Hands & Voices Asks:  What Does it Mean to be Parent-Driven?

By Janet DesGeorges,
Executive Director, Hands & Voices and parent of a deaf child.
H&V Communicator - Summer 2012.

Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology.  We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access, social and educational outcomes for their children.  Our outreach activities, trainings, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential. -The Hands & Voices Mission Statement

When looking at the mission statement of Hands & Voices (H&V), much emphasis has been spent on exploring what it means when we say that we are unbiased, and deservedly so.  It is a cornerstone principle of the organization. The need to train about, define, articulate and live out our philosophy of unbiased support to families has garnered much thought, time and attention.

Janet DesGeorges, Executive Director, demonstrates
yet another meaning of parent-driven.

And yet there is another aspect of Hands & Voices that is not discussed as often, yet is another foundational key to success in the H&V world. This is the attribute of being a parent-driven organization.  What does this mean?

Parent involvement can be categorized into three separate functions:

• Parent led, centered, involved, directed…for their own child
• Parent-to-Parent… for each other
• Parent participation through advocacy…in the system

A parent who is driving the decisions for their own child’s communication, language, and educational needs is considered an empowered parent.  A parent who understands the value and need to support and be supported by other parents as well as being involved in systemic change is considered a parent leader. But what does it look like when an entire organization believes, lives, breathes and functions as a parent-driven entity?  It looks like Hands & Voices.

This article is a compilation of thoughts from within our leadership at Hands & Voices of what it means to be a parent-driven entity in both philosophy and practical application.  The thoughts and values of this belief system are embraced by both the parents and professionals within the ranks of leadership. The reflection of being parent-driven isembodied at every level:  for our own children, for one another, and in the systems we seek to influence and improve.

