A report of the activities, stories, finances, and members of Family Voices in FY 2014.

IMAGINE LEAD Celebrate etarbeleC DAEL ENIGAMI quality health care for all children FY 2014 ANNUAL REPORT 1
IMAGINE LEAD Celebrate  etarbeleC DAEL ENIGAMI quality health care for all children  FY 2014 ANNUAL REPORT 1
OUR FOUNDATION F amily 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 health care needs receives family-centered care. OUR principles: Family-centered care. 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. OUR WORK: We strengthen family leadership across the country through a grassroots network of cross-disability family organizations in every state to assist families and improve services. We educate families on their role as partners in decision-making to improve care. We share family perspectives to raise awareness of family needs through our partnerships and grassroots efforts at the local, state, and national levels. 2
OUR FOUNDATION  F amily Voices  OUR MISSION   Family Voices aims to achieve family-centered care for all children and yout...
“To accomplish great things, we must not only act, but also dream; not only plan but also believe.” Anatole France Imagine . . . A child’s provider who discusses treatment options, helps the family identify financing options, and considers care in the context of the family’s community and life. Insurance companies that have the resources to refer families to community-based parent groups or disability organizations. A child’s provider who coordinates care with other providers, schools, early intervention programs, and state agencies such as Title V, Department of Mental Health, or other programs. Pediatric practices, hospitals/clinics, and state agencies that proactively include families as advisors and trainers, providing support and compensation for such services. These are the dreams that spark families of children and youth with special health care needs (CYSHCN) to take action to improve the health and, ultimately, the life of their child. Love for their child, their knowledge and experiences, and a lifetime commitment empower their belief that programs and policies can be made better—for their child and for others. Molly Cole President For over 20 years, Family Voices has pursued the dream of family-centered care for families with children/youth with special health care needs. We have assisted families in navigating systems of services; we have mentored new generations of family leadership; and we have infused policies and programs with the voices of families across the country. LEAD . . . During the past year Family Voices has provided leadership in implementing family-centered care, ensured that families have access to family-to-family support, served as a resource in the rollout of the Affordable Care Act, and facilitated a network of family leaders in the states to share their knowledge, experiences, and best practices in supporting families and partnering with professionals. Cristine Marchand Executive Director Looking forward to the future, we have identified new strategic directions to accomplish our mission. celebrate . . . We hope you will join us in a celebrating our successes and work with us as we continue to help families of children/youth with special health care needs. Together, we can accomplish great things for our nation’s families. Lynda Honberg Director of Strategic Partnerships 1
   To accomplish great things, we must not only act, but also dream  not only plan but also believe.    Anatole France  Im...
Sister Bonds in South Dakota Alejandra and Isabella don’t talk in the same way as other sisters, but the bond they share runs just as deep. “Alejandra lights up every time Isabella comes through the door. Isabella dotes on her little sister, helping with her G-tube medication and feeding,” exclaims the girls’ mom, Natasha. Alejandra was born with hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent. Natasha learned about South Dakota Parent Connection, the South Dakota Family-to-Family Health Information Center and the State Affiliate of Family Voices, while searching the Internet for programs and support for Alejandra. Thanks to the resources offered by Family Voices, Alejandra will be ready for preschool next year and the family has a new network of support and relationships. celebrate . . . family culture and values Natasha, a Registered Nurse with Indian Health Services, is now paying it back by referring other families of children with special needs to needed resources. She hopes to become involved at the state and national level advocating for other families. With help from Family Voices, both Mom Natasha and Dad Raymon have not only improved life for their family, they are becoming leaders for other families. LEAD . . . by Strengthening Family Leadership autism support, Medicaid, case management, policy, and advocacy; and Since its founding over 20 years ago, Family Voices has been committed to “Nothing for Families without Families!” and has actively and successfully pursued avenues to impart family wisdom and experiences in policy and program discussions. Ongoing development of family leadership across the country is a core principle of Family Voices. Family Voices provides leadership development in a number of ways. • Advising family leaders on organizational development, sustainability, grant reporting, technology, strategic planning, cultural competence self-assessments, and board development. One-to-One Support: Providing timely individual assistance and mentorship is critical to leadership development. Last year, Family Voices staff and consultants responded to requests for support in such areas as: • Building partnerships with Title V, Federally Qualified Health Centers, Early Intervention, ACA Navigators, and Developmental Disabilities Councils; Training: Hosting ongoing webinars and a national family leadership meeting held in May 2014 in Washington, D.C., The Power of Partnerships, provided family leaders with training around: partnership development, family advocacy, grant management, screening, health literacy, sustainability, serving diverse families, policy advocacy, health and wellness, social media, and family-centered care. A webinar series for family/ professional teams was facilitated on Quality Improvement with the National Institute for Children’s Health Quality (NICHQ). This series provided participants with a theoretical model for quality improvement followed by an opportunity to apply this new knowledge to a current project. • Developing parent training around MCH core outcomes, family participation in state advisory committees and initiatives; • Addressing current issues related to the ACA, family leave, 2
Sister Bonds in South Dakota Alejandra and Isabella don   t talk in the same way as other sisters, but the bond they share...
