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    Archived pages: 356 . Archive date: 2012-11.

  • Title: Family Voices
    Descriptive info: .. Our History.. Our Mission.. Staff.. Emerging Youth Leaders.. Job Opportunities.. Board of Directors.. Partners.. Caring for Your Child.. Data and Research.. Diversity and Cultural Competence.. Family Leadership.. Family-Centered Care.. Health Care Financing.. Oral Health.. Title V.. Workplace and Families – Employment and Benefits.. Family Voices Basic Information.. Kids as Self Advocates (KASA) Resources.. Tools and Reports.. Latest News.. Press Releases.. FV IMPACT.. The National Center for Family/Professional Partnerships for CYSHCN (NCFPP).. National Data Resource Center (DRC).. National Kids As Self Advocates (KASA).. Past Projects.. F2F HIC Grantee Meeting.. National Conferences.. Gala.. Partner Events.. Donate.. Advocate.. Share Your Story.. Join Us.. Keep Informed.. See our NEW Strategic Plan.. 2012-2015.. October 12 Washington Update.. GET THE WORD OUT ON FACEBOOK!.. National Center for Family Professional Partnerships:.. helping families partner in decision making.. November 02.. Families Helping Families - Superstorm Sandy Relief Fund.. There are over 660 thousand children with special health care needs in New York and almost 300 thousand children with special health care needs in New Jersey.. What challenges are these families facing under the dangerous conditions presented by Superstorm Sandy? What can we, safe in our own homes far from the disaster, do to help?.. October 15.. Fall Costume Contest Announced with Prizes.. Family Voices  ...   Nominiations.. The Family Voices Board Nominations Committee is seeking applicants for the 2013- 2016 Board of Directors.. This is a volunteer position.. Priority is being given to Family Leaders and people with a financial and accounting background.. October 5 Washington Update.. This week's update includes information about how the presidential race might affect Medicaid, how states are progressing in developing their Essential Health Benefits packages, and how to take advantage of the congressional recess by talking to your Members of Congress about Family-to-Family Health Information Centers.. RSS.. More News ».. Need Help and Information?.. Click on your state!.. Select a State.. Alabama.. Alaska.. Arizona.. Arkansas.. California.. Colorado.. Connecticut.. Delaware.. District of Columbia.. Florida.. Georgia.. Hawaii.. Idaho.. Illinois.. Indiana.. Iowa.. Kansas.. Kentucky.. Louisiana.. Maine.. Maryland.. Massachusetts.. Michigan.. Minnesota.. Mississippi.. Missouri.. Montana.. Nebraska.. Nevada.. New Hampshire.. New Jersey.. New Mexico.. New York.. North Carolina.. North Dakota.. Ohio.. Oklahoma.. Oregon.. Pennsylvania.. Puerto Rico.. Rhode Island.. South Carolina.. South Dakota.. Tennessee.. Texas.. Utah.. Vermont.. Virginia.. Virgin Islands.. Washington.. West Virginia.. Wisconsin.. Wyoming.. Expand Map.. DCS Login.. Board Portal.. F2F Portal.. SAO Portal.. Copyright 2011 Family Voices.. Terms & Conditions.. Contact Us.. 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110.. Phone:.. 505-872-4774.. Toll Free:.. 888-835-5669.. Fax:.. 505-872-4780.. Site by.. Trilogy..

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  • Title: Site Map / Family Voices
    Descriptive info: PRINT.. EMAIL.. http://webster.. articulatedman.. com/link_mailers/53/link_mailings/new?link=http%3A%2F%2Fwww.. familyvoices.. org%2Fsitemap%2Findex_html title=Site+Map+%2F++Family+Voices.. SHARE.. FONT:.. About Us.. Our Work.. Resources & Publications.. News.. Projects.. Events.. Take Action..

