ANNUAL REPORT 2010-2011 - Family · PDF fileFamily Voices aims to achieve family-centered ... Policy Co-Directors Janis Guerney, Esq. and ... Families’ Key Roles in Raising Healthy

ANNUAL REPORT2010-2011

OUR MISSION

Family Voices aims to achieve family-centered care for all children and youth with specialhealth care needs and/or disabilities.

Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

OUR VISION

Every child and youth with special health care needs and/or disabilities receives family-centered care.

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Dear Friends,

As Family Voices’ 2008 – 2011 Strategic Plan drew to a close in fiscal year 2010 – 2011, Family Voices celebrated successes in all four areas of Strategic Direction:

Infrastructure: Family Voices increased the number of State Affiliate Organizations (SAOs) from 30 to 36. Members showed their support of Family Voices by contributing extra and often double with their membership registration or renewal. As well, the Infrastructure Team adapted three organizational self-assessment tools for SAOs to use in creating their Action Plans: Organizational Development, Cultural Competence, and Non-Profit Management.

Policy: Policy Co-Directors Janis Guerney, Esq. and Brooke Lehmann, Esq. continued to keep special health care needs and disabilities in the forefront of consideration by policy makers in Washington. Family Voices was invited to present at the White House numerous times and on each occasion brought families to share their stories and advocate for health care in the area of special health care needs. Family Voices staff members were invited to join the strategic planning process of the Children With Special Health Care Needs (CSHSN) Division of the Maternal and Child Health Bureau (MCHB). Sophie Arao-Nguyen and staff member Trish Thomas also participated in the strategic planning process for the Administration on Developmental Disabilities (ADD) at both the national and regional levels. As well, Trish and Board Member Molly Cole were invited to participate in the “Healthy People 2020 Initiative.”

Diversity: Family Voices supported the New Mexico-based organization Education for Parents of Indian Children with Special Needs (EPICS) with their strategic planning process. Additionally, FV facilitated connections and conversations thatled to EPICS applying for funding from the Administration for Native Americans (ANA) to create a new program that would provide support for American Indians with disabilities.

Funding: Funding for the National Center for Family and Professional Partnerships (NCFPP) as well as IMPACT was continued. Family Voices also received a grant from the Lucile Packard Foundation for Children’s Health for strategic planning activities. Additionally, grants from the National MCH Data Resource Center, The Child and Adolescent Health Measurement Initiative, and the Association of Maternal Child Health Programs were also continued. New grants were received from the Silicon Valley Independent Living Center and Genetic Alliance, Inc.. The 2011 Family Voices Conference and Gala brought visibility as well as funds to the organization.

We thank you for your partnership as we all work to keep families at the center of children’s health care. We ask for your continued support toward realizing our vision that every child and youth with special health care needs or disabilities receives family-centered care, related services, and assistance.

With warm regards,

Ruth R. WaldenPresident, Board of Directors

Sophie Arao-Nguyen, PhDExecutive Director

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PROVIDING LEADERSHIP ON FAMILY/PROFESSIONAL PARTNERSHIPS

Family Voices’ National Center for Family/Professional Partnerships (NCFPP) is a cooperative agreement with the Maternal and Child Health Bureau. In its sixth year during FY 2010 – 2011, this project continues to provide leadership on effective family/professional partnerships for achieving family-centered care. The NCFPP Technical Assistance Team, Policy Team, and National and Regional Field Coordinators have worked closely to:

1) Provide Technical Assistance to Family-to-Family Health Information Centers (F2F HICs) and family leaders through individualized assistance, trainings, and opportunities for peer networking in specific areas such as family leadership, cultural competence, public policy advocacy, organizational development, and grant management. From April 2010 through February 2011, the NCFPP responded to 1,612 requests for technical assistance and provided training opportunities to 5,137 families, family leaders, and professionals through 98 presentations,conferences, and meetings.

2) Inform families, family leaders, and professionals with resources and materials to enhance the understanding and practice of partnerships. In addition to monthly editions of Friday’s Child newsletter and weekly Washington Updates, new

materials included the Annual F2F HIC Data Report, articles in Academic Pediatrics, the F2F HIC Promising Practice Series, and public service announcement videos about the NCFPP and F2F HICs.