Karim: Growing Up to be Independent in Kansas Ten-year old Karim has Down syndrome. Like many parents who want to give their child the best possible life, Karim’s parents started attending conferences and meetings through their state’s Family Voices State Affiliate, Families Together, Inc. Mom learned that while she wanted to do everything for Karim, instead she was encouraging his dependency. She realized that still feeding and dressing Karim at nine years old was treating him as a baby. The family began to learn that instead of helping Karim, they were holding him back. With support and information the family has helped Karim to become more independent. He is a different child now. He plays with other children, gets dressed, cleans up after himself— and, of course, gets into trouble like any other 10-year old boy! celebrate . . . independence coordination; a response panel on Patient-Centered Medical Home research; and a panel on family-centered mental health services at the annual American Academy of Pediatricians (AAP) National Conference and Exhibition. Peer-to-Peer Support: Facilitated peer-to-peer mentorship and the sharing of resources and model practices occurs through monthly State Affiliate Organization (SAO) calls, Familyto-Family Health Information Centers (F2F) webinars, listserv communications, networking sessions at the Family Leadership meeting, the 2014 F2F Activities Booklet, and state-specific pages on the National Center for Family/Professional Partnerships (NCFPP) website. Youth Leadership: Family Voices KASA (Kids As Self Advocates) is a national grassroots project created by youth with disabilities for youth focusing on advocacy and leadership development. KASA knows youth can make choices and advocate for themselves if they have the information and support they need. Activities of KASA this year included: The Polly Arango Mentoring Initiative was launched to strengthen SAOs through the development and support of emerging family leaders from culturally and linguistically diverse backgrounds. This initiative honors the work of Family Voices founder Polly Arango in mentoring and cultivating new leadership reflecting the richness and diversity of our nation. Practical Opportunities: Family leaders are connected with opportunities to participate in national initiatives and Family Voices provides mentoring to help them be successful. This past year, family leaders were supported to participate in State Title V Block Grant reviews; Delphi Panels on medical home and care • Hosted three webinars this spring: What Youth Leaders and Millennials Need to Know about Health Insurance and the Affordable Care Act; Social Media—Reaching Youth; and Developing and Running a Self-Advocacy Group; • Collaborated with Young Invincibles; and • Created tip sheets on engaging youth in health care and transition. 3
Karim  Growing Up to be Independent in Kansas Ten-year old Karim has Down syndrome. Like many parents who want to give the...
Getting Pointed in the Right Direction in Arizona In her short life, Adilynn has gone through multiple medical procedures and has seen over a dozen specialists. Imagine the frustration of being bombarded by information, decisions, paperwork, and insurance issues. Adilynn’s mom Laurie exclaims, “We were drowning and couldn’t catch up.” Adilynn is now 15 months old and her mother reports that “she is doing amazingly well! After numerous infections, hospitalizations, and pneumonias, she finally was able to have her neurosurgery and it was a HUGE success. Adilynn is walking, running, and happy as ever. During that surgery we found out that Addie has a rare immune disorder that affects both sides of the immune system. Thanks to many wonderful plasma donors, Addie gets infusions of antibodies from 2000 -10000 donors bi-weekly. She has gained a ton of weight and is now on the normal spectrum. Adilynn is still fed solely by family support G-tube but we are starting more intense therapies for swallowing soon. Addie is the light of our lives. She inspires all who know her.” celebrate . . . Laurie adds, “We have had such an amazing support system. Thanks to the resources offered by the Family Voices State Affiliate and Family-to-Family Health Information Center in Arizona—Raising Special Kids, that cry for help has turned into ‘I can talk to someone who understands and who is a few steps ahead of where we are. I got pointed in the right direction!’ Life with a special needs child isn’t always easy but is amazing every minute.” LEAD . . . by Educating Families they can use to become a respected partner with their child’s provider. Family Voices produces a variety of materials to help families in their role as primary caregiver for their child: tip sheets, fact sheets, guides, glossaries, newsletters, resources blasts, posters, media toolkits, and social media messages. This information is disseminated via the Internet, through the network of family leaders, and through our partners, including Title V. Key areas that we have focused on this year include: The Affordable Care Act: Enrollment for health care coverage through state and federal exchanges took place during this year and we engaged in a number of efforts to help families and others understand the complexities of this law. Through our weekly newsletter, Washington D.C. Update, readers have been provided with summaries of national and state ACA-related actions and what those mean to families. An ACA resource section was built on the NCFPP website, organizing materials on obtaining coverage, specific medical/health issues, and Medicaid expansion. A monthly blog was launched on the Family Voices Partnering: Family-centered care requires that families take an active role in decision-making. Family Voices provides research information, practical advice, and other resources through materials, including the e-newsletter, Friday’s Child, to help families learn what constitutes family-centered care and the strategies 4
Getting Pointed in the Right Direction in Arizona In her short life, Adilynn has gone through multiple medical procedures ...