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  • Title: About Us / Family Voices
    Descriptive info: org%2Fabout%2Findex_html title=About+Us+%2F++Family+Voices.. The Family Voices history is best told by describing our achievements.. Those achievements rest on the accomplishments of those who preceded us.. It is their history that makes our history possible.. Before There Was Family Voices.. Today, most families who have children with special health care needs find it hard to imagine what it was like when babies with disabilities were never expected to live beyond infancy, or if they did, they were quickly shunted off to the nearest institution, perhaps never to be seen again.. Parents were counseled by their doctors to institutionalize their children for the sake of your marriage or for your other children.. Many parents, of course, heeded that advice.. They felt they had no choice, because they had no help at home, no therapies or other services in their communities, no place for their son or daughter with special needs to learn, play, and thrive.. Other parents questioned their physicians words and brought their child into their family to love and be loved, no matter the consequences.. It s almost impossible to pinpoint when things for children and youth with disabilities began to change.. Was it when the Children s Bureau was established in 1935 and crippled children (its term) were acknowledged as present and deserving of care and attention? Was it decades later, in the 1960s, when the Civil Rights Movement caused people to think about discrimination of any kind? Or later in the 1960s when Medicaid was created? Was it the events leading up to the passage of the federal special education law, P.. L.. 94-142 (now called IDEA) in 1975? In any case, by the end of the 1970s, families and many of their professional partners agreed that children, disabled and nondisabled, with chronic health conditions and without, belonged with their families, in their communities, and with their friends.. They belonged at home.. During the past 30 or so years, life has changed irrevocably for children and youth with special health care needs.. Family Voices traces its roots back to those first courageous families who disagreed with the physician who counseled an institution for their son; or who insisted on staying with their hospitalized daughter; or who convinced the neighborhood school to enroll their child.. The Family Voices History.. We Bring Our Children Home.. The creation of Medicaid Home- and Community-Based Waivers helped end the practice of institutionalizing children who were disabled or chronically ill.. With the flourish of his pen, President Ronald Reagan approved legislation in 1981 that created a new way of caring for children and adults with disabilities.. (Medicaid is the state-federal program that finances health care for eligible populations, including the disabled, poor and elderly.. ) Medicaid waivers were conceived by Julie Beckett, an Iowa mother who is now Director of National Policy at Family Voices, her congressman, and federal Medicaid officials.. Waivers are the financial mechanisms that help support health and related services, allowing children and adults to live at home, rather than in large, expensive, anonymous institutions.. Once the first state Medicaid agency applied for and received a waiver from the federal government, other states began to apply.. As a result, thousands of children who in the past might have lived in hospitals or state institutions now live at home.. Medicaid waivers have not solved all the problems families face in finding health care financing and services for our children.. Waivers can be complicated and are often bureaucratic nightmares.. But Medicaid waivers set a precedent that cannot be denied: children and adults with disabilities and special health care needs can be cared for safely at home and in their communities at lower costs and with greater satisfaction than in institutions.. The Family Voices community includes some of the nation s most sought-after experts on federal and state Medicaid waiver programs.. We train families and professional partners in the intricacies of applying for waivers, assist individual families with waiver problems, keep advocates updated on the latest waiver policies, and work toward additional and streamlined Medicaid waivers.. We Help Other Families.. One of the founding purposes of Family Voices was to assist veteran parents to help other families raising their children with special health care needs.. Experienced families listen and answer new families questions about a new diagnosis, help them find an accommodating dentist, or assist in negotiations with insurance companies.. We help other families address language and racial barriers, enroll a child in the neighborhood school, improve hospital policies, explain complicated Medicaid rules, and advocate for better preschools.. Family Voices has become a national clearinghouse of information and support.. We began with faxes and monthly mailings to state leaders from the New Mexico office staffed only by volunteers for several years.. With improvements in electronic communications, Family Voices now posts electronic messages to our stakeholders throughout the work day, hosts a comprehensive website that includes many of our written materials, and leads topical conference calls to our leaders and partners.. We also publish guidance materials and information on a variety of topics.. However, Family Voices excellent materials and electronic communications only underpin that most important connection of all face-to-face interaction between families.. The following story is about a Family Voices leader, Laura Royal of Georgia, who recently passed away.. Her friend and mentor, Cindy Arceneaux, shared this memory with the Family Voices community after Laura s death.. It says it all.. Laura and Jenny (another Family Voices leader) and I once drove to the middle of nowhere, or what we fondly called Podunk, to help parents of an infant understand insurance, Medicaid, Early Intervention, etc.. We found a family living in a trailer, surrounded by woods, with the nearest emergency treatment too many miles away.. Their infant was turning blue when we peeped in at him.. No one had taught the parents to suction the child.. As parents of children who were medically fragile, Laura and