3) Partner with the National Centers and otherKey Stakeholders, including: • Centers for Disease Control to conduct a survey on family opinions and experiences with flu prevention and treatment;• National Center for Ease of Use to compile and share best practices in serving non-English speaking families; and• NICHQ to provide family input to the sickle cell quality improvement initiative.

4) Document evidence of family/professional partnerships and family-centered care. A Resource Repository was developed on the new NCFPP website and includes Evidence-Based Practices compiled from research and practices shared by F2Fs. In the fall of 2011, funding was secured and work begun on reliability and validity testing of the Family Centered Care Self-Assessment Tool.

NEW NCFPP WEBSITE! www.fv-ncfpp.org

F2F HIC’s Reporting Impact of NCFPP by Program Area

Health Care Policy

Cultural competence

Partnership Development

Family Leadership Development

Grant Management/Reporting

Technology

Navigating community-based services

Youth Leadership/Transition

Screening

Organizational Development

98%

98%

95%

95%

95%

93%

91%

87%

85%

76%

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MEETING NEEDS FAMILY-TO-FAMILY

. . . BY PROVIDING INDIVIDUAL AND FAMILY SUPPORT

A Massachusetts parent praises the support provided by Mass Family Voices at the Federation for Children with Special Needs, FV State Affiliate and F2F HIC:

“I wanted to take a moment to thank you for everything you have done to assist me through the Medicaid application process for my son. I found the Medicaid system to be overwhelming, intimidating, and frustrating. Without your assistance and guidance throughout, I likely would not have completed the process. I am so grateful not only that the Massachusetts Family-to-Family Health Information Center exists, but that it is run by someone who has gone through the Medicaid application process themself and is sensitive to the emotions of parents.”

lives. We are seeing many of our graduate parents make a difference in programs and policies at the local, regional, and state level.”

. . BY PARTNERING WITH OTHERS

Julie Finhom, the F2F HIC Project Director at Parents Are Vital In Education (PAVE), home to the FV State Affiliate in Washington state, highlighted their work with partners:

“The most significant accomplishment in this reporting period is that we have encouraged diverse advocacy agencies to join forces. Our connection with advocates for mental health, aging, disability, and other public programs has become very strong. Protecting children with special health care needs during these tough economic times has been challenging. However, joining the efforts of other advocacy organizations and inviting them to join our causes has strengthened our family voice.”

. . . BY THE NUMBERS

In its role as Technical Assistance provider to the Family-to-Family Health Information Centers, Family Voices aggregates data from each center. From June 1, 2010 through May 31, 2011, F2F HICs accomplished the following:

OUTREACH: Provided health care information/education/training to over 980,000 families with CSHCN to assist them in accessing information and services.

INDIVIDUAL ASSISTANCE: Responded to over 230,000 requests for assistance from over 102,000 families and 30,000 professionals.

TRAININGS/MEETINGS: Trained 181,135 families and professionals and participated in 18,150 meetings.

LISTSERVS: Reached 329,586 families and professionals through listservs and 709,255 families and professionals through newsletters.

PUBLICATIONS: Disseminated over 1.73 million fact sheets, guidebooks, brochures, and other materials.

PARTNERSHIPS: On average, each F2F HIC partnered with 16 state-based organizations and 11 community-based organizations.

. . . BY HELPING FAMILIES TO BECOME LEADERS

PEAL (Parent Education Advocacy Leadership) Center, the FV State Affiliate and F2F HIC in Pennsylvania, offered its intensive seven-month Leadership Institute to families of Hispanic background, recruited through the use of cultural brokers. Twenty-three parents successfully completed the program. Interpreters assisted with translation, and all handouts and presentations were available in Spanish. Liz Healey, Executive Director, sums up the impact of the Institute:

“We help parents gain knowledge and confidence to take an active role in the community andinfluence policies that will impact their 4

FAMILY VOICES’ PROJECT HIGHLIGHTS

Project IMPACTHealth and Wellness across the Life Span

The 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. This work is accomplished in collaboration with Family-to-Family Health Information Centers (F2Fs), other national health and chronic disease prevention partners, the American Academy of Pediatrics, and the Maternal and Child Health Bureau.