Trysten: A Life-F ulfilling Journey in Ohio Trysten is an energetic 7-year old boy who loves life—traveling, reading, and music. Mom, Kamesha, reflects: “Our life journey together has been unique, fun, and unpredictable.” At infancy Trysten developed a condition known as Infantile Spasms and was later diagnosed with Cerebral Palsy. Trysten had as many as 100 seizures a day at one year old. Kamesha recalls: “Our days consisted of researching, counting seizures, and visiting the hospital. After years of researching infantile spasms, I realized that my obsessive research was more negative than positive. I decided that our energy needed to be placed in a more positive direction.” celebrate . . . a child’s love Volunteering and learning is mom’s passion. After graduating from the Leadership Education in Neurodevelopmental and Related Disabilities training program (LEND) at Cincinnati Children’s Hospital, Kamesha is now a Health Information Specialist for the Family-to-Family Health Information Center of Ohio. Like so many other family leaders throughout the Family Voices national network, her professional and personal experiences allow her to have a strong connection with families. Today, after being nearly seizure free, Trysten is getting his first bike and looks forward to trying adaptive sports. “The biggest lesson I’ve learned? Just give my son a chance. So I’m devoted to allowing Trysten to live a happy and fulfilling life,” shares Kamesha. NCFPP website to provide information on ACA-related topics, such as: enrollment, provider network, immigrant coverage, changing circumstances, therapies, health and wellness, and oral health. • Sharing of information learned from English and Spanishspeaking families on effective messaging for families on life course, social determinants of health, and the key role families play in improving health and wellness for children, Health and Wellness: Family Voices IMPACT Project (Improving Maternal and Child Health Programs and Policies so that All Children Thrive) focuses on increasing the power of families to improve the health and wellness of all children, including children and youth with special health care needs and disabilities, over the life span. Activities this year included: • Translating into Spanish Bright Futures Family Pocket Guide: Raising Healthy Infants, Children, and Adolescents (2nd ed.): Bright Futures Guía Para Las Familias, and • Launching of a new website, www.fv-impact.org, providing a wide array of materials and resources for families, organized by health & wellness theme, lifespan stage, and topics of interest. 5
Trysten  A Life-F ulfilling Journey in Ohio Trysten is an energetic 7-year old boy who loves life   traveling, reading, an...
Jana: Finding a New Life in Connecticut Nine-year old Jana has autism. She knows only a few words and requires intensive support with eating, bathing, and dressing. When Jana was diagnosed, the family knew nothing about autism. On top of that, they had recently moved to the United States where “everything, including Jana’s condition, was new to us,” according to parents Paul and Sissy. Thankfully the family found Family Voices of Connecticut/PATH where they got the information they needed about autism and new approaches to help Jana learn. “We are seeing Jana make advances every day now. Without Family Voices of Connecticut/ PATH, these things would not be happening. Thank you!” celebrate . . . diversity LEAD . . . by Raising Awareness of treatment for autism, we keep children’s health in the spotlight. Some of the initiatives Family Voices has supported during the past year include: More than one in five families has at least one child with special health care needs—23% of families, or almost 9 million households. While the health care needs of these children vary, many families experience greater stress in struggling to meet the needs of their child in a maze of multiple and complex systems of care. Often families find that insurance is not adequate, care coordination is ineffective, and referrals are difficult. Families gain critical information from their experiences that is key to making programs and policies successful. • Reauthorizing the Children’s Health Insurance Program (CHIP); Emergency Medical Services for Children Program; Maternal, Infant, and Early Childhood Home Visiting Program; and autism research and services legislation; • Limiting restraint and seclusion practices in schools and ending abuse in residential treatment facilities; ONE in FIVE Campaign: This initiative was launched this spring to raise awareness of the needs of families of CYSHCN among families and professionals and to connect them to Family Voices and the network of family leaders across the country. • Ensuring adequate funding for the Maternal and Child Health Block Grant, respite care, and family caregiver support; • Ratifying the UN Convention on the Rights of Persons with Disabilities; and Policy and Legislation: The needs of families are foremost in the minds of our policy team when they consider support for various legislative and regulatory proposals. By signing on to endorsement letters or writing comments about regulatory policy, such as the TRICARE (military health) program’s coverage • Cosponsoring Capitol Hill briefings on quality health care for children, autism, and the role of CHIP and Medicaid in assisting families with the costs of caring for CYSHCN. 6
Jana  Finding a New Life in Connecticut Nine-year old Jana has autism. She knows only a few words and requires intensive s...