Jenny dealt with these medical issues routinely and were able to advise the parents.. The dad kept insisting that they pay us in venison.. We kept insisting that their payment was offering information to other families.. Laura said it was a matter of pride that the dad pay, and she thanked him for the venison.. Laura worked with that family for quite sometime and we advocated with and for them with state agencies.. Laura's life definitely had a positive impact on others.. Can we ask for any more than that?.. We Improve Hospital Policies.. Many of Family Voices leaders got their start as advocates when their children were hospitalized.. Remember the prominently displayed signs in hospitals about Visiting Hours ? Thirty years ago, when a child was hospitalized, her parents could visit her only during a few restricted hours each day.. In the 1970s, parents approached hospital administrators about allowing family members to stay with their hospitalized children for longer periods of time.. They were successful.. Restrictions on visiting slowly diminished.. Parents could come any time.. Older siblings could quietly play with a hospitalized brother or sister.. When nothing outrageous occurred from open visiting hours, we asked to stay overnight with our children, to be present as they underwent anesthesia and when they were in the recovery room.. Families are now acknowledged as part of the healing team.. We serve on hospital advisory boards, staff inpatient and out-patient clinics, provide parent support in intensive care units, and help train pediatric students and residents.. We know that quality improves and satisfaction for everyone soars when families and family-centered care permeate an institution.. Among Family Voices most important partners are children s hospitals and the health professionals who work in them.. Family Voices teams up with National Association of Children s Hospitals and Related Institutions (NACHRI), to improve federal, state and local policies that impact hospitalized children and their families.. We Believe Every Child Has the Right to Go to School.. In almost every school in this country, there are children with disabilities and chronic conditions learning alongside their friends.. Unfortunately, the federal special education law, IDEA, was  ...   serve on advisory boards, we are there to assure that policies and programs are family-centered.. Family Voices has become a primary source of expert consultation about family-centered care for health providers, policymakers, funders, advocates, and the media.. We Improve State Policies.. Because the Family Voices network is state-based, its leaders keep abreast of policy and regulatory developments that might impact a state s children and youth with special health care needs and their families.. Recognized as expert stakeholders by government and private leaders, we are key players in improving state policies.. We work with state agencies, place families on state and local government advisory commissions, and as citizens, we participate in the legislative process.. A recent email from a Family Voices state leader, Donene Feist, describes a typical effort.. It s about working to pass the Family Opportunity Act, a Medicaid program that will help hundreds of families in North Dakota.. Last week, on Thursday evening, we were told our bill was going to get killed.. I rallied the families and the bill passed the Senate on Friday.. Over the weekend, many families contacted their Senators to encourage their House colleagues to vote for it especially those on the Appropriations Committee.. It passed House Appropriations on Monday.. Then it went to the House Floor.. Families did not rest.. They e-mailed, called, and spoke in person with their House members.. The bill passed the House.. It was kind of surreal.. This really was a bipartisan effort.. We will have a press conference with the Governor when he signs it.. For me, this was about Arianna Kaseman.. She is one of the kids who would have benefited from the Family Opportunity Act.. At the beginning of March, she died.. Her funeral was on the day of one of the hearings, so we honored her that day.. Her mom and dad and little brother (who also has the same diagnosis) will be my guests of honor when the Governor signs the legislation.. It is for them.. and those to come.. Of course, this is for all the many other families and their children the little Allisons, Aarons, Elizabeths, Laikins and the many other children in this state who might benefit from this bill.. Some of the families will attend the 2007 Family Voices conference with me.. I have to emphasize what an eye-opener this was for me grassroots efforts really work!.. P.. S.. I haven't celebrated yet.. But tomorrow my husband and I are going to see Eric Clapton.. On Saturday, our daughter will be at her first prom.. And on Monday, our son turned 21.. So it has been quite a week indeed.. We Improve Federal Policies.. Family Voices leaders helped develop the State Children s Health Insurance program (S-CHIP).. During the S-CHIP campaign, we tried to ensure that it would adequately cover children and youth with special health care needs, often arguing our case at the highest and most public levels in Washington, DC.. We also worked with disability and education coalitions during reauthorization of IDEA, the special education law.. We fought to assure that the least harm was done when the Children s Social Security program came under fire from Congress.. We know that millions of middle-class families have private health insurance that does not cover critical services for children and youth with special health care needs.. So Family Voices recommended a change in the federal Medicaid law to allow families to purchase Medicaid.. Because most families also lack adequate information when they must make decisions on behalf of their children, we also recommended the creation of state-based Family-to-Family Health Information Centers.. Congress wrapped these (and related initiatives) into a package called the Family Opportunity Act (FOA).. For five long years, Family Voices and Congressional leaders worked for its passage.. The FOA finally passed in 2005.. Family Voices also assists with the improvement of federal policy in several other ways.. As one of the few truly national grassroots networks in the country, we are frequently asked by other nonprofit