Feature 6

 

Family Leadership in Action  

By Rachel Rodriguez, Aleja-Laura Larson, Missi Barank, Family Voices 

Family Voices is a national nonprofit organization that aims to achieve family-centered care for all children and youth with special health care needs and disabilities. Through our national network of family leaders, 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. Family leadership is the essence of Family Voices. Family Voices was built – and continues to grow – by the determined efforts of a remarkable community of family and youth leaders and friends. Family to family communication of knowledge, resources, and support is fundamental to our work. 

Aleja-Laura Larson
As a parent with a child with special health care needs it has become my passion to become an advocate for our daughter, Gracie and for other children with special health care needs. The beauty of leadership is it can take so many forms and it challenges each and every one of us to use our talents and share them with others! 

Our journey began June of 2005 with the birth of Gracie, our second daughter. Woven within Gracie was an extra chromosome: the diagnosis Down syndrome. Gracie has been blessed with truly extraordinary traits including unconditional love, strength, innocence, the simplicity of childhood, and the ability to smile with her whole body! It is those extras within Gracie’s little body that have fueled my passion of leadership and advocacy which will allow Gracie and other children to have the life and opportunities they are entitled to. With leadership, awareness is born and through awareness our society will become more tolerant of those less able than ourselves. 

I challenge parents to become leaders and take advantage of any leadership opportunities that may come their way. Start small and think BIG! My journey began with becoming active in our local Down syndrome support group which led to family networking, which led to strong physician relations, which led to education via the Internet and establishing a blog for Gracie, which led to becoming the chair of our state ICC Committee. Parent Leadership not only heals the soul, but it creates a network of advocacy, and lifelong friendships. 

The opportunities of leadership are endless and together as one big family alliance we can pave a brighter future for our children. Challenge yourself and challenge the parents around you! It does the heart good! 

Missi Barank
My name is Missi Baranko and I am the proud mom of four daughters. Our oldest daughter, Tashina, was born with a brain disorder called Schizencephaly. At the time of her diagnosis I was a stay at home mom who had little experience with disabilities. Luckily, I was blessed to have her involved with our Early Intervention Program at an early age. Early Intervention helped to teach me that my husband and I know what is best for our daughter. We had to make a lot of tough decisions in those early years which is probably where I learned a lot about the most important type of leadership: leading for my child.  

When Tashina was about three years old, one of the staff members at the Early Intervention Program asked me if I would be interested in being on our Regional Interagency Coordinating Council (RICC). I didn’t really know what it was or what it meant, but in the past I had participated on other committees for other things and had enjoyed it so I agreed to be on this one.  

I went to the first meeting and was intrigued by this group of professionals who were working on improving Early Intervention Services in our region. This was obviously something I was very interested in since Early Intervention had been such an asset for us. I was especially interested in making sure that the public knew about the program so more families could access it.  

Within a year or so I was asked to be the coordinator for the RICC. I was quite nervous about coordinating it because I didn’t feel that I really understood the lingo yet, but I agreed and am still doing it today. I remember thinking, “fake it until you make it,” as I sat at meetings trying to figure things out. Eventually I picked things up and was given more opportunities to increase my leadership skills. I was often asked to co-present with Early Intervention staff about the benefits of Early Intervention. I also had opportunities to go to conferences related to Early Intervention. One of those conferences happened to be the Office of Special Education Programs conference (OSEP). Again, I wasn’t really sure at the time what it meant, but it was in Washington DC so that sounded exciting.  

When I look back I realize going to the OSEP conference was really my largest stepping stone for leadership. I had the opportunity to meet other parents there who were in similar situations and some were also coordinators of their RICC’s. I also found out about a program in our state, called the Experienced Parent Program. This was a program that our region could access. It would allow a parent to be paid to work in the Early Intervention system. This parent would provide other parents emotional support and assist families in finding resources and information. When I got back home I eagerly dug in to find out what we needed to do to get that program in our region. After about seven months we had it up and running and I was lucky enough to be the parent to do the job.  

Working in the Experienced Parent Program in our region has continued to provide me with opportunities both career related and personally. I have been able to attend multiple parent leadership conferences as well as other conferences related to children and youth with special health care needs (CYSHCN). I have met many other parents and families in my state and across the nation who have contributed to my leadership both locally and statewide. I have had the opportunity to present at a handful of conferences on what it is like to raise a child with special health care needs. This has helped to give me the confidence to continuing presenting on a wide array of issues.  

About a year ago I was also asked to be a family consultant for Family Voices of North Dakota. This position allowed me to continue working on bettering the lives for families raising CYSHCN. Recently Family Voices of North Dakota held a Family Leadership Institute. I was able to be part of the planning committee and was a presenter at the Institute. It is amazing to see how the circle is now complete and I am now a leader for those families who are just beginning to learn about parent leadership. I hope to continue my journey on becoming a better parent leader as it is something that gives so much back to those who do it!