Anna: Growing Up Happy in Massachusetts Anna is a charming 23-year old woman who loves to laugh and has a wonderful gift to make those around her feel happy. This positive attitude is a remarkable achievement as Anna has had many challenges to face. After adopting Anna as a baby, Anna’s parents became concerned with her developmental progress. By connecting with a Developmental Pediatrician, Anna began a long journey of therapies, medical diagnostic tests, and many special education programs. Anna’s mother learned quickly the value of peer support in helping herself and Anna, and in advocating for others. Mom, Peggy, says: “Along the way, I was very lucky to be a part of the Family Voices network. At my first Family Voices conference, I networked with incredible family leaders who gave me guidance about community and friends working with Anna’s doctors. At every conference since then, I’ve met wonderful, engaging family leaders who provided valuable advice, including help with transition issues. ” celebrate . . . Today Anna lives semi-independently in a home of her own and continues to share her gift of spreading joy. American Academy of Pediatrics. Partnerships: Family Voices actively seeks opportunities to work with other organizations to help families of CYSHCN. We understand the broad needs of families and also learn about current issues from families. In this past year, Family Voices has contributed the family perspective: Partnerships also provide opportunities to share important public health messages with families. Over the past year we worked with: • Centers for Disease Control and Prevention to educate families about the risk of flu complications for children with developmental disorders and to encourage flu prevention; • As a member of the Technical Expert Panel on the National Survey of Child Health, tasked with revising a cross-disability survey measuring families’ experiences caring for their CYSHCN; • As a contributor to AHRQ Research Centers of Excellence in developing tools to measure child health quality; • Centers for Disease Control and Prevention to learn from families about their experiences with emergencies and disasters; • In collaboration with the Child and Adolescent Health Measurement Initiative to ensure family access to national child health surveys through the Data Resource Center; and • The National Center for Children’s Vision and Eye Health at Prevent Blindness America to spread the word about the importance of vision screening; and • In validating the Family-Centered Care Assessment (FCCA), a tool to measure family-centeredness of care from a pediatric provider, which will be piloted in collaboration with the • The Health Resources and Service Administration to highlight the dangers of unintentional poisonings and the tools to prevent them. 7
Anna  Growing Up Happy in Massachusetts Anna is a charming 23-year old woman who loves to laugh and has a wonderful gift t...
HIGHLIGHTS accomplishments We are particularly proud of the following work accomplished over the last year: Demonstrated the value of F2Fs, contributing to the signing of legislation to continue the funding of these 51 centers for the next 18 months. Hosted The Power of Partnerships, a three-day meeting in Washington, D.C., attended by family leaders from 42 states and partners to share information and gain knowledge about the latest in best practices for healthy lives. Lynda Honberg, Molly Cole, Cristine Marchand, and Julie Beckett recognizing Senator Frank Pallone, Jr., of New Jersey at From the Heart Legislative Reception in May, 2014 in Washington, D.C. Honored our legislative champions, who, throughout their careers, have committed to helping families access affordable, familycentered, and community-based health care: U.S. Senator Harkin, U.S. Senator Hatch, U.S. Senator Menendez, U.S. Representative Pallone, U.S. Representative Waxman, and U.S. Senator Wyden. Selected four organizations as the inaugural recipients of the Polly Arango Mentoring Initiative for Leadership by Families of Cultural and Linguistic Diversity: Alaska Stone Soup Group (Focus: Native Alaskan families), Iowa Family Voices at ASK Resource Center (Focus: Spanish-speaking families), Family Voices of Minnesota (Focus: Somali families), and North Carolina Exceptional Children’s Assistance Center (Focus: Spanish-speaking families), and selected Mercedes Rosa of SPAN of NJ as mentor. Awarded a new three-year cooperative agreement by the Maternal and Child Health Bureau as the National Center for Family/Professional Partnerships (NCFPP).  The new NCFPP focuses on: full implementation of the ACA; strengthening the primary care workforce through family/professional learning opportunities; and improving access to quality care and innovation in the areas of family-centered care, cultural and linguistic competence, and shared decision-making. Family Voices has been the NCFPP for the past eight years. Developed and/or updated resources such as: • Family-Centered Care Assessment tool, • Partnering with Your Child’s Health Plan and Partnering with Your Child’s Provider, • Bright Futures Family Pocket Guide (Spanish) - Bright Futures: Criando bebes, ninos y adolescents saludables Guia Para Las Familias, • Affordable Care Act Tip Sheets on Enrollment, Prevention and Wellness, Oral Health,Churning, Therapies, Immigrant Status, and Aging Out, • Alphabet Soup (glossary) and ABCs of Health Care, • 2014 Activities & Accomplishments of Family-to-Family Health Information Centers, • 2012-2013 F2F Data Report, • Flu Facts for Families of CYSHCN, and • One-page Health and Wellness Updates. 8
HIGHLIGHTS  accomplishments  We are particularly proud of the following work accomplished over the last year  Demonstrated...
