Washington D C 27
Family Voices Leadership Meeting  OUR PARTNERSHIPS with STATE FAMILY LEADER ORGANIZATIONS  At the core of Family Voices ar...
Family Voices Leadership Meeting  OUR PARTNERSHIPS with STATE FAMILY LEADER ORGANIZATIONS  At the core of Family Voices ar...
OUR LEADERSHIP BOARD OF DIRECTORS Molly Cole President Director Connecticut Council on Developmental Disabilities Marcia O Malley Vice President Former Executive Director Family TIES of Nevada Leolinda Parlin Treasurer Project Director Hawai i Pediatric Association Research and Education Foundation Grace Pushparany Williams Secretary Family Leader and Advocate Bowie MD Julie Beckett Co Chair of the Parent Advisory Group with the Section on Home Care under the American Academy of Pediatrics STAFF Cristine Marchand Executive Director Lynda Honberg Director of Strategic Partnerships Lacey Keene Director of Finance and Administration Natasha Tapia Financial Administrative Assistant Cynthia Gelien Administrative Assistant Trish Thomas Director of Diversity and Outreach Leslie Carroll IMPACT Director Melissa Vickers IMPACT Program Coordinator Nora Wells NCFPP Co Director Bev Baker NCFPP Co Director Ashlee Richey NCFPP Program Assistant Renee Turchi M D Assistant Professor Drexel University School of Public Health Director PA Medical Home Program EPIC IC Director Center for Children with Special Health Care Needs St Christopher s Hospital for Children Peters D Willson Senior Specialist Policy and Constituency Issues Association of American Medical Colleges Josie Woll Retired Exectuive Director Family Voices of Hawaii Honolulu HI CONSULTANTS Lauren Agoratus Blog Contributor Carolyn Allshouse NCFPP Consultant Diana Autin National Field Co Coordinator Suzanne Bronheim FCC Research Project Peggy Curran IT and Design Consultant Janis Guerney Policy Co Director Clarissa Hoover Research Consultant Brooke Lehmann Policy Co Director Mary Jo Paladino National Field Co Coordinator Sherry Richardson NICHQ WISCH Carlos Romero Evaluator Stephen Zyzanski FCC Research Project 2 014 family leadership planning committees Diana Autin Bev Baker Julie Beckett Leslie Carroll Cynthia Gelien Latisha Hawkins Jessica Hawks Lynda Honberg Barbara Katz Lacey Keene Cristine Marchand Jill McCormack Marcia O Malley 28 Mary Jo Paladino Leolinda Parlin Ashlee Richey Carlos Romero Tom Rose Marilyn Ruiz Todd Rundle Deepa Srinivasavaradan Natasha Tapia Trish Thomas Tara Townsend Laura Warren Nora Wells Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
OUR LEADERSHIP BOARD OF DIRECTORS Molly Cole President Director Connecticut Council on Developmental Disabilities Marcia O Malley Vice President Former Executive Director Family TIES of Nevada Leolinda Parlin Treasurer Project Director Hawai i Pediatric Association Research and Education Foundation Grace Pushparany Williams Secretary Family Leader and Advocate Bowie MD Julie Beckett Co Chair of the Parent Advisory Group with the Section on Home Care under the American Academy of Pediatrics STAFF Cristine Marchand Executive Director Lynda Honberg Director of Strategic Partnerships Lacey Keene Director of Finance and Administration Natasha Tapia Financial Administrative Assistant Cynthia Gelien Administrative Assistant Trish Thomas Director of Diversity and Outreach Leslie Carroll IMPACT Director Melissa Vickers IMPACT Program Coordinator Nora Wells NCFPP Co Director Bev Baker NCFPP Co Director Ashlee Richey NCFPP Program Assistant Renee Turchi M D Assistant Professor Drexel University School of Public Health Director PA Medical Home Program EPIC IC Director Center for Children with Special Health Care Needs St Christopher s Hospital for Children Peters D Willson Senior Specialist Policy and Constituency Issues Association of American Medical Colleges Josie Woll Retired Exectuive Director Family Voices of Hawaii Honolulu HI CONSULTANTS Lauren Agoratus Blog Contributor Carolyn Allshouse NCFPP Consultant Diana Autin National Field Co Coordinator Suzanne Bronheim FCC Research Project Peggy Curran IT and Design Consultant Janis Guerney Policy Co Director Clarissa Hoover Research Consultant Brooke Lehmann Policy Co Director Mary Jo Paladino National Field Co Coordinator Sherry Richardson NICHQ WISCH Carlos Romero Evaluator Stephen Zyzanski FCC Research Project 2 014 family leadership planning committees Diana Autin Bev Baker Julie Beckett Leslie Carroll Cynthia Gelien Latisha Hawkins Jessica Hawks Lynda Honberg Barbara Katz Lacey Keene Cristine Marchand Jill McCormack Marcia O Malley 28 Mary Jo Paladino Leolinda Parlin Ashlee Richey Carlos Romero Tom Rose Marilyn Ruiz Todd Rundle Deepa Srinivasavaradan Natasha Tapia Trish Thomas Tara Townsend Laura Warren Nora Wells Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
