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“From our heart to yours: some of the families we serve.�


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 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.


Dear Friends, Family Voices’ Fiscal Year June, 2011 - June, 2012 was a critical period of solidifying Family Voices’ fundamental goals, values, and systems, while transitioning to the next phase in the organization’s growth. The Strategic Plan for the years 2012 – 2015 was completed, with much input and support from the Board and Executive Director Sophie Arao-Nguyen. Work plans in each of the five areas of strategic direction were approved and put into action, including: infrastructure, policy, diversity, access to care, and funding. Administrative systems within the organization were further refined and documented, including procedures for policy coordination, financial tracking, publications coordination, and management of Family Voices’ individual and State Affiliate Organization membership programs. Family Voices also hired Melanie Rubin as Director of Communications and Strategic Initiatives, a staff role which replaced a previous administrative position. The reorganization was in keeping with the organization’s stated goals of creating greater visibility for Family Voices, and diversifying funding sources. Immediately Family Voices inaugurated the State Affiliate Organization resource portal on the Family Voices web site. Soon after we launched a social media presence for Family Voices to gather and share family stories, and mentor the network of Family to Family Health Information Centers and Family Voices State Affiliate Organizations in the use of social media strategies. We also initiated widespread, monthly distribution of press releases on topics of importance for Family Voices’ stakeholders. Once these efforts were completed or underway, Dr. Arao-Nguyen announced her intention to transition out of the role as Executive Director, and the Board began a thorough and comprehensive search to fill this position which continued through the summer of 2012. As well, Karen Anzola, Co-Director of the National Center for Family Professional Partnerships, notified the Board she planned to leave this position, and the organization underwent a hiring and transition process to welcome Bev Baker in this role.

Throughout the year, Family Voices continued to deliver and enhance services in all three existing programs, the National Center for Family Professional Partnerships, Project IMPACT, and Kids as Self Advocates (KASA). You will read about the achievements of each of these programs in this annual report. Lynn Pedraza arrived at Family Voices as the new Executive Director in late August of 2012, after this fiscal year had ended. She says: “My orientation has included learning about the work that preceded me at this great organization, both in the past fiscal year, and in the 20 years prior – stewarded by founders Polly Arango, Julie Beckett, and Josie Woll, and many other powerful leaders who have been guardians of Family Voices and this critical movement for families and children. I would like to extend my gratitude to each and every one of them, and I am honored to take a place in this tradition of service. In the current fiscal year we are continuing a strong focus on visibility for the organization, and diversifying our funding support. We are also working to further solidify the organization’s infrastructure, enhance efficiency in all of our systems, increase transparency for internal and external stakeholders, and manage our work flow for greatest effectiveness, productivity, and joy.” We look forward to sharing our successes with you as this new phase unfolds.

Molly Cole President, Board of Directors

Lynn Pedraza, PhD Executive Director 2


Reports for 25 states; and produced an Activities Booklet which highlights one activity from each state that illustrates a promising practice. A Journal Article entitled Families are Key in Improving Quality was published in Academic Pediatrics and a brief was written titled Family Professional Partnerships within Programs and Agencies: Family Perspectives on Lessons Learned. News stories and press releases were disseminated on a wide variety of topics including successes of the family leadership network, World Health Day, and honoring Katie Beckett at the time of her passing.

Family Voices’ National Center for Family/Professional Partnerships (NCFPP) is a cooperative agreement with the Maternal and Child Health Bureau. In its seventh year during FY 2011-2012, 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: F2F HIC’s Reporting Impact of NCFPP by Program Area Health Literacy


Navigating community-based services


Health care policy/Financing


Cultural/Linguistic Competence


Family/Professional Partnerships


Family-Centered Care


Health and Wellness of CYSHCN


Medical Home Youth Leadership/Transition Family Leadership Development Screening

93% 90% 90% 88%

1) Continue providing 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 March 2011 through February 2012, the NCFPP: responded to 1,632 requests for technical assistance; reached 2,678 families, family leaders, and professionals through 56 presentations/conferences/ meetings; held a highly successful F2F Grantees Meeting in Washington DC for 135 family leaders; and facilitated 36 conference calls/webinars for family leaders and partners reaching 662 participants. 2) Inform families, family leaders, and professionals with resources and materials to enhance the understanding and practice of partnerships. In addition to 9 editions of Friday’s Child newsletter and weekly Washington Updates, the NCFPP: updated the F2F Brochure; created a new, user-friendly version of the Annual F2F HIC Data Reports; customized State Data