OUR FUTUREdirections strategic Our Board of Directors has outlined the following strategic directions for 2015-2020: Family Voices will advance access to and quality of care for families. Family Voices will engage broad populations of families in service and leadership development. Family Voices will grow and support leadership among culturally and linguistically diverse families as well as strengthen youth leadership as the next generation of leaders/advocates. Family Voices will strengthen the voice of families to influence health policymaking at all levels. Family Voices will grow its visibility: as a networked organization with resources in every state; at the national level to drive quality and access and family-centered supports; and with partners to form alliances to increase the strength of unified family voices. Family Voices will enhance the capacity of its State Affiliate Organizations to increase their reach and number of families served. Family Voices will grow and support state affiliates as non-profit advocacy organizations that can put a face on the issues of families and children and act as catalysts for systems change. Family Voices will work to ensure Family-to-Family Health Information Centers have the capacity to be a trusted resource to families of children with special health care needs/disabilities. Family Voices will strengthen its organizational health and vitality. Our Impact in FY 2014: • Almost 55 thousand website visits were logged. • F2Fs provided assistance, training, and/or information to over 1.3 million people in FY 2013 (the latest data available). • Over 2,550 Bright Futures Family Pocket Guides (English) and 590 (Spanish) were disseminated. • 82% of family leaders rated the assistance provided by Family Voices staff/consultants as having significant or much value. • The number of subscribers to the weekly Washington Update e-newsletter grew by 36%; Friday’s Child subscribers grew 14%. • 77% of families leaders indicated that Family Voices provided significant or much value in assisting them in incorporating cultural and linguistic competence into their work. • Family leader listservs facilitated by Family Voices averaged over 100 messages per month. “The resources, information and tools we get from Family Voices, and the information we get from other family organizations about what they are doing and how they are having an impact, strongly support our efforts, keep us from wasting time on recreating the wheel, and give us great ideas.” - staff of an F2F ”In this one handy, easy-to-read guide [Bright Futures Family Pocket Guide], multiple resources and pearls of wisdom are provided to help parents navigate the complex health care system. Raising children takes a lot of love and care, and the more information parents and families have, the better. I would encourage parents to take the time to review this information.” - father of four and physician • 75% of participants in the family leader meeting, The Power of Partnerships, indicated they had gained a great deal or much new information to help families develop leadership skills and advocate for healthcare policies. 9
OUR FUTUREdirections strategic Our Board of Directors has outlined the following strategic directions for 2015-2020  Famil...
OUR FINANCES sustainability 2013 ASSETS Current Assets Cash and cash equivalents Grants and contracts receivable Prepaid expenses Total current assets $ 378,094 129,062 6,455 513,611 52,975 402,579 9,428 464,982 15,829 (13,928) 1,901 15,829 (12,347) 3,482 $ 515,512 468,464 Equipment and Improvements Office equipment Accumulated depreciation Net equipment 2012 Restated Total assets LIABILITIES AND NET ASSETS Current Liabilities Accounts payable Accrued liabilities Deferred revenue Total current liabilities $ 64,274 38,261 21,969 124,504 38,762 45,704 84,466 359,652 31,356 391,008 365,211 18,787 383,998 $ 515,512 468,464 Commitment and Contingencies Net assets Unrestricted Temporarily restricted, KASA Total net assets Total liabilities and net assets 10
OUR FINANCES  sustainability      2013          ASSETS Current Assets    Cash and cash equivalents     Grants and contract...
2013 UNRESTRICTED Public Support Grants and contracts Contributions Fundraising Interest and other income Net assets released from restrictions Total revenues 2012 Restated $ 955,824 32,065 - 20,774 50,045 1,104,484 30,186 2,500 2,271 4,033 1,058,708 1,143,474 Expenses Community awareness Management and general Fundraising 1,019,079 23,863 21,325 1,079,794 35,524 25,737 1,064,267 1,141,055 (5,559) 2,419 62,614 (50,045) 12,569 13,800 (4,033) 9,767 7,010 12,186 383,998 419,220 Adjustment to prior period - (47,408) Net assets at end of year $ 391,008 383,998 Total expenses Change in unrestricted net assets TEMPORARILY RESTRICTED Contributions Release of restrictions Change in temporarily restricted net assets Change in total net assets Net assets at beginning of year, originally reported Where the Dollars Go Where the Dollars Go: Programs......................................... $1,019,079 Management & General.....................$23,863 Fundraising...........................................$21,325 . Management & General 2.25% Fundraising 2.00% Programs 95.75% 11
    2013          UNRESTRICTED Public Support    Grants and contracts     Contributions     Fundraising     Interest and o...