OUR LEADERSHIP BOARD OF DIRECTORS  Molly Cole, President  Director, Connecticut Council on Developmental Disabilities Marc...
OUR LEADERSHIP BOARD OF DIRECTORS  Molly Cole, President  Director, Connecticut Council on Developmental Disabilities Marc...
May 18 21 2014 Washington D C 29
May 18 21 2014 Washington D C 29
May 18-21, 2014  Washington, D.C.  29
May 18-21, 2014  Washington, D.C.  29
The Power of Partnerships One in Five Families with Children Has at Least One Child with Special Health Care Needs Join Family Voices National Membership Public Awareness Campaign Make a Difference Did You Know Family Voices Makes a Difference More than one in five families has at least one child with special health care needs 23 of families Through our national office and 43 state affiliates we directly impact the lives of children and youth with special health care needs and their families Approximately 14 6 Million children ages 0 17 years in the US have special health care needs SHCN That s nearly 20 19 8 We provide information training and support to thousands of families and professionals throughout the country about current issues in health care the Affordable Care Act Medicaid FamilyCentered Care Healthy Lifestyles for Children Youth to Combat Obesity Transition from Pediatric Care Genetics and more The health care needs of these children may be physical developmental behavioral or emotional and represent a wide range of conditions including autism cerebral palsy developmental delay intellectual disabilities depression learning disabilities and epilepsy Children with SHCN often have more than one condition and functional difficulties in more than one area that impacts their daily lives such as breathing communicating chronic pain learning moving around behavior or challenges in making and keeping friends We give families tools and information to make informed decisions about their children s health care Our national monthly and quarterly publications reach over 2 000 individuals We offer 1 1 family support peer mentoring and leadership development Their families typically experience greater stress struggling to meet the needs of their child in a maze of multiple and complex systems of care Many families find that insurance is not adequate care coordination is ineffective and referrals are difficult Families of children with SHCN are less likely to have family centered health care Our national office works at the federal level with Congress and others to ensure important programs are funded and that health policy is family centered our state affiliates impact programs and policies in their own states ensuring that the voices of families are heard Join Us Go to www familyvoices org Membership costs range from 15 students to organizational memberships based on budget size Memberships for youth with disabilities under age 24 are free State affiliates retain 60 of each membership fee paid by members within their state One in Five Get the Word Out Order and wear buttons at public events information fairs membership meetings trainings and in your community Tell others about the One in Five families Child and Adolescent Health Measurement Initiative 2013 Who Are Children with Special Health Care Needs CSHCN Data Resource Center supported by Cooperative Agreement 1 U59 MC06980 01 from the U S Department of Health and Human Services Health Resources and Services Administration HRSA Maternal and Child Health Bureau MCHB Available at www childhealthdata org Revised 4 15 13 30 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships One in Five Families with Children Has at Least One Child with Special Health Care Needs Join Family Voices National Membership Public Awareness Campaign Make a Difference Did You Know Family Voices Makes a Difference More than one in five families has at least one child with special health care needs 23 of families Through our national office and 43 state affiliates we directly impact the lives of children and youth with special health care needs and their families Approximately 14 6 Million children ages 0 17 years in the US have special health care needs SHCN That s nearly 20 19 8 We provide information training and support to thousands of families and professionals throughout the country about current issues in health care the Affordable Care Act Medicaid FamilyCentered Care Healthy Lifestyles for Children Youth to Combat Obesity Transition from Pediatric