This year IMPACT: developed a Health and Wellness Initiative with F2Fs in North Carolina and Utah; focused on effective messaging for families on life course, social determinants of health, and the key role of families in improving health and wellness; and provided ongoing mentorship for families as well as engagement in Maternal and Child Health Block Grant Review.

“Creating Bright and Healthy Futures for Families”

“Paving the Way for Disabled Youth and their Adult Allies”

Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. Over the past year, the youth have continued to make their voices heard, producing six new publications and adapting five existing resources for kids ages 9-12. KASA hosted two webinars, one about the KASA Paraprofessional

Toolkit and the other providing an overview of KASA’s work, resources, and current activities. KASA youth presented at multiple workshops and created a facilitation training as well as an anti-bullying training in response to a partner’s request. KASA also conducted a national survey to assess interest in launching state KASA chapters. As a result, KASA began interviews with potential state chapters and completed a KASA Chapter Manual to offer tips and tools for newly-forming state chapters.

IMPACT also completed the Bright Futures for Families Pocket Guide which will be published by spring of 2012. The project produced Bright Futures for Families newsletters and fact sheets and posted them on the Bright Futures for Families Website, and engaged in multiple presentations including the FV National Conference 2011: Bright Futures - Reinforcing Families’ Key Roles in Raising Healthy Children.

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2010 – 2011 Fiscal Year Highlights

Support for EPICS and American Indians with Disabilities. Family Voices national staff continues to facilitate networking and partnership building with diverse and underserved populations. This is part of FV’s initiative to increase access to quality care for children and families of all backgrounds and cultures. In July 2010 Family Voices Executive Director Dr. Sophie Arao-Nguyen and two other national staff members met with the New Mexico-based organization Education for Parents of Indian Children with Special Needs (EPICS) to assist with EPICS’ strategic planning process. From this collaboration, a meeting was held in New Mexico with Sharon Lewis of the Administration on Developmental Disabilities (ADD) of the Administration for Children and Families (part of the U.S. Department of Health and Human Services). Family Voices then facilitated a meeting in Washington, DC with ADD, EPICS, the Administration for Native Americans (ANA), and Maternal and Child Health Bureau (MCHB). These meetings helped ADD, ANA, and MCHB become aware of EPICS’ work with the goal of paving the way for future collaboration. FV also provided mentoring support for EPICS in grant writing skills and data preparation.

In October FV’s Executive Director attended planning meetings in Washington, DC for the Division of Services for Children with Special Health Care Needs (DSCSHCN) with staff members Nora Wells and Betsy Anderson. Also in October, FV’s Trish Thomas attended planning meetings for MCHB’s Genetics Division in Washington, DC, as well as ADD’s Family Support Regional Planning Listening Session in Racine, Wisconsin. The same month, FV’s Executive Director attended another ADD Regional Planning Listening Session in Denver, Colorado, followed by participation in ADD’s National Strategic Planning session in Washington, DC in January. It is significant that Family Voices is being asked to play such an important role in helping set the trajectory for the next ten years for national programs that will support adults and children with special health care needs.

Funding for Family Voices’ Strategic Planning from Lucile Packard Foundation for Children’s Health. In December 2010 Dr. Arao-Nguyen requested funds from the Lucile Packard Foundation for Children's Health to support Family Voices’ Strategic Planning process in 2011, and the funding was granted.

Participation in Strategic Planning for National Programs Related to Special Health Care Needs. In the Fall and Winter of 2010 – 2011 Family Voices staff was funded to participate in several strategic planning sessions with national agencies to provide input related to policies and programs for children with special health care needs.

Launch of the New Family Voices Website. In December 2010 Family Voices brought online a new website designed to provide easier access to a more full range of information for all Family Voices stakeholders. The website continues to evolve and grow as more features are added to meet the needs of Family-to-Family Health Information Centers (F2FHICs), State Affiliate Organizations (SAOs), families, agencies, partners, and the media.