• “Parents and professionals share a lot of common ground in terms of their passion and purpose, but I'm always a little surprised at how differently that looks in its practical application.  The professional agenda is, by necessity, driven by certain administrative considerations, whereas parents often find those same details completely irrelevant. For example, ‘why are we spending so much time trying to fill out the IEP form correctly?!’ Eventually, both parties learn to appreciate each others 'hierarchy of need' and that synergy enhances the efforts of both parties. As a parent-driven organization, H&V has always managed to maintain its parent-driven identity, and that means our issues are reality-based, current, and deeply personal; how we delve into them is intentionally and inherently informal and casual--a phone call, a text message, a parking lot conversation. But we've learned how to convert that kitchen-table dialogue into fluent professionalese." -Leeanne Seaver, parent/ co-founder/H&V headquarters(HQ) Board member
• “I cannot excel in my job without parents.  Parents are the primary consumers of the programs, services and products that state EHDI programs, audiologists, medical homes and the other providers offer. We have often invited parents to the table in the past to provide their perspective.  However, I want to differentiate between the parents of the past and the Hands & Voices parents of today. Before Hands & Voices, the families who would come to our meetings or were invited to provide feedback, were often identified and included because they were vocal about their personal discontent and quite honestly they were often invited after a product was already developed to give us the stamp of approval. Their feedback was minimal, they rarely dove into a project and would remain on the fringes. The Hands & Voices Parents of today come to us with their ideas of the product. The leadership skills they bring to the table allow them to step into projects more deeply with knowledge, passion and wider perspective. When one Hands & Voices parent is at the table, the perspective that they bring from hearing the stories of other families, the knowledge they bring from learning skills through the H&V trainings and the power they bring from knowing they have dedicated leaders from HQ staff and members of this board who stand firmly behind them, creates a situation where we are the drivers and change agents and we are simply the vehicle by which funds get allocated and the work gets moved along. I believe that this is the way it should be and I am honored to be a part of this parent driven professionally collaborative team you have created worldwide.”  -Elizabeth Seeliger,  professional,/ HQ board member/ Wisconsin H&V
• “When I explain to professionals why the parent perspective is so critical, I try to say it's not that we're saying potentially anything different from them.  It's that we are living proof of WHY something is so very important. We can explain WHY early intervention made a huge difference in how my child acquired language...WHY adult role models offered my child a sense of belonging, acceptance and pride...We all know WHY we should do something but to see and hear the impact of those decisions, that's what we offer the system.  And we're just really fun people...but that's a given.” -Candace Lindow Davies, parent,/ HQ board member/Minnesota H&V
• “To me, a parent-driven organization believes to its core in the power of a single parent or a group of parents to change the outcomes for their own child or an entire population of children.  It is an organization that encourages a parent to thrive when given the opportunity and allows that same parent the space and support he/she needs when circumstances require them to be engaged in other places for other people.” Susan Francke, parent/Kentucky H&V
• “What comes to mind for me is the difference between having a "token parent" to give input and approval, so professionals can claim they've had parent input, versus a truly parent-driven organization.” Teresa Kazemir, parent/ HQ Board member/British Columbia H&V
• “I think as parents, our focus is on what our children need, and we will do whatever it takes to get them what they need... we are not  blinkered by outside concerns such as cost-effectiveness - although obviously we want to spend our money carefully - but things like that are secondary to what's best for the kids. We're more concerned with the human cost than the financial cost. I think most of us, since our kids were identified as deaf or hard of hearing, have spent oodles of time doing things that were not easy, or fun, or cheap, because it's what our kids needed. Driving for hours each way to get to appointments. Moving across the country to get better access to services. Taking our kids to other countries and spending thousands out of pocket for surgery that was unavailable locally…When I was 11 years old or so, a classmate's little brother was in a terrible accident. They were redoing their roof, and 300 pounds of slate fell on this little boy. His mum - a tiny woman, barely five feet tall - picked up that 300 pound load in an instant without thinking twice, put him in the car, and drove straight to the hospital. We all know stories like that, stories of unbelievable superpowers that parents suddenly find we have, if we think our kids are in danger. Only a parent has that kind of strength and determination, and insistence on doing what's right for our children, whatever it takes!” -Jennifer Beer, parent/Ontario H&V
• “Two years ago I attended my son's first high school open house. In the commons area of the school, teachers stood with materials on tables representing the various departments. As I walked up to the World Language table, I saw three giant books; German, French and Spanish. My heart sank. Knowing that my son would need American Sign Language to complete his two year World Language requirement in order to graduate, I asked the teacher standing there, "How do you get ASL on this table?" After I explained what ASL was to this teacher, he gruffly replied "It's about limited resources," and explained the school district had a class like that in another high school across town. For the last two years I have written letters to everyone in our school district, spoken to PTA moms, attended meetings where my husband, son and I requested this each and every time. Even during a chance meeting outside a local grocery store, where I was introduced by my daughter to our new superintendent, I may even have said something like: "Nice to meet you! I've heard so much about you and I really like how you are making changes in our school district, and by the way my son will need to take American Sign Language at his neighborhood school in order to meet his graduation requirements.” (Breath.) He replied with a rather blank look on his face, "Nice to meet you, too."
• Surprisingly, two weeks ago my son came home announcing he was registered for ASL as a World Language class for the 2012/13 school year. When I asked his teachers if this was true, they said yes and were nervous about finding a teacher. I assured them I was a "send" button away from spreading the news out to our state and what did I have to do next. They sent me the wording and out it went. Still dazed from this actually happening, my husband and I looked at one another one day trying to figure out who made this all possible. Was it the one guy who came to the last IEP meeting? Was it getting mad at the school counselor? Then we got it; it was us as parents who made this happen. It was us who educated our son on the importance of why to advocate for what he wanted, and it was us who persisted on behalf of our son. This is parent- driven, an allegiance to families whose children have unique and individual needs. It's not about resources, or any other barrier; it's about doing what's right for our children. In my experience as as someone who guides parents and as a mom myself, I understand and see that shift from when a parent finds out their child has a hearing loss, or whatever else, into making sense of it and everything around their new world. In this process parents feel a strong purpose when advocating for their child, and/or feel the need to fix or change a system. Knowing the differences of these two legs makes a difference in how we work with families and future leaders, and is a great tool in finding balance in our daily lives while working to change systems. Hands & Voices can foster this ability in parents for their children’s benefit.” -Christine Griffin, parent/ Washington H&V