OUR TEAM Board Molly Cole, President (Connecticut) Director, Connecticut Council on Developmental Disabilities Marcia O’Malley,Vice-President (Nevada) Owner & Video Specialist, Mindful Media Services Leolinda Parlin, Treasurer (Hawai‛i) Project Director, Hawai‛i Pediatric Association Research and Education Foundation Grace Pushparany Williams, Secretary (Maryland) Family Leader and Advocate Julie Beckett (Iowa) Co-Chair of the Parent Advisory Group with the Section on Home Care under the American Academy of Pediatrics Merrill Friedman (Virginia) Director, Disability Policy Engagement,Wellpoint, Inc. Renee Turchi, M.D. (Pennsylvania) 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 (Washington, D.C.) Senior Specialist, Policy and Constituency Issues, Association of American Medical Colleges Josie Woll (Hawai‛i) Retired, Executive Director, Family Voices of Hawai‛i Staff Consultants Cristine Marchand, Executive Director Lynda Honberg, Director of Strategic Partnerships Lorenzo (Larry) Leyva , Director of Finance Natasha Tapia, Executive Assistant/Office Manager Frances Torres, Administrative Assistant Trish Thomas, Director of Diversity and Outreach Nora Wells, NCFPP Co-Director Bev Baker, NCFPP Co-Director Ashlee Richey, NCFPP Program Assistant Leslie Carroll, IMPACT Project Director Melissa Vickers, IMPACT Project Coordinator 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 Organizational Members Focus Empowerment Group Health Care Transitions Company, LLC HIMSS – Transforming Healthcare IT PACER Center PFCC Partners, Inc. PSA Healthcare SAOs 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 can only be one SAO per state. There are 43 SAOs nationwide. Most F2Fs are also SAOs. F2F s 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. F amilies It is estimated that there are from 11.2 million (15.1%)1 to 14.6 million (19.8%)2 children with special health care needs under the age of 18 in the United States. More than 1 in 5 households with children in the United States have at least one child with special health care needs. This translates into almost 9 million households nationally.1 About 60% of CSHCN experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition.1 Families of these more complex children are the group most frequently contacting F2F HICs for assistance. CSHCN account for 40% or more of medical expenditures for children overall.1 1 National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 05/01/2014 from www.childhealthdata.org. 2 National Survey of Children’s Health. NSCH 2011/12. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 05/01/2014 from www.childhealthdata.org. 12
OUR TEAM Board  Molly Cole, President  Connecticut   Director, Connecticut Council on Developmental Disabilities Marcia O ...
Map of SAOs, F2F & F s, amilies of CYSHCN per State 191052 21814 16223 148692 96808 43961 60447 86570 810507 16133 166811 168717 19263 14796 135770 55088 18283 329120 374938 212736 49815 391454 350670 56736 232925 94253 196604 152633 304358 196786 126408 133451 105841 83865 155917 304632 28779 518443 96529 707050 158254 453944 42480 43287 203039 CT: 113739 RI: 32189 NJ: 239279 DE: 27430 MD: 164024 DC: 12747 nn # of Families with CSHCN in state1 States where SAO and F2F is within the same organization States where SAO is within a different organization from the F2F States with F2F only; SAO in progress States with National Family Voices staff/consultant/national board member AK: Stone Soup Group (SAO, F2F) AL: AR: AZ: CA: CO: CT: DC: DC: DE: FL: GA: HI: IA: ID: IL: IN: KS: MS: Family Voices of Mississippi - Family 2 Family (SAO,F2F) Family Voices of Alabama (SAO, F2F) Arkansas Disability Coalition (F2F) Raising Special Kids (SAO, F2F) Support for Families of Children with Disabilities (SAO, F2F) Family Voices Colorado (SAO, F2F) PATH Parent to Parent of Connecticut (SAO, F2F) Family Voices of DC (SAO) Advocates for Justice and Education (F2F) Delaware Family Voices (SAO, F2F) Family Network on Disabilities (SAO, F2F) Parent to Parent of Georgia (F2F) Hilopa'a Family-to-Family Health Information Center (F2F) ASK Resource Center( SAO, F2F) Idaho Parents Unlimited, Inc. (SAO, F2F) The Arc of Illinois F2FHIEC (SAO, F2F) Family Voices Indiana (SAO, F2F) Families Together, Inc. (SAO, F2F) MT: NC: ND: NE: NH: NJ: NM: NV: NY: OH: OK: OR: PA: RI: SC: SD: TN: Parents Lets Unite for Kids (SAO, F2F) Exceptional Children's Assistance Center (SAO, F2F) Family Voices of North Dakota (SAO, F2F) PTI Nebraska (SAO, F2F) New Hampshire Family Voices (SAO, F2F) Statewide