Family Voices Staff

www.familyvoices.org

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Family Voices Contribution to the 75th Anniversary of the Social Security Act and Honoring of Staff. At this event in Washington, DC in January 2011 three people affiliated with Family Voices contributed to the video for the 75th Anniversary: Betsy Anderson, who was then IMPACT Project Director; Trish Thomas, FV National Technical Assistance/Partnership Coordinator; and John Hoffman, a family leader from Minnesota. Trish Thomas was presented the HRSA/MCHB Director’s award in recognition of her contributions to the health of infants, mothers, children, adolescents, and CSHCN.

of state Title V and MCH leaders and partners. Co-locating these two conferences created abundant opportunity for cross-pollination of information and discussion of current, critical topics, such as health care reform, family-centered care, and health information technology. At the Gala dinner on Monday, February 14, 2011, Family Voices and AMCHP hosted a shared celebration honoring Polly Arango and Representative John Dingell (MI), both of whom dedicated their lives to families and children. Family leaders and advocates in the states were also honored for continuing to provide invaluable family-to-family support, timely resources, and quality information to other families who must navigate complex health care systems.

Retirement/Resignation of two Family Voices Leaders and Hiring of New Staff. June of 2011 marked the retirement/resignation, respectively, of Betsy Anderson, Project Director for IMPACT, and Naomi Ortiz, Project Director for KASA. Family Voices would like to extend our deep appreciation to Betsy and Naomi for their years of dedicated service. In the same month, Deputy Director Rachel Rodriguez also left the staff to focus on raising her new son, Mateo. Rachel continues to work with Family Voices as a consultant. Shortly afterward, Leslie Carroll was hired as the new Director of the IMPACT Project, and Jennifer Thomas was hired as the new Director of KASA. Family Voices is grateful that our team continues to grow and evolve with the help of so many caring and dedicated partners, families, and agencies.

Family Voices National Conference and Gala. This series of events took place in Washington, DC in February of 2011 in conjunction with AMCHP’s national conference. The theme of the FV conference was Working Together to Improve Maternal and Child Health. It provided opportunities for hearing, learning, connecting, and networking with the wide national network of Family Voices leaders as well as AMCHP's wider national network

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WHERE THE DOLLARS GO

PROGRAMS $1,000,288MANAGEMENT & GENERAL $ 37,130FUNDRAISING $ 26,500TOTAL $1,063,918

PROGRAMS 94%MANAGEMENT & GENERAL 3.5%FUNDRAISING 2.5%

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FAMILY VOICES

STATEMENTS OF FINANCIAL POSITION

June 30, 2011 and 2010

ASSETS

2011 2010

Current Assets

Cash and cash equivalents $ 281,133 313,361

Grants and contracts receivable 249,125 181,932

Other current assets 7,096 14,113

Total current assets 537,354 509,406

Equipment and Improvements

Office equipment 42,509 42,509

Leasehold improvements 22,964 22,964

65,473 65,473

Accumulated depreciation (53,012) (49,900)

Net equipment 12,461 15,573

Total assets $ 549,815 524,979

LIABILITIES AND NET ASSETS

Current Liabilities

Accounts payable $ 27,887 21,474

Accrued liabilities 62,773 57,762

Total current liabilities 115,595 79,236

Commitment and Contingencies

Net assets

Unrestricted 425,200 433,110

Temporarily restricted, KASA 9,020 12,633

434,220 445,743

Total liabilities and net assets $ 549,815 524,979

Full audit report available upon request

Deferred Revenue 24,935 -

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Directors on Family Voices’ Board: Molly Cole, Wendy Alegra Jones, Merle McPherson, Marcia O’Malley, Grace Pushparany Williams,

Carolyn Richardson, Susan Sherry, Scott Suzuki, Thomas Tonniges, Renee Turchi, Ruth Walden, and Josie Woll.