Care Genetics and more The health care needs of these children may be physical developmental behavioral or emotional and represent a wide range of conditions including autism cerebral palsy developmental delay intellectual disabilities depression learning disabilities and epilepsy Children with SHCN often have more than one condition and functional difficulties in more than one area that impacts their daily lives such as breathing communicating chronic pain learning moving around behavior or challenges in making and keeping friends We give families tools and information to make informed decisions about their children s health care Our national monthly and quarterly publications reach over 2 000 individuals We offer 1 1 family support peer mentoring and leadership development Their families typically experience greater stress struggling to meet the needs of their child in a maze of multiple and complex systems of care Many families find that insurance is not adequate care coordination is ineffective and referrals are difficult Families of children with SHCN are less likely to have family centered health care Our national office works at the federal level with Congress and others to ensure important programs are funded and that health policy is family centered our state affiliates impact programs and policies in their own states ensuring that the voices of families are heard Join Us Go to www familyvoices org Membership costs range from 15 students to organizational memberships based on budget size Memberships for youth with disabilities under age 24 are free State affiliates retain 60 of each membership fee paid by members within their state One in Five Get the Word Out Order and wear buttons at public events information fairs membership meetings trainings and in your community Tell others about the One in Five families Child and Adolescent Health Measurement Initiative 2013 Who Are Children with Special Health Care Needs CSHCN Data Resource Center supported by Cooperative Agreement 1 U59 MC06980 01 from the U S Department of Health and Human Services Health Resources and Services Administration HRSA Maternal and Child Health Bureau MCHB Available at www childhealthdata org Revised 4 15 13 30 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  One in Five Families with Children Has at Least One Child with Special Health Care Needs  Join ...
The Power of Partnerships  One in Five Families with Children Has at Least One Child with Special Health Care Needs  Join ...
Family Voices Leadership Meeting POLLY ARANGO Mentoring Initiative Supporting a New Generation of Family Leaders of Cultural and Linguistic Diversity The Polly Arango Mentoring Initiative seeks to support Family Voices State Affiliates in preparing families from diverse cultural and linguistic backgrounds to join a new generation of family leaders that reflects the growing diverse populations within states and our nation while building the leadership and advocacy of Family Voices State Affiliate Organizations SAOs at the state level Polly Arango beloved mother friend and founder of Family Voices was a passionate advocate for children with special health care needs and their families Polly served as the first Family Voices Executive Director which now has active state affiliates across the country Polly s vision for a nationwide empowered and vocal voice of families includes the voices of families from diverse cultural and linguistic backgrounds Polly cultivated new leaders and envisioned the leadership of Family Voices at the state and national levels to reflect the richness and diversity of our nation Leadership development through mentoring was one of Polly s long standing passions To establish a lasting memorial to Polly Family Voices will use funds from the Polly Arango Memorial Fund to establish a mentoring program The mentoring program will support the growth of the Family Voices organization through the development and support of emerging family leaders from culturally and linguistically diverse backgrounds There are two funding opportunities for State Affiliates in Good Standing 3 4 SAOs that wish to conduct Family Leadership Mentoring for Families of Cultural Linguistic Diversity will be selected based on an application process Up to 5 000 per state 3 4 coaches from SAOs that wish to serve as coaches mentors for the states selected to conduct Family Leadership Mentoring for Families of Cultural Linguistic Diversity 1 000 per state mentored Projects are one year Applications Due July 1 2014 Selection by August 1 2014 Funding Begins September 1 2014 Applications are available at www familyvoices org or at the 2014 Family Leadership Meeting May 18 21 2014 Washington D C 31