organizations, as well as White House and Congressional leaders and reporters, to locate families, children, and youth who will testify at congressional hearings or be available for national press conferences.. The community-based nature of Family Voices also enables us to bring local and state issues to the attention of policymakers in Washington.. We have made a difference!.. We Encourage Youth to Speak Out.. When Family Voices was comparatively new, some of our sons and daughters began to ask how they might become their own advocates.. An articulate letter to the Board of Directors from Janelle Wells, then a Florida teenager with special health care needs, convinced Family Voices leaders to consider creating a new (and young) activist arm.. Kids as Self-Advocates (KASA) has its own national Advisory Board composed of young men and women from a diversity of racial and ethnic backgrounds who live throughout the country and have disabilities that range from cerebral palsy to deafness, phocomelia, scoliosis, learning disabilities, and beyond.. The KASA Advisory Board directs and decides KASA activities and priorities.. KASA s website.. , speaks directly to youth, providing provocative, courageous, and humorous personal stories by KASA writers.. The website gives access to youth-generated resources not often available in the average hometown: guidance on staying safe, civil rights and advocacy, dating and relationships, transportation all at a youth s fingertips, no matter where they live.. KASA depends on grants to fund its work, from its website to its training conferences.. KASA youth have participated in national advocacy events and marches.. KASA is a unique training ground for youth who want to make a difference, and KASA is creating its own history.. We Partner with Government Agencies.. In describing an opportunity to help a federal agency implement the principles of family-centered care, a physician friend of Family Voices once suggested that we infect the agency with our presence and ideas.. Over the last 15 years, Family Voices has definitely infected many local, state, and federal agencies by building partnerships with them.. The most effective example of this partnership is that between MCHB and Family Voices: we have served on MCHB s proposal review committees for years; our leaders review state MCHB block grants; and Family Voices and MCHB have co-sponsored national and international events.. MCHB has recognized that a family organization such as Family Voices is an effective messenger, carrying its policies of partnership and family-centered care to multiple local, state, and federal stakeholders.. The same is true of MCHB counterparts in the states, where Title V programs hire family leaders for outreach and training and invite families to serve on their parent advisory councils.. In addition, some Title V agencies house the state Family Voices office.. We Train Leaders.. Where would Family Voices be today if there were not always a new crop of family leaders from many different racial and cultural communities ready to learn, advocate, and change the world? It s not easy to keep up with young mothers and fathers who first advocated for their own child within health and other systems and then looked around and realized that other families also needed help.. We have discovered that new leaders especially need training, materials, and moral support.. From its inception, Family Voices has dedicated most of its personnel and funding resources to leadership training: face-to-face; train-the trainers; printed materials and handbooks; technical assistance via conference calls and the Internet; conferences; gentle guidance; inspiration; applause.. Unlike most other groups, this unique community of families also requires child-care stipends, travel money, and respite care.. The search for adequate financial and human resources to respond to this thirst for helping others will always be a challenge for Family Voices.. And yet, Family Voices will continue to respond to the thirst, until the day when all members of all families have health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent, all families are included as decision makers at all levels of health care, and partnerships between families and professionals are the norm..

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  • Title: Our History / About Us / Family Voices
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  • Title: Our Mission / About Us / Family Voices
    Descriptive info: org%2Fabout%2Findex_html%3Fid%3D0003 title=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 needs receives family-centered care.. OUR CHILDREN and YOUTH.. It is estimated that 10.. 2 million children in the United States have special health care needs.. Like other children and youth, those with special health care needs deserve a happy, healthy childhood and youth attending school, enjoying community events, living with their families, and worshiping with friends and neighbors as well as the opportunity to become productive adults.. However, unlike other children and youth, ours also have challenging health conditions physical, mental, or emotional that can make their lives and their families lives more complicated.. Any child or youth at any time could develop a disability or chronic health condition.. OUR PRINCIPLES.. Family-centered care.. Because families are at the center of a child's life, they must be equal partners in decision-making and all aspects of the child's care.. Family-centered care  ...   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 STRATEGIC DIRECTIONS.. Over the next four years (2008-2011), Family Voices will focus on the following strategic directions in our work to achieve family-centered care for all children and youth with special health care needs and/or disabilities.. Direction #1: Infrastructure.. Family Voices will have a dynamic and effective structure based on a strong network of family-led organizations.. Direction #2: Policy.. Family Voices advocacy positions will be disseminated widely, and all state organizations will meet a minimum level of competency in advocacy/policy.. Direction #3: Diversity/Cultural Competence.. - Family Voices leadership will both reflect and serve to a high level of satisfaction our diverse constituency.. Direction #4: Funding.. - Family Voices will be financially healthy and stable..