3) Collaborate with the National Centers and other key partners, including: • Working with the American Academy of Pediatrics to create a monograph on how family-centered care is being implemented in pediatric practices, and participating in The AAP Council on Children with Disabilities and the AAP Medical Home Implementation National Center Advisory Committee; • Teaming with the National Center for Ease of Use to host webinars on best practices in serving non-English speaking families ; • Coordinating with the National Center for Hearing Assessment and Management (NCHAM), the Genetic Alliance, and Regional Genetics Collaboratives to collect information on policies and activities around screening and treatment; • Facilitating an advisory group for The Child and Adolescent Health Measurement Initiative (CAHMI) on expanded uses of the National Survey data; and • Providing opportunities for family leader participation in Agency for Healthcare Research and Quality (AHRQ) Centers of Excellence on Child Health Quality Measures. 4) Document evidence of family/professional partnerships. The Family Voices Family–Centered Care Assessment, a questionnaire that will measure implementation of family-centered care, has been finalized and validated for reliability. First the NCFPP coordinated multiple focus groups with diverse families in New Jersey, New Mexico, and California. Based on this input, the questions were revised and tested through an on-line pilot questionnaire with input from eight hundred and ninety families. The questionnaire was revised again to incorporate this feedback and the final measurement tool will be 3 available soon.

MEETING NEEDS FAMILY-TO-FAMILY BY PROVIDING SUPPORT TO INDIVIDUAL FAMILIES AND FAMILY ORGANIZATIONS These quotes from family leaders and organizations offer insight into the support Family Voices and the NCFPP provided this year in specific areas. Peer support: “I continue to use the (F2F) listserv …. whenever we are seeking information/resources. Happy to report that we always get quick responses with great information! Contacting all of the F2F/SAOs in this manner is a fantastic plus for our work. We often forward queries from project partners, and our (family leader) colleagues always deliver.” (Family leader in the states replying to the NCFPP Annual Feedback survey, and explaining how and why they have used the F2F list serv)

information on health coverage) with a grandmother who called to ask about access to health insurance for her grandson. The young man is 19 years old and no longer eligible for SCHIP. Health coverage through his family was not an option as his father is deceased and his mother’s job doesn’t offer health coverage. This young man…..needed medication to control seizures, anxiety, and other mental health symptoms. His grandmother had been purchasing the needed medication, but this was creating a hardship for her as she is on a fixed income….Our F2F HIC directed her to a provision of the ACA and in a couple of months this young man will be able to access coverage for his medications and other health concerns. (Family organization replying to the NCFPP Annual Feedback Survey) BY THE NUMBERS: As the Technical Assistance provider to Family-to-Family Health Information Centers, the Family Voices NCFPP aggregates data from all of the centers. From June 1, 2011 – May 31, 2012, the F2Fs accomplished the following: OUTREACH: Provided health care information/ education/training to over 980,000 families and over 375,000 professionals.

. . . BY HELPING FAMILIES TO BECOME LEADERS Shared resources: “Resources shared by the NCFPP about the National Center on Medical Home Implementation helped improve our outreach at Federally Qualified Health Centers and clinic sites. This led to an increase in referrals and improved services (as reported in our Client Impact Surveys). We share resources on family-centered Medical Home with health professionals and families to advance their knowledge and this facilitates health improvements. “ (Family organization replying to the NCFPP Annual Feedback Survey ) Impact on a family, based on information received from the NCFPP: “Was able to share (up to date

MOST FREQUENT TOPICS OF INFORMATION: Public health care financing programs such as Medicaid and SCHIP; family support such as matching families with trained support parents; family/provider communication such as what to ask providers and how to share information; cultural and linguistic barriers. PARTHERSHIPS: On average, each F2F HIC partnered with 16 state-based organizations and 11 communitybased organizations IMPACT: 94% of families served report being better able to partner in decision-making; 93% of families report being better able to navigate services; 91% of families report being more confident about getting health care services their children need.


