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 Ø8:00am – 4:00pm Registration Open Ø8:30am - 9:00am Continental Breakfast Ø9:00am - 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 Ø9:15am - 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 Ø10:30am - 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 Ø8:00am – 4:00pm Registration Open Ø8:30am - 9:00am Continental Breakfast Ø9:00am - 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 Ø9:15am - 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 Ø10:30am - 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 Ø10:45am - Noon breakout sessions (Choose one) ØHealth 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 ØMeasuring 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 ØDeveloping 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 Ø10:45am - Noon breakout sessions (Choose one) ØHealth 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 ØMeasuring 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 ØDeveloping 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 ØNoon - 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 ØPolly Arango Mentoring Initiative: Cristine Marchand, Executive Director, Family Voices ØNew Initiatives: Diana Autin, National Field Co-Coordinator, Family Voices Mary Jo Paladino, National Field Co-Coordinator, Family Voices ØConcluding Remarks: Beverly Baker, Co-Director, Family Voices National Center for Family/Professional Partnership Ø1:20pm - 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 ØNoon - 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 ØPolly Arango Mentoring Initiative: Cristine Marchand, Executive Director, Family Voices ØNew Initiatives: Diana Autin, National Field Co-Coordinator, Family Voices Mary Jo Paladino, National Field Co-Coordinator, Family Voices ØConcluding Remarks: Beverly Baker, Co-Director, Family Voices National Center for Family/Professional Partnership Ø1:20pm - 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 Ø1:30pm - 3:30pm breakout sessions (Choose one) ØTips & 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 ØPartnering 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 ØCreating 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 Ø3:30pm - 3:45pm break 12 Building Collaborations to Improve Care for Children & Youth with Special Health Care Needs
The Power of Partnerships Ø1:30pm - 3:30pm breakout sessions (Choose one) ØTips & 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 ØPartnering 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 ØCreating 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 Ø3:30pm - 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 Ø3:45pm - 5:00pm breakout sessions (Choose one) ØF2F 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 ØHealth 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 ØReaching 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 Ø3:45pm - 5:00pm breakout sessions (Choose one) ØF2F 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 ØHealth 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 ØReaching 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 Ø8:00am – 5:00pm Registration Open Ø8:00am - 8:50am Continental Breakfast - round tables ØHealth & 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 ØStaff 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 ØRural 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 Ø8:00am – 5:00pm Registration Open Ø8:00am - 8:50am Continental Breakfast - round tables ØHealth & 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 ØStaff 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 ØRural 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 ØThe 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 ØFamily 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 ØLet’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 ØThe 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 ØFamily 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 ØLet’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 Ø9:00am - 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 Ø10:30am - 10:45am break Ø10:45am - 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 Ø9:00am - 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 Ø10:30am - 10:45am break Ø10:45am - 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 ØNoon - 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 Ø1:30pm - 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. Ø1:50pm - 2:00pm concluding remarks Marcia O’Malley,Vice-President, Family Voices Board of Directors Ø2:00pm - 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 ØNoon - 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 Ø1:30pm - 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. Ø1:50pm - 2:00pm concluding remarks Marcia O’Malley,Vice-President, Family Voices Board of Directors Ø2:00pm - 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 Ø8:00am – 2:00pm Board/Staff Strategic Planning Meeting (Closed) Ø2:00pm – 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 Ø8:00am – 2:00pm Board/Staff Strategic Planning Meeting (Closed) Ø2:00pm – 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  ...