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  • Title: Staff / About Us / Family Voices
    Descriptive info: org%2Fabout%2Findex_html%3Fid%3D0005 title=Staff.. FAMILY VOICES NATIONAL OFFICE.. 3701 San Mateo Blvd.. NE, Suite 103.. Albuquerque, NM 87110.. Phone: (505) 872-4774 ~ Toll-Free: (888) 835-5669 ~ Fax: (505) 872-4780.. ADMINISTRATION STAFF.. Lynn Pedraza.. , Ph.. D.. ~ Executive Director.. Phone: (505) 872-4775 ~ Fax: (505) 872-4780 ~ Toll-Free: (888) 835-5669.. E-mail:.. lpedraza@familyvoices.. org.. Lacey Keene.. ~ Director of Finance Administration.. Phone: (505) 872-4774 ~ Fax: (505) 872-4780 ~ Toll-Free: (888) 835-5669.. lkeene@familyvoices.. Melanie Rubin.. ~ Director of Communications Strategic Initiatives.. Phone: (505) 872-4777 ~ Fax: (505) 872-4780 ~ Toll-Free: (888) 835-5669.. mrubin@familyvoices.. Martyne Brooks ~ Administrative Assistant.. Phone: (505) 872-4774 x106 ~ Fax: (505) 872-4780 ~ Toll-Free: (888) 835-5669.. mbrooks@familyvoices.. PROGRAM STAFF AND CONSULTANTS.. Administrative Consultants.. Rachel Rodriguez.. E-mail:.. rrodriguez@familyvoices.. Karen Anzola.. Email:.. kanzola@familyvoices.. NCFPP - National Center for Fa mily/Professional Partnerships.. Bev Baker ~ Co-Director,.. National Center for Family/Professional Partnerships.. Phone: (505) 872-4774~ Fax: (505) 872-4780.. bbaker@familyvoices.. Trish Thomas.. ~ National TA/Partnership Coordinator.. tthomas@familyvoices.. Helen Waldron.. ~ Program Assistant.. Phone: (781) 674-7224 ~ Fax: (781) 674-2851.. hwaldron@familyvoices.. Nora Wells, MEd ~ Director of Programs/ Co-Director,.. Phone: (781) 674-7207 ~ Fax: (781)  ...   jthomas@fvkasa.. Infrastructure Consultants.. Consultants provide support to Family Voices in some specific areas:.. National Field Co-Coordinators.. Diana Autin ~ Regions I II*.. dautin@familyvoices.. Mary Jo Paladino ~ Regions III IV**.. mpaladino@familyvoices.. Regional Field Coordinators.. Region I: The Federation for Children with Special Needs.. Barbara Popper.. Rich Robison.. rrobison@fcsn.. *Region I/New England/Mid-Atlantic.. : Connecticut, Delaware, District of Columbia, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Puerto Rico, Rhode Island, Vermont, Virgin Islands, Virginia, and West Virginia.. Region II Consultant.. Sherry Richardson.. srichardson@familyvoices.. *Region II/South East.. : Alabama , Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, New Mexico, North Carolina, Oklahoma, South Carolina, Tennessee, and Texas.. Region III Consultant.. Carolyn Allshouse.. callshouse.. @familyvoices.. **Region III/Midwest.. : Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, Ohio, and Wisconsin.. Region IV Consultants.. Donene Feist.. dfeist@familyvoices.. Gina Pola-Money.. gpolamoney@familyvoices.. **Region IV/West:.. Alaska, Arizona, California, Colorado, Guam, Hawaii, Idaho, Montana, Nevada, North Dakota, Oregon, South Dakota, Utah, Washington, and Wyoming.. Family Centered-Care.. Suzanne Bronheim.. bronheis@georgetown.. Clarissa Hoover.. choover@familyvoices.. Stephen Zyzanski.. sjz@case.. POLICY.. Public Policy Co-Directors.. Janis Guerney, Esq.. jguerney@familyvoices.. Brooke Lehmann, MSW, Esq.. blehmann@familyvoices..

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  • Title: Emerging Youth Leaders / About Us / Family Voices
    Descriptive info: org%2Fabout%2Findex_html%3Fid%3D0006 title=Emerging+Youth+Leaders.. Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth.. We are teens and young adults with disabilities speaking out.. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.. KASA Task Force at the Disability Pride Parade in 2007.. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues.. We also help health care professionals, policymakers and other adults  ...   help each other succeed.. KASA Board and staff 2009 (not pictured Lyndsi Holmes and Emily Bill).. KASA believes young people with disabilities will have control over their own lives and futures.. We help this happen by teaching youth about their rights, giving peer support and training, and changing the systems that affect our lives to include us.. Welcome to KASA! Joining is free for youth and open to anyone who would like to be part of our network.. So, read up, join in and pass it on!.. Read more about KASA!..

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  • Title: Job Opportunities / About Us / Family Voices
    Descriptive info: org%2Fabout%2Findex_html%3Fid%3D0007 title=Job+Opportunities.. No Current Job Openings..

