Family Voices of North Dakota Health Information and Education Center 


Family Voices of North Dakota
PO Box 163
312 2nd Ave. w
Edgeley, ND 58433
ph: 701-493-2634
fax: 701-493-2635
alt: 1-888-522-9654

About Us

History of Family Voices of North Dakota andFamily Voices National

  • Who We Are

    FV of ND has been assisting families of CYSHCN since 1997, when Executive Director Donene Feist, a mother of a young child with hearing impairment, recognized the need for family assistance in navigating health care systems. 

    With grants from Family Voices National, CSHS, then at the ND Department of Human Services and private donations, FVND became established as a resource for families and professionals. 

    In 2000, FV of ND became a 501(c3).  From 2004-2007, FV of ND was awarded $50,000 annually from the Centers for Medicare and Medicaid Service (CMS) to run a Family-to-Family Health Education and Information Center, and continued to receive funding from CSHS. 

    In 2007, FV of ND was awarded $95,700 annually by the Maternal and Child Health Bureau to continue and enhance its operation as a Family-to-Family Health Information Center (F2F HIC) through 2010.  With this additional funding FV of ND hired 3 part-time staff, resulting in outreach to more families

  • Who We Are/FVND Staff

    Donene Feist is the Director of Family Voices of North Dakota. 

     

    Family Voices has four additional Family Consultants across the state

    Missi Baranko Family Consultant in the Dickinson area and the Program Coordinator for the ND Parent to Parent Project.   

        Vicki Peterson, Family Consultant in the Bismarck area

      Joan Karpenko, Family Consultant in the Grand Forks area


    Brenda Schmid, Family Consultant in the Fargo area


     

  • Family Voices National

    Family involvement is a core value and principle of systems of care for children with special health care needs. Family Voices has, over the last decade, transformed that
    vision into concrete action at the service, management, and policy-making levels.  The leadership, wisdom, and warmth of the Family Voices organization has served as a
    beacon for those striving to build meaningful partnerships with families.

    Before 1992-Family leaders work individually on health issues in their states. Surgeon General Koop introduces idea of family-centered care. Federal Division of Services for Children with Special Health Care Needs (DSCSHCN) funds family-centered care projects that bring family leaders together. Little information about children with special health care
    needs

    Fall 1992- Clinton/Bush Presidential Campaign focus: national health care reform. Throughout the fall, Polly Arango, Julie Beckett, and Josie Woll explore possibility of national family-run organization about children with special health are needs, plan gathering of family leaders in DC.

    December 6, 1992-close to 20 family leaders meet in Washington, DC. Agree to: Establish national grassroots network of families and friends speaking on behalf of children with special health care needs; base it in the states; let everyone volunteer; delay incorporation; have office in New Mexico. CALL IT FAMILY VOICES! All accomplished in less than one day.

     1995-FV incorporates as nonprofit with national Board of Directors. Volunteer dad sets up books, database, writes grants. Part-time staff handles phone calls, information flow. One-pagers: Title V, managed care, Medicaid, SSI.
    Successful second FV conference was held in DC. Families serve on national task forces, including first
    definition of children with special health care needs. Arango volunteers as Executive Director. 5,000 members

    2004- By 2004, Family to Family Health Information Centers are funded in 25 states, helping families to make
    informed decisions and to assure family-centered, community-based, culturally competent care for their
    children.

    2008- Family Voices is represented in every state, as well as Washington D.C., Puerto Rico, and the Virgin Islands.
    Family to Family Health Information Centers funded in 40 states. This network of families and friends is
    over 50,000 and growing.

Staff Information

FVND staff bring a rich diversity of information and assistance to the table for others.

Donene Feist is the mother of 3 children.  I began my quest in assisting families early on when our oldest and middle child were initially diagnosed about a month apart.  Also, as a member of the Family Involvement Subcommittee of the Interagency Coordinating Council (ICC).  I became involved as I was looking for answers in raising my own children with special health care needs. "We were lost, didn't know where to begin to find services or even where to begin."  Through the ICC effort, I was a founding member of North Dakota Family to Family, now called ND Parent to Parent. "I became involved with Family Voices natioanlly about the same time and later started our own chapter."  Donene is a nurse and as such knew it was vital to collaborate at all levels for our children.  However, with that said...didn't know all of the resources that were needed.  "Health and education are essential pieces of the needs of families."  It is essential to have the "Family Voice" at all tables to ensure positive outcomes for our children. Donene has been very active both at the state and national level on areas of health, medical home, transition, family centered care, cost effective and community based services, and family satisfaction. Donene is the recipient of the Robert Wood Johnson Community Health Leader Award 2008 

Missi Baranko-My journey began 11 years ago when our first of four daughters, Tashina was born.  By the time she was about 7 months old we noticed she was not doing things that other babies do. We were continuously told she was fine and not to worry.  She entered Early Intervention when she was 10 months old for delays in all areas of development.  Two of Tashina's sisters also participated in Early Intervention for delays.   The experiences I have had with Early Intervention have had a huge impact on who I am today.  I currently also work as an Experienced Parent in our regional Early Intervention Program.