FAMILY VOICESSTATEMENTS OF ACTIVITIESAND CHANGES IN NET ASSETS Years Ended June 30, 2011 and 2010

2011 2010UNRESTRICTEDPublic Support

Grants and contracts $ 976,773 1,030,876Fundraising 6,565 475Contributions 59,397 14,553Interest and other income 4,966 12,927

Net assets released from restrictions 8,307 17,170

Total revenues 1,056,008 1,076,001

ExpensesCommunity awareness 1,000,288 1,012,755Management and general 37,130 80,338Fundraising 26,500 14,192

Total expenses 1,063,918 1,107,285

Change in unrestricted net assets (7,910) (31,284)

TEMPORARILIY RESTRICTEDContributions 4,694 12,315Release of restrictions (8,307) (17,170)

Change in temporarily restricted net assets (3,613) 4,855

Change in total net assets (11,523) (36,139)

Net assets at beginning of year 445,743 481,882

Net assets at end of year $ 434,220 445,743

See Notes to Financial Statements.

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CONTRIBUTORS

$10,000 - $14,999John ArangoLucile Packard Foundation for Children's Health

$5,000 - $9,999Michael & Kathleen EganMerle McPherson, MDPachamama

$1,000 - $4,999ABT AssociatesAmerican Academy of PediatricsSophie Arao-Nguyen, PhDArlington Pediatric CenterAssociation of Maternal and Child Health ProgramsMary & Keith BednarowskiChildren's Hospital of MichiganMartha EganPatrick & Deborah EganJohn EllisFamily Voices Region 1Family Voices Region 2Family Voices Region 3Family Voices Region 4Michael Fraser, PhD, CAETom & Joni GannonInstitute for Healthcare ImprovementKathleen Kirk BishopParents Place of Maryland, SAOPASCODr. Richard & Linda RobertsPatricia & Luis StelznerTom & Jane Tonniges, MD, FAAPUConn Health Center for Excellence in Developmental Disabilities Education, Research, and Service Utah State University

$500 - $999Karen AnagnostAnonymousJon Bates, MDChild and Adolescent Health Measurement Initiative Yoshiko DartKevin EganDan FordCarolyn GleasonTawara Goode, MAIdaho Parents Unlimited, Inc., SAOAnn MarchettiNational Association of Children’s Hospitals and Related InstitutionsPACER CenterPonderIdeaWorksRhode Island Parent Information Network, SAOMary Margaret Richards, PhDCarolyn RichardsonSteve & Angelique RossSEDLSusan SherrySJA Class of '60Mikiko StebbingSupport for Families of Children with Disabilities, SAO

$200 - $499Altarum InstituteMissi BarankoJulie Beckett, MABoston University School of Public HealthSuzanne BronheimChildworks, PLLCColorado Nonprofit DevelopmentDelong LithographicsDemocracy in ActionCecil Doggette Health Services for Children with Special Needs, Inc.

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CONTRIBUTORS

$200 - $499Juno Duenas Family Voices CaliforniaEASi Therapy and Diagnostic Services, Inc. EnvisionIT Solutions Exceptional Children's Assistance Center, SAO Families Together Inc., SAO Family Network on Disabilities, SAO Family Voices Colorado Federation for Children with Special Needs, SAO Janis Guerney, Esq.Marilyn HartzellOregon Center for Children and Youth with Special Health NeedsDavid & Janie Heppel Lynda Honberg Melanie Kauffman Family TIES of NevadaKaren Kuhlthau Andrew Lauritzen Law Offices of California National Center for Hearing Assessment & Management Steven Newby Ben & Donna Olsen Marcia O'Malley Linda Papageorge, PhD Parents, Let's Unite For Kids, SAO PTI Nebraska, SAO Linda & Tom Reiley Rachel & Julio Rodriguez Lisa Schaffran Rhode Island Parent Information NetworkAshley Schempf HRSA/MCHBTari Hartman Squire, EIN SOF CommunicationsStatewide Parent Advocacy Network of New Jersey, SAOBonnie StricklandTennessee Disability Coalition

$200 - $499The Arc Wisconsin, SAO The Family Café, Inc. Sabra Townsend Philadelphia Department of Public Health/ St. Christopher's HospitalRenee Turchi, MD Vermont Family Network, SAO Jean & Tom Voelkel Josie Woll