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  • Title: Board of Directors / About Us / Family Voices
    Descriptive info: org%2Fabout%2Fboard title=Board+of+Directors+%2F+About+Us+%2F++Family+Voices.. Ruth Walden.. President.. Retired,.. Nassau, NY.. Ruth Walden recently retired from her position as a Family Specialist for the New York State Department of Health in the Children with Special Health Care Needs Program.. Among her duties and responsibilities, Ruth referred families and young adults to services, resources and funding opportunities to help their families.. She also conducted trainings and offered facilitation for focus groups of families and youth/young adults with special health care needs.. Additionally, Ruth worked with local counties to acquaint them with transition needs so that they are better prepared to work with youth and young adults within their community.. Since having her son, Ruth has been very interested in helping others make lemonade from the lemons they have in their lives.. Ruth's son is her inspiration that gives her the passion and drive to work in the field as well as to offer her free time to assist families of CSHCN.. Her motto has always been "If I can help just one person, I can achieve my goals.. " To see smiles on the children's faces, lights up Ruth's life.. She can't imagine life without some attachment to CSHCN.. Ruth is the current President of the Family Voices Board of Directors.. Ruth is enthusiastic about contributing her time and talents to Family Voices.. While serving in this capacity the key organizational goals Ruth is focused on include diversifying Family Voices' funding for the future, increasing the list of Family Voices contributors and supporters and assisting Family Voices in becoming a true 21st century organization.. She applauds Family Voices for taking the first steps in this process by completing the reorganization of the Family Voices infrastructure.. Now Ruth affirms- "we must move to the next level!".. Molly Cole.. Vice-President.. Director of Connecticut's Council on Developmental Disabilities, Hartford, CT.. Molly Cole is Director of Connecticut's Council on Developmental Disabilities.. She was previously the Associate Director of the A.. J.. Pappanikou Center for Excellence in Developmental Disabilities at UConn Health Center.. She has over 30 years of experience in the field of developmental disabilities, with a focus on family support and advocacy.. She is a founding member of Family Voices and recently served as a National Field Co-coordinator for the organization.. She holds a number of appointments to councils and boards, including Chair of the State Advisory Council to the CT Department of Children and Families, and co-chair of the Medical Home Advisory Council to the CT Department of Public Health.. Mrs.. Cole has received numerous state and national awards.. She has published articles on family leadership and family support, and written and directed numerous grant funded projects.. She served as a Program Manager for the CT Birth to Three System, is the former Executive Director of FAVOR Inc.. , a statewide family advocacy organization, and she directed the Family Center at CT Children's Medical Center for nine years.. She is the parent of three children and grandparent of two, and she has had personal experience with an array of disability and health services and programs in the state.. Her middle child, Mariyama had significant disabilities complex medical needs, and passed away at the age of 18.. Renee Turchi, MD.. Treasurer.. Assistant Professor, Drexel University,.. Philadelphia, PA.. Renee Turchi is a practicing MD whose research and clinical work focus on children and youth with special health care needs (CYSHCN).. Renee is a member of the faculty at Drexel University School of Public Health and Drexel University College of Medicine.. In addition, she is the Director of the Pennsylvania Medical Home Program (EPIC IC), a statewide quality improvement program for pediatric practices across Pennsylvania funded by the Pennsylvania Department of Health and the Maternal Child Health Bureau (www.. pamedicalhome.. org).. Renee is Medical Director of Special Programs at St.. Christopher's Hospital for Children, where she oversees grants and program development and practices.. Her research and clinical work around care coordination and CYSHCN have been presented and published in multiple national forums.. Renee's passion centers around caring for CYSHCN.. As such, she supports and advocates that all children should have a medical home which includes family centered care.. Research and policies supporting medical home, care coordination and family centered care are at the core of her passions.. Renee is current Treasurer of the Family Voices Board of Directors.. During her tenure on the Board of Directors, Renee wants to contribute to bringing the value of family centered care and Family Voices to the medical provider community.. Her hope is that the medical community supports and assists in promoting F2Fs and Family Voices.. She would like to help get the Finance Audit Committee up and running and assist in fund raising.. In addition, Renee is interested in supporting and disseminating work with the Family Voices tools.. Wendy Jones.. Secretary.. CYSHCN Project National Center for Cultural Competence, Georgetown University,.. Washington, DC.. Wendy Jones is the Director of the Children Youth with Special Health Care Needs Project at the National Center for Cultural Competence (CYSHCN- NCCC) at the Georgetown University Center for Child Human Development in the Pediatrics Department of the Georgetown Medical Center.. In her current work at the Center for Child Human Development she is involved in three major projects: (1) NCCC- providing training, technical assistance and consultation, and resource development to programs serving and supporting families of CYSHCN to translate cultural and linguistic competence theory and policy into practice towards the elimination of health disparities; (2) National Center for Early Childhood Mental Health Consultation- to assist Early Head Start, Head Start and early childhood education programs to provide mental health consultation services to infants, toddlers and their families to promote healthy social, emotional and behavioral health with emphasis on family and community culture and the impact/stigma associated with emotional or behavioral disabilities; (3) DC Symposium- to support family involvement and engagement in the development of a plan to improve services and supports for children and youth with special health care needs and disabilities and their families.. Wendy's passions and interests are centered on providing assistance to families from diverse language, socio-economic, geographic and racial backgrounds to navigate and negotiate the best services and supports for their children and families.. She feels very strongly  ...   