About
Mission
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care.
History
Family Voices of North Dakota 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, Family Voices of North Dakota became a 501(c3). From 2004-2007, Family Voices of North Dakota 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, Family Voices of North Dakota 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
Our Staff
Donene Feist Executive Director
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
Vicki Peterson Region Coordinator
I am a very proud mother of two boys, one 16 and one 6. My youngest, Aaron was diagnosed with autism 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.
Joan Karpenko Region Coordinator
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!!!
Tonya Oss-Brewer Region Coordinator
My name is Tonya Oss-Brewer and I am so excited to be a part of this team. I have a bachelor’s degree in Child Development and Family Science from NDSU. I also have a certificate from Minot State University for completing studies in developmental disabilities.
I started working with people with disabilities when I was 18 and developed a passion for the people I served. I worked at Friendship, Inc. for 10 years as a direct support staff. After I had finished college I worked at Connections of Moorhead, Inc. as a Director for the Vocational Program for 11 years. I really enjoyed my career there, but made the difficult decision to resign when I had my son two years ago when we found out he was born with Down Syndrome.
I am married to my husband, Jeff and we have 3 children. Ella (4), Jamison, (2) and our new arrival. My hobbies include the great outdoors, going to the lake, riding motorcycle, scrapbooking and spending time with my family and friends.
I am eager to get to know all of you and hope to meet you soon.
Jennifer Restemayer Region Coordinator
Heather Wheeler Region Coordinator
Heather is the mother to 3 daughters; Krystal 16, Miranda 9 and Marguerite 7. Heather and her husband of 11 years moved from northern Michigan to North Dakota in 2010. Their daughter Miranda has multiple health issues including mitochondrial disease, autism, seizure disorder, legally blind status, moderate/severe cognitive impairment, hypotonia (upper extremities) and advanced bone age with precocious puberty. Because of Miranda and the work Heather used to do, nurse for Traumatic Brain Injuries (TBI), Heather was inspired to advocate for children about 6 years ago with the organization CAUSE (Citizens Alliance to Uphold Special Education); Heather also served on the PAC (Parent Advisory Committee) board in her county.
Heather has served on a number of projects over the years including Hilton Special Quest for Early Head Start (2004-2006) with Northeastern Michigan Community Service Agency, AAP and QUINN Bright Futures project as Lead for her office, URLEND in 2011-2012 (Utah Regional Leadership in Neurodevelopmental Disabilities Program).
Currently Heather is employed with Dr. Lois Freisleben-Cook at Comprehensive Pediatric Care. Heather carries many hats for Dr. Cook including Parent Consultant and Advocate, Medical Home implementation lead, Grant writer (detective) and as Dr. Cook would say “The Boss”. Heather is also the President of the McVay Elementary PTO.
Sara Carlson Region Coordinator
Rita Starks Region Coordinator
Our Board
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