FAMILY VOICES’ PROJECT HIGHLIGHTS Project IMPACT Health 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 – over the life span. This work is accomplished in collaboration with Family-to-Family Health Information Centers (F2Fs), the Maternal and Child Health Bureau, the American Academy of Pediatrics, and other national health and chronic disease prevention partners. “Creating Bright and Healthy Futures for Families” them on theBright Futures for Families Website. It also published the new edition of the Bright Futures for Families Pocket Guide, which is an easy-to-use and complete health reference for families in supporting their children’s health from before birth to adulthood. Project IMPACT contributed to many committees, such as the Bright Futures Steering Committee, and disseminated maternal and child health information to a range of audiences nationally. KIDS AS SELF ADVOCATES

“Paving the Way for Disabled Youth and their Adult Allies” This year IMPACT worked closely with the F2Fs in North Carolina and Utah to gather and share information from English and Spanish-speaking families and family leaders about the barriers they face in promoting the health of their children, how they are overcoming those barriers, and the actions they are taking to support health for all children. The project also continued to focus 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. IMPACT also provided mentorship for families as participated in Maternal and Child Health Block Grant Review. The project produced several Bright Futures for Families newsletters and fact sheets and posted

Kids as Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. One of KASA’s activities is to develop publications and resource materials for youth, and for organizations and individuals that support youth. Over the past year, KASA released five new tip sheets on topics such as health care issues and working with adult allies. In celebration of Disability Employment Awareness Month, KASA youth hosted and co-presented, in collaboration with a professional from the Pacific ADA Center, a teleconference/webinar titled the ADA (Americans with Disabilities Act) and You. During this program, KASA youth gave an overview of the ADA and shared how it impacts many aspects of the lives of young people with disabilities. KASA is also in the process of creating a state chapter network. This year, KASA completed its Chapter Development Manual, interviewed and accepted four states to host local chapters, and distributed the KASA Chapter Development Manual to each of them. 5

2011 – 2012 Public Policy Highlights Family Voices’ public policy activities this year focused, first and foremost, on securing legislation to extend funding for Family-to-Family Health Information Centers (F2Fs). Family Voices also worked to maintain funding for Medicaid and the Title V Maternal and Child Health Block Grant, among other programs. Additionally, the organization was active in the regulatory arena, gathering feedback on proposed regulations for the Affordable Care Act (ACA). And, in February 2012, Family Voices joined former Surgeon-General David Satcher and a number of other organizations in submitting an amicus brief to the Supreme Court, arguing that the ACA’s Medicaid expansion should be upheld. With respect to F2F funding, Family Voices’ immediate goal was accomplished. In February 2012, Senator Robert Menendez (D-NJ) and Representative Frank Pallone (D-NJ) introduced bills to extend the program’s funding for another three years. Ultimately, the American Taxpayer Relief Act of 2012 included a provision to extend F2F funding for one additional year, through Federal Fiscal Year 2013. Although there was no funding

about the important role F2Fs play for children with special health care needs and their families. This collaborative process will continue during the coming year as Family Voices seeks another funding extension.

Becky Shipp receives an award

Family Voices also helped to prepare comments for the administration about a number of proposed rules related to the implementation of the ACA, always sharing the perspective of children with special health care needs. Some Highlights of Family Voices’ Work to Support Diverse Populations Family Voices was invited to and attended an in-service training presented by the Administration for Native Americans for HHS/MCHB, ACF, and CMS staffers. The focus was on outreach to Native American, Alaskan Native, and Native Hawaiian populations, with guidance and suggestions on how to improve access so that these populations can receive the same types of services as their peers. The training, which took place in Washington, DC, was attended by Diana Denboba and other MCHB division heads and program directors, and presented a brief history of governmental involvement with these populations.