• “Parents (our customers) are the invested caretakers & advocates of our "core customers"--children who are deaf or hard of hearing. Parent-driven helps insure to other parents that there is a level of trust, affinity, & alignment concerning the level of commitment, importance and shape that a professional service, resource or initiative will take. What do we want being parent- driven? First, at a summary level - what parents want is to raise their children to be happy & successful. At a more basic level - what we want is the help, resources, support and information to achieve that. How to achieve that? The how to achieve "buy-in" from parents - it needs to be done at the beginning (not at the end of a process) - getting the initial involvement & investment at the start. Finally, an important attribute of parent-driven is family focus. Service providers bring professionalism to the table; Parents bring "Personalism." It is similar to the difference between sympathy (imagining how it feels) and empathy (knowing how it feels). -Tony Ronco, parent/HQ Board member/California H&V
• Although parent-driven is in our mission statement, child-centered should be our mantra. As parents, we truly listen to our children and their desires for communication. Our kids help lead the way and if we pay attention, we end up where they are meant to be. Along the journey, we take in all of the valuable information necessary for parental guidance and then we present it to our children. We evaluate how they react or respond and then make adjustments accordingly. In the case of any organization affecting children with a "different ability," decisions must be parent-driven in order to be truly child-centered. -Sherri Mansfield, parent/Missouri H&V
• “…Simply put, we are in the trenches 24/7 and live the life we advocate for on an organizational level. We live that life, we are not distant from it…we never stop being parents to a d/hh child and we grow as they grow and their needs grow. We are constantly aware, constantly in touch and we never forget where we have come from and that guides where we are going. We are not in this for pay but for passion of the ones we love so deeply. Yes, we wear the hat of H&V leader, but we always wear the hat of parent. So we use our entire lives to help us choose wisely and to govern fairly and we look for ways to continue to improve communication between people – we are simply taking down the barriers of fear, mistrust, and lack of knowledge and empowering parents. So while chapter leaders are saving the day, we are always in touch with what it means to be simply a parent of a d/hh child and the journey of balancing those needs and even more the creativity of how those two needs flow one into another and instead of in tension, encouraging harmony.”- Laryssa Payne, Parent/Nebraska H&V
• “I have been the ‘token parent’ in a number of different organizations, so I have firsthand experience where my perspective was not only a minority opinion, but not particularly valued in the group's work, naturally designed for the convenience, ease, and economic needs of a professionally run organization over the needs and experiences of parents served by such a program. What a difference it is to have parents at the decision making tables where policies, support activities, and resources are actually created. Parent input in real time makes the vital difference between "what do we think they want within what we can realistically provide" and what parents say right now about the services and supports available. It's messy, but it's a beautiful thing.” – Sara Kennedy, parent/Colorado H&V/HQ staff
• “Today was my ‘AHA Moment’ for what a parent-driven organization means. Today after just learning that my daughter has lost more hearing, and waiting for additional paperwork I looked at my phone and realized I had a full list of other parents that I could call or text for emotional support.  When I went thru this several years ago I knew one other parent to call. Today, I am extremely grateful for the amazing network of parents I can reach at a moment’s notice… and those same parents are there to support me wherever Katie's journey takes us.” - Kelly DiBenedetto, parent/Indiana H&V
• “Belonging to H&V is like settling into my favorite, overstuffed, comfy chair. It's familiar, it's comfortable and it fits me. I'm restored by spending time there. With other H&V members, I don't have to preface my remarks with "as a parent of a child who is deaf." We are all unique parents with unique children but we all carry that same label. I don't have to explain myself. I don't have to put anyone at ease that has that concerned look upon learning that my children are deaf. I don't have to explain why they are deaf and the rest of the family is hearing. It just is. And I can be identified by some other attribute besides "mom of deaf child."
• In our parent-driven organization, we know why we are here: our children. We aren't doing this work for the money or the fame (ha!). This child in the forefront attitude permeates our work. It's present in our board meetings, conference calls, workshops, conferences, email exchanges, and our newspaper. That piece inside of each of us, that piece which holds our child dear, is the piece that keeps us compassionate in our business work, keeps us listening to each other, keeps us faithful to our goal of supporting families without bias. In a parent-driven organization, family comes first. I do what I have to do for my children and family. Whatever that takes. In order for us to serve other families, our own family has to be secure. We “put on our oxygen masks first before assisting others.” Being part of a parent-driven organization helps me put a face on case numbers and statistics when I partner with professionals. I help the team remember there is a mother tending a baby, a father taking off work to drive to an appointment, or an older sister giving up her playtime to go with her parents to a toddler group. Real people are affected in real ways by policies that are implemented and decisions that are made.”  Jeanne Hollabaugh, parent/Arizona H&V

When I think of our organization that has been built on the stories and experiences of parents, I think of this quote from the book Good to Great:

“When all these pieces come together, not only does your work move toward greatness, but so does your life.  For, in the end, it is impossible to have a meaningful life without meaningful work.  Perhaps, then, you might gain that rare tranquility that comes from knowing that you’ve had a hand in creating something of intrinsic excellence that makes a contribution.  Indeed, you might even gain that deepest of all satisfactions:  knowing that your short time here on this earth has been well spent, and that it mattered.”  - Jim Collins, from Good to Great

What is parent-driven? It’s being in charge of the business of running a non-profit organization from the parent perspective. Decisions, programming, and funding priorities are DRIVEN by what families believe are the most important aspects of fulfilling the mission of our organization.  It’s not just what we believe about our own children, it is the day-to-day operations that are also embedded with a parent-driven attitude at H&V. All of our staff are parents of children who are deaf/hard of hearing. Our bookkeeper is a parent of deaf children. Does that make a difference when it comes to computing numbers? Maybe not, but the fact is that at every single level of this organization, parent- driven does not need to be defended or justified, it just ‘is’. At the end of the day, we know what families need.  We ARE families, and that is why the success of this organization has blossomed into a world-wide phenomenon that shows no signs of slowing down.