Parent Advocacy Network of NJ (SAO, F2F) Parents Reaching Out (SAO, F2F) Family TIES of Nevada (SAO, F2F) Parent to Parent of New York State (SAO, F2F) Family Voices of Ohio (SAO, F2F) Oklahoma Family Network (SAO, F2F) Oregon Family-to-Family Health Information Center (F2F) Parent Education & Advocacy Leadership Center (SAO, F2F) Rhode Island Parent Information Network (SAO, F2F) Family Connection of South Carolina, Inc. (SAO, F2F) South Dakota Parent Connection (SAO, F2F) Family Voices of Tennessee at Tennessee Disability Coalition (SAO, F2F) TX: Texas Parent to Parent (SAO, F2F) KY: Kentucky Commission for Children with Special Health Care Needs (SAO, F2F) LA: Bayou Land Families Helping Families (SAO, F2F) MA: Massachusetts Family Voices at Federation for Children with Special Needs (SAO, F2F) MD: Parents Place of Maryland (SAO, F2F) ME: Maine Parent Federation (F2F) MI: MI: MN: MN: MO: UT: Utah Family Voices (F2F) VA: Family to Family Network of Virginia (Center for Family Involvement @ VCU) (F2F) VT: Vermont Family Network (SAO, F2F) WA: PAVE/Family Voices of Washington (SAO, F2F) Michigan Family Voices (SAO) Michigan Public Health Institute (F2F) Family Voices of Minnesota (SAO) Pacer Center (F2F) Missouri Family-to-Family Resource Center at UMKC-IHD (F2F) WI: WV: WY: WY: Family Voices of Wisconsin (SAO, F2F) WV Parent Training and Information, Inc. (SAO, F2F) Family Voices of Wyoming at UPLIFT (SAO) Wyoming Institute for Disabilities (WIND) (F2F) National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 05/01/2014 from www.childhealthdata.org. 1 13
Map of SAOs, F2F   F s, amilies of CYSHCN per State 191052 21814  16223  148692  96808 43961  60447  86570  810507  16133 ...
CONTRIBUTORS Family Voices is very grateful for the donations and in-kind contributions provided by generous individuals and organizations in FY 2014. Donors $5,000 - $9,999 Nicolas Arango $1,000 - $4,999 John Ellis $500 - $999 James Perrin, MD $200 - $499 Robert & Martha-Jean Madison PASCO Richard Roberts Josie Woll Fredericka Wolman $100 - $199 Betsy Anderson Susan Badeau Billy Beechler Diane Behl Cristine Marchand Carolyn Richardson Diane Suznovich TRUIST Renee Turchi United Way of Central New Mexico $50 - $99 Beverly Baker Diana Denboba Marie Mann Suzanne Stevens Melissa Vickers Peters Wilson < $50 Tamara Bakewell James Bryant Harry Gewanter Jodie Goodman Michele Juda Grace Pushparany Williams Jack Waters Power of Partnerships Sponsors, May 2014 $5,000 - $9,999 Hilopa’a Family-to-Family Health Information Center McDermott Will & Emery $1,000 - $4,999 Julie Beckett Child and Adolescent Health Measurement Initiative Children’s Hospital Association Hawai‛i MCH LEND Program Hawai‛i Pediatric Association Research and Education Foundation Lake Research Partners Lucile Packard Foundation for Children’s Health National Center for Children’s Vision & Eye Health At Prevent Blindness Tom & Jane Tonniges $500 - $999 Association of Maternal and Child Health Programs Community Catalyst Lynda Honberg In Memoriam In Memory of Polly Arango $100 - $500 Mary Bednarowski Betsy A. Behnke Leolinda Parlin In Memory of Nick Arango $1000 - $5000 Mary Bednarowski Gary & Jeanne Johns Little Rapids Corporation Sputnik Moment $200 - $499 National Center for Medical Home Implementation Apex Education Catalyst Center DeLong Lithographics James Bryant Kathleen Egan Karen Kuhlthau National Center for Hearing Assessment and Management Parent to Parent USA Susan Sherry Statewide Parent Advocacy Network of New Jersey National Institute for Children’s Health Quality Josie Woll Youth Transitions Collaborative $100 - $199 Ben & Donna Gore Olsen Robert & Jean Johnson $500 - $999 Le Huu Arao-Nguyen Annelise Bauer Leslie Malek Chavez Don & Sally Goldenbaum Robert Marks Leolinda Parlin Gerald Stadtmueller <$500 Sophie Arao-Nguyen Oma Jones Gloria Molinar 14 Linda Madison Papageorge, Ph.D. Cristine Marchand Paul Newacheck Jean Trainor $50 - $99 Sara Bachman Diane Behl Bonnie Cady Margaret Curran Family Voices of Indiana Audi & Culby Keene New Hampshire Family Voices Calvin Sia, MD Diane Suznovich < $50 Jim & Sherry Callaghan Bob and Mary Cook Linda Lindeke Joseph & Katherine O’Reilly James Potter Florene Poyadue Linda Rowley Ruth Walden Thomas Olson Pat Wildsmith In Memory of Andrew Van Kleunen Mary Kathryn Van Kleunen In Memory of Dirk Vandersloot Beverly Baker In Memory of Glen Gallivan Thomas Flower
CONTRIBUTORS Family Voices is very grateful for the donations and in-kind contributions provided by generous individuals a...