Waiting outside the Supreme Court for the ACA decision

increase – funding will remain at $5 million for the fiscal year – this was nonetheless a victory given the current trend of cutting federal spending. The success was achieved through close collaboration between the Family Voices policy team and the organization’s national network of family leaders, who educated their congressional delegations

Family Voices also worked with the Washington state F2FHIC coordinator, Janice Fitzgerald, on how to connect with and support the Native American populations in that state. Janice received a list of tribal contacts, and virtual introductions were facilitated with the Head Start Special Needs Coordinators for three tribal Head Start Programs, four Tribal Community Health Representative programs, and an Indian Health Care facility.



$1,079,794 $ 35,524 $ 25,737 $1,141,055



ASSETS 2012 Current Assets Cash and cash equivalents Grants and contracts receivable Other current assets Total current assets


52,975 449,987 9,428 512,390

281,133 234,125 7,096 522,354

15,829 15,829 (12,347) 3,482

42,509 22,964 65,473 (53,012) 12,461





38,762 45,704 84,466

27,887 62,773 24,935 115,595

412,619 18,787 431,406

410,200 9,020 419,220



Equipment and Improvements Office equipment Leasehold improvements Accumulated depreciation Net equipment Total assets

2011 (Restated)

LIABILITIES AND NET ASSETS Current Liabilities Accounts payable Accrued liabilities Deferred Revenue Total current liabilities Commitment and Contingencies Net assets Unrestricted Temporarily restricted, KASA

Total liabilities and net assets


Full audit report available upon request


Keeping Families at the center of Children’s Healthcare

FAMILY VOICES STATEMENTS OF ACTIVITIES AND CHANGES IN NET ASSETS Years Ended June 30, 2012 and 2011 UNRESTRICTED Public Support Grants and contracts Fundraising Contributions Interest and other income Net assets released from restrictions

2012 $



1,104,484 2,500 30,186 2,271 4,033

961,773 6,565 59,397 4,966 8,307



1,079,794 35,524 25,737

1,000,288 37,130 26,500

Total expenses



Change in unrestricted net assets


Total revenues Expenses Community awareness Management and general Fundraising


TEMPORARILIY RESTRICTED Contributions Release of restrictions Change in temporarily restricted net assets

13,800 (4,033) 9,767

4,694 (8,307) (3,613)

Change in total net assets



Net assets at beginning of year



Prior period adjustment (Note8)





Net assets at end of year


See Notes to Financial Statements.


CONTRIBUTORS $5,000 - $9,999 The Rajaratnam Family Foundation Inc. $1,000 - $4,999 Care Source Tom & Jane Tonniges, MD, FAAP Oregon Health Sciences University, Department of Pediatrics $500 - $999 John Arango Nicholas Arango Association of Maternal & Child Health Programs, AMCHP Children’s Hospital Association Children’s Hospital of Michigan Honeywell International Corporation Margaret Mary Richards, PhD Susan Sherry Community Catalyst Josie Woll $200 - $499 Sophie Arao-Nguyen Christina Bethell Yoshiko Dart EASi Therapy and Diagnostic Services, Inc. Eileen Elias Dan Ford Wendy Jones, MSW Lucille Packard Foundation Martha-Jean & Robert Madison Ann Marchetti Marcia O’Malley Carolyn Richardson Dr. Richard & Linda Roberts William & Rebecca Tallman United Way Designation

$100 - $199 Becky Adelmann John & Kelly Bunnell Charitable Flex Fund Gail Chasey Barbara Crabb The Family Café, Inc. Thomas Gloss Lynda Honberg Ed Langhenry Ben & Donna Olsen Linda Papageorge, PhD Scott Suzuki, Esq., MPH Fan Tait, MD Jean Trainor $50 - $99 Susan Badeau Billy Beechler James Bryant,MD Leslie Carroll Mary Castro Summers Carolyn Gleason Maureen Greer Bernard and Jane Guyer George Jesien Dennis Kuo, MD Arkansas Family-to-Family Health Information Center Paul Kurtin Claire Lenker Jack Levine Katherine O’Reily PFCC Partners, Inc. Wendy Ringer Rachel Rodriguez Mikiko Stebbing Stephan Viehweg Nora Wells, MA Rudolph Williams Elizabeth Williamson