All.. In that role, she represented consumer interests in negotiations around the 1986 Massachusetts universal health care law, hospital free care, insurance market reforms, and financially distressed acute care hospitals.. She was involved in implementation of state health reforms.. Susan holds a bachelor's degree from the University of Massachusetts, Amherst and a master's degree from Goddard College.. She has also completed her doctoral coursework at Brandeis University.. During her tenure on the Family Voices Board of Directors, Susan hopes to contribute to strengthening the voice of families in health policy as national health reform is implemented.. Scott C.. Suzuki, JD, MPH.. Attorney Scott C.. Suzuki, Attorney-at-Law,.. Honolulu, HI.. Scott Suzuki is an attorney who practices law in Honolulu in the areas of estate planning, elder law and Special Needs planning.. His practice includes, but is not limited to, assisting families with guardianship / conservatorship issues and the creation and administration of special needs trusts.. Scott believes in hard work but also enjoys sports, music and literature.. And while he is a proponent of preventative health practices, Scott also has a weak spot for good food in all varieties!.. During his tenure on the Board he would like to focus on fostering and encouraging more partnerships and team work between Family Voices and other national organizations.. Thomas F.. Tonniges, MD, FAAP.. Boys Town Pediatrics,.. Boys Town, Omaha, NE.. Thomas Tonniges, MD, FAAP,.. is Director of the Boys Town Institute for Child Health Improvement.. Prior to Boys Town, Tom was the Director of.. International and Inter-Professional Activities at the American Academy of Pediatrics (AAP) where he represented the Academy internationally to promote optimal physical, mental and social health and well-being for all infants, children, adolescents and young adults worldwide.. For ten years Tom was the Director of the Department of Community Pediatrics where he led a variety of private and federal grant programs to improve the health of children nationwide.. He also was a member of the AAP Board of Directors.. A graduate of the University of Nebraska College of Medicine in Omaha, Nebraska, Tom served in private practice for 18 years in Hastings, Nebraska.. Tom has recently brought together a group of child advocates, charitable organizations, and concerned citizens from across the state to work toward ending child poverty in Nebraska.. During his tenure on the Board, Tom will bring his extensive nonprofit, child health, and fundraising background to benefit Family Voices.. Grace Pushparany Williams.. Family Leader and Advocate,.. Bowie, MD.. Grace Pushparany Williams most recently worked for the Association of the Maternal Child Health Programs (AMCHP) as the Program Manager for Children and Youth with Special Health Care Needs (CYSHCN), for the Parents Place of Maryland as a Health Care Coordinator as well as for the Maryland Coalition of Families for Children's Mental Health as a Cultural Competency Outreach Coordinator.. Grace is also involved in the Maryland Developmental Disabilities Council where she serves on the Children and Family Issues Committee and works with the Maryland State Interagency Coordinating Council (SICC) on issues related to infants and toddlers as well outreach related to cultural and linguistic affairs.. Additionally her work involves partnering with groups and agencies such as the Maryland University Center of Excellence (UCEDD), the Maryland Medicaid Advisory Commission, the Maryland Dental Action Coalition, the Prince George's County Commission on Disabilities and The Arc of Prince George's County.. Grace strongly believes in the Family Voices mission and vision and is grateful and proud of Family Voices for being the only organization representing the broad spectrum of children and youth with special health care needs.. Her areas of interest and passion are family-centered care, cultural competency, family involvement, policy and legislative affairs.. Grace has been part of the Family Voices organization for about 10 years as a network member, Regional Coordinator, Executive Director Search Committee member and Infrastructure Committee member.. She hopes to use this experience and the knowledge she has gained to promote the Family Voices mission and vision, especially in the areas of partnership with other like-minded organizations and federal and state agencies as well as to promote and implement cultural competency and influence policy and legislative affairs.. Josie Woll.. Family Voices of Hawaii,.. Along with Polly Arango and Julie Beckett, Josie founded Family Voices.. Josie Woll is the parent of three children, including.. a.. wonderful daughter Cassilly who has a few developmental disabilities and even more.. significant successes like those in so many other families who are Family Voices members.. Josie served as the Director of the Sultan Easter Seal School an Early Intervention P.. rogram that was recognized for its excellence in providing family centered, culturally appropriate and coordinated services to families and their infants and toddlers with special health care needs or at risk for them.. Josie has also been a contractor with the Federal Children with Special Health Needs Division, Bureau of Maternal and Child Health and is, at times, a contractor with the University of Hawaii s Center for Disability Studies.. Josie has received numerous awards and honors that she shares with the ma.. ny partners she has collaborated with over the years.. Her most treasured recognitions were those that acknowledged her contributions to the betterment of families and their children with special needs in Hawaii.. During this tenure on the Family Voices Board of Directors (Josie has served previous terms in the 90s and early 2000s), Josie would like to preserve the gains that have been achieved by the tireless efforts of so many Family Voices members and build on them to ensure the voices of children and their families are not only heard but result in the system changes which acknowledge that fiscal prudence and quality services can.. coexist.. Josie would also like to support and ensure Family Voices mentors new family leaders who will personify our grassroots organization that speaks for the many in their communities, states and at the national level.. 2011 - 2012 Board Officers.. Ruth Walden President.. Molly Cole Vice-President.. Wendy Jones, ME.. , MSW Secretary.. Renee Turchi, MD, MPH Treasurer.. Board Contact Information.. Family Voices, Inc.. 3701 San Mateo Blvd NE, Suite 103.. Toll-Free: (888) 835-5669.. Fax: (505) 872-4780.. Interested in joining the Board of Directors? Read more and apply.. here..