PARTNERS/WORKGROUPS Family Voices is very appreciative of the many organizations who provided opportunities to collaborate on behalf of families of CYSHCN in FY 2014. American Academy of Pediatrics: • Bright Futures Steering Committee • Campaign for Dental Health • Council on Children with Disabilities • Family-Centered Care Pilot Project • Medical Home Implementation National Center Advisory Committee Genetic Alliance National Genetics Education and Consumer Network Indian Health Service Maine Equal Justice Partners Maternal and Child Health Technical Expert Panel on the National Survey of Children with Special Health Care Needs Association of Maternal & Child Health Programs: • Family and Youth Leadership Committee • Family Engagement Survey Work Group • National Consensus Framework for Improving Quality Systems of Care for Children/Youth with Special Health Care Needs Workgroup • Workgroup on Maternal and Child Health Transformation 3.0 • Workgroup on Measuring Family Engagement in Title V Block Grants Mountain States Regional Genetics Collaborative • Advisory Council • Advocacy Workgroup • Emergency Preparedness Workgroup • Medical Home Workgroup • Newborn Screening Workgroup National Committee on Quality Assurance National Collaborative for Innovation in Quality Measurement Foster Care Advisory Panel Boston Children’s Hospital Center of Excellence for Pediatric Quality Measurement National Stakeholder Panel New Mexico Early Hearing Detection & Intervention Advisory Board New Mexico Maternal Child Health Leadership Collaborative Catalyst Center Advisory Committee Center for Medical Home Improvement Advisory Group National Center for Hearing Assessment and Management Family Advisory Committee Centers for Disease Control and Prevention • CYSHCN and Flu Prevention • Family Stories on Emergency Preparedness The National Center for Children’s Vision and Eye Health at Prevent Blindness National Institute for Children’s Health Quality • Quality Improvement Project • Working to Improve Sickle Cell Healthcare Project Child and Adolescent Health Measurement Initiative Executive Committee Children’s Health Group National Institute of Arthritis and Musculoskeletal and Skin Diseases National Multicultural Outreach Initiative: American Indian, Alaska Native, and Native Hawaiian Consortium of Citizens with Disabilities Family Voices Bright Futures Family Network: • American Academy of Pediatrics • Community Café • La Leche League International • MHP Salud • Mothers of Supertwins • National Center for Farmworker Health • National Foster Parents Association • National Healthy Start Association • National Indian Child Welfare Association • National Military Family Association • Parent Teacher Association • Today’s Child Communications • Washington State Fathers Network Technical Expert Panel on the National Survey of Child Health Technical Expert Panel on Consumer Assessment of Health Plans and Services Title V Region 6 Directors Committee 15
PARTNERS WORKGROUPS Family Voices is very appreciative of the many organizations who provided opportunities to collaborate...
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 Family Voices Makes a Difference Did You Know?* • 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 U.S. 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. • 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. • Children with SHCN often have more than one condition and functional difficulties in more than one area that impact their daily lives, such as breathing, communicating, chronic pain, learning, moving around, behavior, or challenges in making and keeping friends. • 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. • We offer 1:1 family support, peer mentoring, and leadership development. • 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. 16
One in Five Families with Children Has at Least One Child with Special Health Care Needs  Join Family Voices National Memb...
IMAGINE LEAD Celebrate etarbeleC DAEL ENIGAMI quality health care for all children JOIN THE FAMILY VOICES TEAM Add your voice to get the word out to more families, reach out to new partners, and provide extended support to the Family Voices network of family and youth leaders across the country. Join our ONE in FIVE Campaign! 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 • www.fv-ncfpp.org • www-fv-impact.org • www.fvkasa.org 18 Copyright © 2014 by Family Voices Design by Peggy Curran
IMAGINE LEAD Celebrate  etarbeleC DAEL ENIGAMI quality health care for all children  JOIN THE FAMILY VOICES TEAM  Add your...