$100 - $199Rachel Abramson HealthConnect OneBecky Adelmann Carolyn Allshouse Family Voices of MinnesotaKaren Anzola, M.Ed Diana MTK Autin Annelise & Brad Bauer Betsy Behnke Estrellita "Lo" Berry REACHUP, IncElizabeth Biebel Maureen Bisognano John Blomquist Kelly & John Bunnell Bonnie Cady LaShay Canady CDHCP-ColoradoJoan Christopher, Esq. Molly Cole Lisa Cook-Gordon Michigan Family-to-Family Health Information CenterWilliam Cooley Center for Medical Home ImprovementBarbara Crabb Terri Dawson Wyoming Family-to-Family Health Information Center

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CONTRIBUTORS

$100 - $199Beth DeHoff Riley Child Development CenterNancy DiVenere Parent to Parent USAPaula Duncan Eileen Elias Donene Feist Family Voices of North DakotaSally Fogerty John & Violet Foley Eileen Forlenza Colorado Department of Public Health and EnvironmentKris Green State of AlaskaKim Griffith Kenn Harris New Haven Health StartMelanie Hayden National Initiative for Children's Healthcare QualityRuth Hill, PhD John Hoffman Family Voices of MinnesotaRoger Holt PLUKCharles Homer National Initiative for Children's Healthcare QualityLisa Huckleberry MI Dept. of Community Health/CSHCSRachel Hutson Colorado Department of Public Health and EnvironmentWendy Jones, MSW Barbara Katz Family Voices of WisconsinLacey & Jason Keene Melissa Kennedy Dennis Kuo, MD Arkansas Family-to-Family Health Information Center

$100 - $199Christopher Kus Ed Langhenry Christine Lockwood, through United Way of Central NM Martha-Jean & Robert Madison Mary Marin Family Center/CSHCSLisa Martin LEND Fellow/Shriver Center, Univ. Mass. Med. SchoolLaura McAlpine McAlpine Consulting for Growth, LLCSitara Nayak Parent to Parent of GeorgiaNew Hampshire Family Voices, SAO Parent to Parent of Georgia, SAO Parent to Parent of New York State, SAO Parents Helping Parents of Wyoming Parents Reaching Out, SAO Leolinda Parlin PAVE SAO James Perrin, MD Gina Pola-Money Helen Post Utah Parent CenterJames Potter Harper Randall UDOH/CSHCNLinda Randolph John Reiss University of FloridaSherry Richardson Parent to Parent of GeorgiaWendy Ringer PACER CenterRylin Rodgers Riley Child Development CenterCarla Salldin U. of WA - Seattle Pediatric Pulmonary Center/ Seattle Children's HospitalLisa Sanderson SD Parent ConnectionEd Schor Ellen Schwalenstocker 13

CONTRIBUTORS

$100 - $199Julie Serstad Missoual City-County Health DepartmentSue Sherry Community CatalystGerry Singsen Terri (Cookie) Smith University of Southern MS/ Family-to-Family Health Information CenterSouth Dakota Parent Connection, SAO Gerald Stadmueller Suzanne Stevens Stone Soup Group, SAO Scott Suzuki, Esq., MPH Rachell Swanson-Holm Child Health Specialty ClinicFan Tait, MD Jennifer Thomas Brad Thompson Sarah Thorson Minnesota Department of HealthLinda Tung Stephen Viehweg Riley Child Development CenterRuth Walden Wendy Ward Exceptional Children's Assistance CenterDawn Wardyga Grace Williams Rudy Williams Betsy Williamson Michael Wilson Jan Winslow Parents Reaching Out to Help, Inc.Erica Zito Family-to-Family Health Information Center Iowa