< $50 Don Abramson Lauren Agoratus Richard Antonelli Bev Baker Jay Balzer Stacey Bashara Maureen Casey Susan Colburn Margaret Curran Sharman Davis Barrett Barbara Deloain Janet & George DeVito John Foley Debra Fornoff Richard Hyman Lynn James Pierre Kaluzny Lacey & Jason Keene Nicole Klock

< $50 Richard Kreipe, MD Paul Kurtain, MD David Lawrence Linda Mackie Adelita Martinez Terry Ohlson-Martin Tabitha Osborne Jorge Pineda Mandy Pino John Reiss Melanie Rubin, MEd Ellen Schwalenstocker Diana Sheeks Marie Sherrett TRUIST Michele Tuohey Melissa Vickers Helen Waldron Heather Wheeler


State Affiliate Organizations (SAOs) of Family Voices as of June 30, 2012 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 Nevada Family Voices Colorado Family Voices Indiana Family Voices of Alabama Family Voices of Minnesota Family Voices of North Dakota Family Voices of Ohio Family Voices of Wisconsin Idaho Parents Unlimited, Inc. Maine Parent Federation Massachusetts Family Voices at the Federation for Children with Special Needs New Hampshire Family Voices Oklahoma Family Network, Inc. Parent Education & Advocacy Leadership Center (PA) Parent to Parent of New York State Parents Let's Unite For Kids (MT) Parents Place of Maryland Parents Reaching Out (NM) PATH Parent to Parent of Connecticut PAVE/Family Voices of Washington PTI Nebraska Raising Special Kids (AZ) Rhode Island Parent Information Network South Dakota Parent Connection Statewide Parent Advocacy Network (NJ) Stone Soup Group (AK) Support for Families of Children with Disabilities (CA) Texas Parent-to-Parent The Arc of Illinois F2FHIEC Vermont 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,


BOARD OF DIRECTORS and STAFF LIST (As of March, 2013) MOLLY P. COLE President of the Board Director, Connecticut Council on Developmental Disabilities Connecticut MARCIA Oâ&#x20AC;&#x2122;MALLEY Vice President of the Board Owner, Mindful Media Services Nevada RENEE M. TURCHI, MD, MPH Secretary of the Board 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 Pennsylvania RUTH R. WALDEN President Ex Officio New York Note: Treasurer position is currently in the process of being filled. JULIE BECKETT Iowa JENNIFER BOLDEN PITRE, Esq Senior Program Manager, CYSHCN Association of Maternal & Child Health Programs New Jersey

CAROLYN RICHARDSON, Ed.D. Leadership Training Coordinator, Robert Wood Johnson Center for Health Policy, University of New Mexico New Mexico ANDREA ROUNDFIELD, MS, MA, LSCI, & TCI IEP & Related Services Coordinator Special Educator for severe multiple disabilities NY DOE District 75 New Jersey THOMAS TONNIGES, MD Nebraska GRACE PUSHPARANY WILLIAMS Maryland JOSIE WOLL Hawaii STAFF Lynn Pedraza, PhD, Executive Director Bev Baker, Co-Director, National Center for Family/Professional Partnerships Martyne Brooks, Administrative Assistant Leslie Carroll, MUP, Director, IMPACT Lacey Keene, Director of Finance & Administration Natasha Tapia, Financial Administrative Assistant Jennifer Thomas, Director, KASA Trish Thomas, Director of Diversity & Outreach Melissa Vickers, MEd, IMPACT Project Coordinator Helen Waldron, Project Assistant, NCFPP Nora Wells, MEd, Co-Director, National Center for Family/Professional Partnerships


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 products through Family Voices’ link. • Become a member online, by mail, or by phone. Visit or call us at 1.888.835.5669 for more information

Annual report  
Annual report