A report of the activities and finances in fiscal year 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 Gu a 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 Merle McPherson MD 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
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 Caf 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...