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  • Title: Partners / About Us / Family Voices
    Descriptive info: org%2Fabout%2Fpartners title=Partners++%2F++About+Us+%2F++Family+Voices.. National Centers.. Other Organizations.. The Catalyst Center.. A national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN).. National Center for Community Based Services.. A leadership and resource center designed to support states and communities in organizing services so families of children and youth with special health care needs (CYSHCN) can use them easily and families are satisfied.. The implementation of community-based service systems is a key component of Healthy People 2010 as stated in its Objective 16.. 23: to increase the states and territories that have service systems for children with special health care needs.. The Institute for Community Inclusion was awarded a cooperative agreement from MCHB in 2010 to operate this national center.. National Center for Cultural Competence.. The NCCC provides national leadership and contributes to the body of knowledge on cultural and linguistic competency within systems and organizations.. Major emphasis is placed on translating evidence into policy and practice for programs and personnel concerned with health and mental health care delivery, administration, education and advocacy.. National Center for Hearing Assessment and Management (NCHAM).. This National Resource Center (NRC) assists state agencies and other federal and non-federal partners in the development and operation of sustainable statewide Early Hearing Detection and Intervention (EHDI) systems.. National Center for Medical Home Initiatives for Children with Special Needs.. The National Center of Medical Home Initiatives for Children with Special Needs provides support to physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.. National Health Care Transitional Center for Youth with Special Health Care Needs.. The project will assure that youth with special health care needs are prepared for their transition from pediatric to adult health care and that they experience a smooth and seamless transfer of care from pediatric primary care and specialty care to adult settings.. NH’s Center for Medical Home Improvement was awarded the cooperative agreement in 2010 to operate this national center.. Agency for Healthcare Research and Quality (AHRQ).. The lead Federal agency charged  ...   several F2F HICs.. The Child and Adolescent Health Measurement Initiative (CAHMI).. The Child and Adolescent Health Measurement Initiative (CAHMI) developed and maintains a number of quality measurement tools and strategies that assess the quality of care provided to children and young adults.. Data Resource Center for Child and Adolescent Health (DRC).. The Data Resource Center for Child and Adolescent Health provides online access to survey data that allows users to compare state, regional, and nationwide results – plus resources and personalized assistance for interpreting and reporting findings.. March of Dimes.. An organization that supports comprehensive newborn screening for all babies in this country, regardless of their place of birth.. We urge every state to screen every baby for at least 29 conditions.. For each of these conditions, screening has a documented benefit to the child, and a reliable test that enables early detection is available.. Maternal and Child Health Bureau (MCHB).. Federal agency responsible to programs and policies for children and youth with special health care needs.. Provides funding for several F2F HICs and several National Centers focused on health care.. National Center on Birth Defects and Developmental Disabilities (NCBDDD).. Federal agency that promotes the health of babies, children, and adults, and enhances the potential for full, productive living.. Their work includes identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.. National Initiative for Children's Healthcare Quality (NICHQ).. An organization dedicated solely to improving the quality of health care provided to children through raising awareness, identifying best practices, and by providing tools and methods to improve care - at the practice, hospital, community, state and national level.. National Newborn Screening and Genetics Resource Center.. An organization that provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.. State Title V CSHCN Departments.. Contact information for State Title V CSHCN Departments responsible for administering health care programs for children and youth with special health care needs..

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  • Title: Our Work / Family Voices
    Descriptive info: org%2Fwork%2Findex_html title=Our+Work+%2F++Family+Voices.. Looking for information on partnering with your child’s provider, names of other advocacy organizations, or links to parenting resources? Find them here!.. Family Voices’ projects involve the collection and reporting on a variety of topics.. Search here for information that can inform and support your efforts.. Essential general resources as well as culturally-specific information are available for your reference and use.. Families provide incredible leadership at the state and federal levels.. Look here to find resources on issues such as strategies for improving health care financing, Families in Program and Policy, and partnering with  ...   family or provider? Find these here!.. Important information on insurance, managed care, Medicaid, and other programs.. Oral health is critical to the overall health of children and youth with special health care needs and disabilities.. Search here for information and advice on ensuring good dental health for such children and youth.. Need to know what Title V is and what it does or how to partner with Title V in your state? Find a breadth of information here on Title V.. Important information for families and employers on workplace benefits and considerations for families with special needs..

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