Family Voices Leadership Meeting POLLY ARANGO Mentoring Initiative Supporting a New Generation of Family Leaders of Cultural and Linguistic Diversity The Polly Arango Mentoring Initiative seeks to support Family Voices State Affiliates in preparing families from diverse cultural and linguistic backgrounds to join a new generation of family leaders that reflects the growing diverse populations within states and our nation while building the leadership and advocacy of Family Voices State Affiliate Organizations SAOs at the state level Polly Arango beloved mother friend and founder of Family Voices was a passionate advocate for children with special health care needs and their families Polly served as the first Family Voices Executive Director which now has active state affiliates across the country Polly s vision for a nationwide empowered and vocal voice of families includes the voices of families from diverse cultural and linguistic backgrounds Polly cultivated new leaders and envisioned the leadership of Family Voices at the state and national levels to reflect the richness and diversity of our nation Leadership development through mentoring was one of Polly s long standing passions To establish a lasting memorial to Polly Family Voices will use funds from the Polly Arango Memorial Fund to establish a mentoring program The mentoring program will support the growth of the Family Voices organization through the development and support of emerging family leaders from culturally and linguistically diverse backgrounds There are two funding opportunities for State Affiliates in Good Standing 3 4 SAOs that wish to conduct Family Leadership Mentoring for Families of Cultural Linguistic Diversity will be selected based on an application process Up to 5 000 per state 3 4 coaches from SAOs that wish to serve as coaches mentors for the states selected to conduct Family Leadership Mentoring for Families of Cultural Linguistic Diversity 1 000 per state mentored Projects are one year Applications Due July 1 2014 Selection by August 1 2014 Funding Begins September 1 2014 Applications are available at www familyvoices org or at the 2014 Family Leadership Meeting May 18 21 2014 Washington D C 31
Family Voices Leadership Meeting  POLLY ARANGO Mentoring Initiative Supporting a New Generation of Family Leaders of Cultu...
Family Voices Leadership Meeting  POLLY ARANGO Mentoring Initiative Supporting a New Generation of Family Leaders of Cultu...
The Power of Partnerships Thank You to the Dedicated Family Voices Team Thank you to the National Family Voices Team for your passion commitment to our mission and exemplary work The 2014 Family Leadership Meeting is made possible by the hard work of national staff and consultants along with volunteers and family leaders throughout the country Throughout this transition year at Family Voices we have appreciated the team s support new ideas and continued dedication Kudos to the Staff Bev Baker Leslie Carroll Cynthia Gelien Lacey Keene Ashlee Richey Natasha Tapia Trish Thomas Melissa Vickers Nora Wells and Consultants Diana Autin Peggy Curran Janis Guerney Clarissa Hoover Brooke Lehmann Mary Jo Paladino from Cristy Marchand and Lynda Honberg Co Directors Family Voices Angels Dave Woll Polly and Nick Arango and Katie Beckett We miss you dearly 32 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships Thank You to the Dedicated Family Voices Team Thank you to the National Family Voices Team for your passion commitment to our mission and exemplary work The 2014 Family Leadership Meeting is made possible by the hard work of national staff and consultants along with volunteers and family leaders throughout the country Throughout this transition year at Family Voices we have appreciated the team s support new ideas and continued dedication Kudos to the Staff Bev Baker Leslie Carroll Cynthia Gelien Lacey Keene Ashlee Richey Natasha Tapia Trish Thomas Melissa Vickers Nora Wells and Consultants Diana Autin Peggy Curran Janis Guerney Clarissa Hoover Brooke Lehmann Mary Jo Paladino from Cristy Marchand and Lynda Honberg Co Directors Family Voices Angels Dave Woll Polly and Nick Arango and Katie Beckett We miss you dearly 32 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  Thank You to the Dedicated Family Voices Team   Thank you to the National Family Voices Team fo...
The Power of Partnerships  Thank You to the Dedicated Family Voices Team   Thank you to the National Family Voices Team fo...