 When Tashina was 2 years old she got the diagnosis of Schizencephaly, a very rare brain disorder.  Tashina has continued to defy the odds and predictions the medical professionals gave her.   We have strived to have her live a fully included life even when it might not have made sense.

Today Tashina is becoming quite the self advocate and even got to sit at Senator Dorgan's desk in Washington DC! She said that was her favorite thing about the whole trip!  As I write this she is advocating for her own bedroom! 

 As a family we have had many of the same struggles and tough choices that most families have when raising a child with special health care needs, but Tashina has taught us so much about compassion, strength, and family dynamics in crisis!   It is much of this experience and learning that has made me want to work with and help families raising children with special health care needs and to make sure that there is always a parent at the table when decisions are being made whether they are local, state, or federal.

Vicki Peterson-I am a very proud mother of two boys, one 16 and one 6. My youngest, Aaron was diagnosed with auitsm at the early age of 15 months. Aaron went from being verbal to nonverbal. He lost all his language skills in one week. With the extraordinary help of trusted friends and family, early intervention and a very helpful resource center; Family Voices, we began our journey into the world of special health care needs and disabilities. Now at age 6, Aaron has transitioned form Early Childhood Special Education and into kindergarten this last fall. He is no longer non-verbal and is an emerging child of language and communication. Being mentored by my trusted friends, I learned about all the systems involved in the process of raising a child with special needs. I became involved in local areas of advocacy, RICC, and support groups. Feeling the need to give back to the community that helped my family so much, I became involved in Family Voices of North Dakota as a Family Consultant. I am now involved in active advocacy at the local, state and national level. I have a great passion for families to be connected to the resources they need and the educational tools they need to support their children with special health care needs. My sons have taught me a great deal and Aaron has inspired me beyond belief.

Brenda Schmid-I am the proud mother of beautiful little girl named Hannah.  Hannah is 11 years old and to date is undiagnosed.  Hannah has a history of undefined suspected neurometabolic disorder with complications of psychomotor retardation, dystonia and intractable epilepsy.  Hannah birth was normal and within 48 hours went into status epilepsy and the rest is history.  Not having a diagnosis has proven to be one of the biggest obstacles not only in Hannah’s medical management, but also in receiving services (medically necessary therapy), getting medical approval for continued diagnostic testing and not knowing what the future holds.  In the past 11 years I have been involved in tasks forces, advisory committees, attended Mentor Parent training, attended parent support groups of children with special needs.  I currently serve as President for HOPE Inc. (fitness, fun, socialization for children who use wheelchairs for their mobility).  Our family recently built a handicap accessible house for Hannah (that was a learning process).  As a family we enjoy going to the lake, swimming, pontooning, participating in HOPE Inc. activities, spending time with family and friends, going to movies, and long walks with our dog Howie.  In my free time I enjoy shopping, reading, golfing and entertaining.  Someone asked me a long time ago, “what is it that drains you”  I replied, “taking care of Hannah”, then they asked me, “what fills me up”, I said, “Hannah”.  Hannah is my life always has been.  From the second that I laid my eyes on Hannah I was in love.  It is my love for Hannah that drives me.  Over the past 11 years we have met some amazing children and their families.  It is my pleasure to dedicate my time and energy to help children and families like ours.  Hannah has completely empowered me to go after what she needs and deserves.  Through our journey we have experienced mountains, valleys and meadows and no matter where we are at in our journey we learn and grow and continue to move forward.  Yes, we landed in Holland, and we wish that Hannah was free of all pain, suffering and medical difficulties, but we wouldn’t choose any other destination, because nothing can compare once you have been to Holland. 

Joan Karpenko "In 1993 my world was turned upside down and would never be the same again.  But it has been an amazing experience and I have no regrets as it has made me a better person.   From a routine ultrasound 5 months into my pregnancy, I was told my daughter, Ali, would have Spina Bifida.  She probably would never walk and would have many physical and mental challenges.  I was scheduled to terminate the pregnancy but could not go through with it. (For 22 years I was a professional cake decorator.  We closed our family bakery in 2004.)   For many years since Ali's birth, my dream was to be involved with families who would face the same situation.  It's just a connection you feel from having a child with a disability.  It is such a good feeling to be able to support other families who are following in our footsteps, to help them find services, equipment and to connect them with other families.  When meeting these families you don't feel like strangers, but as if you have known each other for years.  My daughter Ali and I have been working on having an all accessible playground in Grand Forks.  Phase 1 was built in September and Phase 2 will be built in the Spring.  It has been an amazing project with community support.  We can't wait to see kids with disabilities enjoying it.  A 52 year old friend in a wheelchair has never been on a playground and is excited for this one to open!!! 

 

Contact us today!
We welcome your questions and queries. Please see our Contact Us page for complete contact information.

Copyright Family Voices of North Dakota, Inc. All rights reserved.

Family Voices of North Dakota
PO Box 163
312 2nd Ave. w
Edgeley, ND 58433
ph: 701-493-2634
fax: 701-493-2635
alt: 1-888-522-9654