$50 - $99 Carolyn AndersonSara Bachman, PhDJay BalzerBayou Land Families Helping Families. SAOBilly BeechlerPatricia BogeBarbara & Bob BoyerJames Bryant, MDWilliam & Jean CaseyKathleen CatafordSusan ColburnDelaware Family Voices, Inc., SAODiana DenbobaJames DooleyDenise DoughertyCarol EastesNadeem & Adeela EllahiFamily Connection of South Carolina, SAOFamily Voices Indiana, SAOHerbert FellguthJanice FialkaHarry GewanterAmy GibsonDebbie GilmerGroundSpringJohn & Karen HaenDolores HannaLibby HoyJames & Elizabeth HuebenerKay JohnsonRoberta & Phil KrehbielRichard Kreipe, MDSundar KuppuswannyPaul Kurtain, MDJack LevineAngela LindigAdelita MartinezJudith & Robert MinahanSuzanne MintzAviva Must

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CONTRIBUTORS

$50 - $99Nan NaranjoNew VistasDwayne NygaardNaomi OrtizSusan PannyMandy PinoRaising Special Kids, SAOMichael & Jessica RaymakerSusan & Fred RedmonJohn ReissMarilyn RuizBrian SebringShaening & AssociatesLaQuanta SmalleyMarilyn StoutWilliam & Rebecca TallmanTexas Parent-to-Parent, SAOJosie ThomasBetsy TrombinoBrian TuffnellBridget ViaCindy WhiteElizabeth WilliamsonJohn WirchChristine & Joseph Woleske

< $50 William Schwab & Leslie GrantLauren AgoratusMary AielloScott & Tiffany AveryHelen BadoyannisFloy BarrettCarolyn BatesDonald & Gayle BoldtSam Bowman-FuhrmannSam BryantWendy ByrnesDoris ChaseyHolly Lu Conant Rees

< $50Mary & Robert CookMary Jo CrivelloAugusta DavisF.J. & M.W. DegaJanet Des GeorgesJanet & George DeVitoDoor County's Renard CheeseJuno DuenasBeth DworetzkyKimberly FalkFamily Voices of Minnesota, SAOPearl FeldmanAnne Ferguson-LairdHolly Fiscus ForlenzaJanice FitzgeraldDebra FornoffGap FoundationSondra GilbertMembers GiveElizabeth GoodmanJo Ann GoszMary HerbMarilyn HuttonRichard HymanToya IndritzJudith JamesMichele JudaAndrea KabcenellBrooke Lehmann, Esq., MSWMary LingleElizabeth MajorAnn McCabeBeatriz MitchellMaureen MitchellCarol & Paul MuckermanSandra & Kenneth MullerDavid MurchioWilliam & Carol NelsonNancy OlsonJoseph O'Reilly

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CONTRIBUTORS

< $50 Michael OrkinMary Jo PaladinoParents Available to Help, Inc.Marcia PetersonAnn PhillipsFlorene PoyadueVeronica RosalesLinda RowleyRebecca RoybalSusan SchmitzLeeanne SeaverMary & James SebringThomas SelvidgeRhonda SextonCeci ShaplandKlaus SitteJames SpolarichMark StahlmanEric StahlmanJacquie StockJulie SullivanEdwina TaylorTrish ThomasMelissa VickersNora Wells, MADennis WheelerTinya White-TaylorCamilla WilliamsSusan Wolf-Fordham

IN-KIND CONTRIBUTORSVSA Washington, DC - The Capitol Area Organization on Arts and DisabilityARTiculate Gallery & StudiosNaomi OrtizNational Center for Cultural Competency

Thanks also to our supporters who contributed by making a purchase through Family Voices' Amazon.com affiliate program.

FUNDERSGenetic Alliance, Inc.Lucile Packard Foundation for Children's HealthHRSA/MCHB/DSCSHCN FV National Center for Family/Professional PartnershipHRSA/MCHB Alliance for Information on Maternal and Child Health Program Oregon Health Sciences University, Department of Pediatrics, National MCH Data Resource CenterOregon Health Sciences University, Department of Pediatrics, The Child and Adolescent Health Measurement InitiativeSilicon Valley Independent Living CenterThe Association of Maternal Child Health Programs

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State Affiliate Organizations (SAOs) of Family Voices as of June 30, 2011

One statewide, family-led organization in each state or territory may be designated as the State Affiliate Organization (SAO). In addition, family-led tribal organizations may apply for Tribal SAO status. Each SAO is approved to use "Family Voices" in its name, to speak on behalf of Family Voices in their state/territory, and to use the Family Voices name to help promote their identity.

