It's Time to Apply Workforce Development to Family Leaders
By Donna Yadrich
Kansas Department of Health and Environment Family Delegate
In April 2010, my daughter, Audrey, was planning the transition from middle school to high school. She would only attend high school for less than one day.
Audrey was diagnosed as a toddler with a very rare autoimmune syndrome that caused unpredictable, chronic and acute life-threatening diseases. She had been in the gifted and talented program since kindergarten and managed to earn straight As. However, her ability to physically function had been greatly impaired by medical fragility. We looked but never found support groups or organizations that were applicable to our experience. We had been led to believe that a very limited set of diagnoses qualifying for state or federal program services were considered 'special needs/disability' by providers unfamiliar with the diverse reach of Title V.
Audrey was a bright star whose primary loves were animals, learning, friendships, reading, music, community service and dance. We were able to "hide" her functional disabilities for many years although her physical appearance did show signs of disease. Seventh grade was the most difficult year of her academic career: she nearly died several times during an 89-day hospitalization and was extremely fragile when released.
Audrey expressed her concerns about "missing high school" to her nurse practitioner who then consulted a social worker. The social worker for medically complex children suggested we seek the guidance of Families Together, Inc., the Kansas Family to Family (F2F) organization. The social worker forwarded me a newsletter from the F2F announcing the recruitment of Youth Advisory Council members in Kansas for youth with special needs funded by a D70 award.
Audrey was immediately interested in the position but we didn't know if she qualified. Indeed she did! Audrey's application was accepted, and she officially joined the Youth Advisory Council in Topeka, Kansas, July 2010 at the age of 14.
I became involved with the Family Advisory Council (FAC) along with Audrey. We participated via phone conferences from Audrey's hospital room – where she celebrated her 15th birthday and passed away in January 2011. Briefly, she had been empowered as an advocate for those with disabilities.
It no longer seemed suitable for me to attend FAC meetings following Audrey's death, so I intended to resign. However, something compelled me to attend and I will always be grateful to my FAC peers and leadership for encouraging my continued participation. In 2012, my Title V program supported my AMCHP Family Scholar application. I attended my first AMCHP annual conference in 2013 where I met a University of Minnesota LEND fellow and coproduced a fact sheet on Family Caregivers of CYSHCN. That fall, I was appointed to the Family and Youth Leadership Committee and also as the Kansas Family Delegate (FD). As the FD, I am serving in a greater capacity for the Block Grant preparation and onsite Region VII review as well as developing a family caregiver assessment. Recently I accepted an invitation to serve within the Kansas MCH- American Academy of Pediatrics (AAP) Partnership as a member of the Kansas Maternal and Child Health Council and in Missouri, I serve as a stakeholder for the Missouri Life Course Network. I have been working to strengthen family engagement in MCH workforce development and accepted a three-year term as a Title V Family Representative to the National MCH Workforce Development Center.
I am so excited about MCH 3.0 – a new way of integrating existing resources! My hope is to install windows and bridges within silos between academic institutions/affairs and family-to-family endeavors.
For example, after my first AMCHP conference I learned only 37 percent of CYSCHN family leaders had pre-AMCHP awareness of LEND. That tells me we've got lots of MCH workforce development work to do!