Family Voices Leadership Meeting Family Voices Indiana thanks Mary Jo Paladino for Board Service 2007 2013 To our staff for their dedication to New Hampshire families Martha Jean and Terry May 18 21 2014 Washington D C 33
Family Voices Leadership Meeting Family Voices Indiana thanks Mary Jo Paladino for Board Service 2007 2013 To our staff for their dedication to New Hampshire families Martha Jean and Terry May 18 21 2014 Washington D C 33
Family Voices Leadership Meeting  Family Voices Indiana thanks Mary Jo Paladino for Board Service 2007-2013.  To our staff...
Family Voices Leadership Meeting  Family Voices Indiana thanks Mary Jo Paladino for Board Service 2007-2013.  To our staff...
The Power of Partnerships We lovingly remember the children of members of the Family Voices network who passed away during this year We extend our deepest sympathy for the loss of these and other family members and friends We are grateful for the joy their lives contributed to their families and communities They live on forever in our memories Latoya daughter of Phyllis Landry Becky daughter of Grace Sisco Bridget daughter of Maureen Mitchell Nick son of John and Polly Arango 34 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships We lovingly remember the children of members of the Family Voices network who passed away during this year We extend our deepest sympathy for the loss of these and other family members and friends We are grateful for the joy their lives contributed to their families and communities They live on forever in our memories Latoya daughter of Phyllis Landry Becky daughter of Grace Sisco Bridget daughter of Maureen Mitchell Nick son of John and Polly Arango 34 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  We lovingly remember the children of members of the Family Voices network who passed away durin...
The Power of Partnerships  We lovingly remember the children of members of the Family Voices network who passed away durin...
Family Voices Leadership Meeting A national resource partner and advocate for state public health leaders and others working to improve the health of women children youth and families including those with special health care needs http www amchp org Promoting access quality and leadership in parent to parent support across the country www p2pusa org info p2pusa org May 18 21 2014 Washington D C 35
Family Voices Leadership Meeting A national resource partner and advocate for state public health leaders and others working to improve the health of women children youth and families including those with special health care needs http www amchp org Promoting access quality and leadership in parent to parent support across the country www p2pusa org info p2pusa org May 18 21 2014 Washington D C 35
Family Voices Leadership Meeting  A national resource, partner and advocate for state public health leaders and others wor...
Family Voices Leadership Meeting  A national resource, partner and advocate for state public health leaders and others wor...
The Power of Partnerships 36 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships 36 Building Collaborations to Improve Care for Children Youth with Special Health Care Needs
The Power of Partnerships  36  Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs...
The Power of Partnerships  36  Building Collaborations to Improve Care for Children   Youth with Special Health Care Needs...
We are pleased to support Family Voices and the 2014 Family Leadership Meeting The Power of Partnerships Learn about the foundation s work to support children with special health care needs and their families www lpfch cshcn org 650 497 8365
We are pleased to support Family Voices and the 2014 Family Leadership Meeting The Power of Partnerships Learn about the foundation s work to support children with special health care needs and their families www lpfch cshcn org 650 497 8365
We are pleased to support  Family Voices and the  2014 Family Leadership Meeting  The Power of Partnerships Learn about th...
We are pleased to support  Family Voices and the  2014 Family Leadership Meeting  The Power of Partnerships Learn about th...
Family Voices Inc 3701 San Mateo Blvd NE Suite 103 Albuquerque NM 87110 Phone 505 872 4774 or 888 835 5669 Fax 505 872 4780 www familyvoices org U S Department of Health and Human Services With support from Health Resources and Services Administration
Family Voices Inc 3701 San Mateo Blvd NE Suite 103 Albuquerque NM 87110 Phone 505 872 4774 or 888 835 5669 Fax 505 872 4780 www familyvoices org U S Department of Health and Human Services With support from Health Resources and Services Administration
Family Voices, Inc. 3701 San Mateo Blvd. NE, Suite 103 Albuquerque, NM 87110 Phone   505  872-4774 or  888  835-5669 Fax  ...
Family Voices, Inc. 3701 San Mateo Blvd. NE, Suite 103 Albuquerque, NM 87110 Phone   505  872-4774 or  888  835-5669 Fax  ...