Bayou Land Families Helping Families (LA)Delware Family Voices, Inc.Exceptional Children's Assistance Center (NC)Families Together Inc. (KS)Family Connection of South Carolina, Inc. Family Network on Disabilities of Florida, Inc.Family TIES of NevadaFamily Voices Indiana Family Voices of MinnesotaFamily Voices of North DakotaFamily Voices of OhioIdaho Parents Unlimited, Inc.Maine Parent FederationMassachusetts Family Voices at Federation for Children with Special NeedsNew Hampshire Family Voices Oklahoma Family Network, Inc.Parent Education & Advocacy Leadership Center (PA)Parent to Parent of GeorgiaParent to Parent of New York StateParents Let's Unite For Kids (MT)Parents Place of MarylandParents Reaching Out (NM)PATH Parent to Parent of ConnecticutPAVE/Family Voices of WashingtonPTI NebraskaRaising Special Kids (AZ)Rhode Island Parent Information NetworkSouth Dakota Parent Connection Statewide Parent Advocacy Network (NJ)Stone Soup Group (AK)Support for Families of Children with Disabilities (CA)Texas Parent-to-ParentThe Arc of Illinois F2FHIECThe Arc WisconsinVermont Family Network

We are also delighted to have individual and organizational members adding their voices to the nation's only coalition of families and providers focused on family-centered care for children and youth with special health care needs/disabilities. Please refer to our website for membership information, www.familyvoices.org.

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BOARD OF DIRECTORS and STAFF LIST(As of October, 2011)

MOLLY P. COLEVice President of the BoardDirector, Connecticut Council on Developmental DisabilitiesConnecticut

WENDY ALEGRA JONESSecretary of the BoardDirector, Children & Youth with Special Health Care Needs Project, National Center for Cultural Competence, Georgetown University Center for Child & Human DevelopmentDistrict of Columbia

MERLE McPHERSON, MD, MPHVirginia

MARCIA O’MALLEYOwner, Mindful Media ServicesNevada

CAROLYN RICHARDSON, Ed.D.Leadership Training Coordinator, Robert Wood Johnson Center for Health Policy, University of New MexicoNew Mexico

SUSAN T. SHERRYDeputy Director, Community CatalystMassachusetts

SCOTT SUZUKI, JD, MPHAttorneyHawaii

THOMAS TONNIGES, MDMedical Director, United HealthcareCommunity and StateNebraska

RENEE M. TURCHI, MD, MPHTreasurer of the BoardAssistant Professor, Drexel University School of Public HealthDirector, PA Medical Home Program (EPIC IC)Director, Center for Children with Special Health Care NeedsSt. Christopher's Hospital for ChildrenPennsylvania

RUTH R. WALDENPresident of the BoardNew York

GRACE PUSHPARANY WILLIAMSMaryland

JOSIE WOLLHawaii

STAFF

Sophie Arao-Nguyen, PhD, Executive DirectorKaren Anzola, MEd, Co-Director, National Center for Family/Professional Partnerships Leslie Carroll, Director, IMPACT Lacey Keene, Financial AdministratorAdelita Martinez, National Office ManagerMelanie Rubin, MEd, Director of Communications & Strategic InitiativesJennifer Thomas, Director, KASA Trish Thomas, National TA/Partnership CoordinatorMelissa Vickers, IMPACT Project CoordinatorNora Wells, MEd, Director of Programs/ Co-Director, National Center for Family/Professional Partnerships

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ADD YOUR VOICE

Add your voice to help 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. Together we can impact the lives of families with children and youth with special health care needs and disabilities!

• Advocate for important issues. Stay tuned into the needs on Family Voices’ Facebook page, “Family Voices, Inc. (National),” and through our Twitter account, “Family Voices Nat’l.” • Donate online, by mail, or by phone. • Donate in-kind items or services. • Purchase Amazon.com products. • Become a member online, by mail, or by phone.

Visit www.familyvoices.org or contact Melanie at [email protected] for more information.