Learn more about our motivations
The mission of Adler’s Voice is to help other families of a child with complex communication disorders obtain the resources, medical and therapeutic treatments, assistive technology, and educational resources their child needs to acquire expressive communication.
It is assumed that all people can communicate. When was the last time you thought about the mechanics of exclaiming “Hello” to a friend you haven’t seen in a while, or saying “I love you” to someone you care about, or shouting “Stop!” as your child starts to dart into the street? Most of us have never thought about how the words we speak are formed. It just happens. Naturally. As natural as a breath, or a heartbeat, or a blink. But tragically this is not always the case. Many children in our community cannot speak.
These children will have to overcome seemingly insurmountable hurdles to achieve what the rest of us instinctively have. A voice. Without a voice they are powerless. They cannot ask for help when it’s needed, request food when they are hungry, shelter if they are homeless, or safety if they are a victim of abuse. They cannot tell a doctor what they are feeling when they are ill, or expressively convey love, joy, fear, sadness, or pain. A voice is so much more than just communicating basic needs for survival. It is part of our identity. It is what makes us humans, and individuals. It gives us independence and control, provides validation, derives power, and gives us a sense of belonging among our friends and communities.
Unfortunately, speech and language disorders can hardly be called a peripheral phenomenon in our society. According to statistical evidence derived from nation-wide studies, impairments of speech and language production, often combined with comorbidities like developmental delay, autism, or intellectual disability, affect 3 to 16 percent of all children from birth through age 21 in the United States, and no less than 2 percent of all American children experience severe speech and language disorders. In the state of Oregon alone, these 2 percent amount to a population of more than 17,000 individuals. Data sets published by the National Center of Education Statistics show that 21 percent of all American children served under the Individuals with Disabilities Education Act (IDEA) experience speech and language disorders as their main disability, which is three times more than, for instance, Autism or Intellectual Disability.
My name is Stephanie Utzman. I am the founder of Adler’s Voice, and like many of us, I would probably never have considered the social impact of speech and language disorders, had my life not been touched in the most profound way by the experiences described above. In 2003 my son Adler was born seven weeks premature with a diagnosis of Cerebral Palsy. In an instant my world was turned upside-down. My dreams for his future turned to nightmares of the unknown, of what he may never achieve. After years of intense physical, occupational and speech therapy as well as countless surgeries, Adler has made amazing progress meeting milestones many of his doctors and therapists said would never be reached. However, one milestone he still has not met is expressive communication. Adler also has Apraxia of Speech, a motor planning disorder which causes significant speech delays. Until very recently, all his expressions were a variation of “uh.”
As a parent it is heartbreaking and agonizing to watch your child struggle to express himself, to see the frustration that overcomes him when he is unable to communicate even his most basic needs and feelings – hunger, pain, fear, joy – let alone express his dreams and wishes, desires or preferences. I have never experienced that joyful moment of hearing “Mama” for the first time, or “I love you.” I have never been able to talk to him about what he did in school or what he wants for Christmas. He cannot tell me where it hurts or how he’s feeling. But my darkest fear is of Adler becoming a victim of abuse. He would suffer in silence, unable to ask for help.
This anguish was exacerbated by the hopeless feeling brought on by facing ever new obstacles in the process of advocating for Adler’s access to his most basic human right – speech, in whatever form it may come. Over and over again, his communication needs were not being met. We experienced a reservation towards the idea that high-tech devices can foster the speech development of children with significant intellectual disabilities, and, as a consequence, inadequate knowledge in the implementation of AAC among speech language pathologists and support staff. We found a lack of individualized training opportunities for families with children that have very specific communication needs. Add to these challenges, the expense of acquiring a speech generating device or communication system, and I was left feeling helpless and defeated.
So I decided to do something about it. In 2011 I created Adler’s Voice. Initially, we were a vehicle to get high-tech communication tools into the hands of the children who needed them, but through the years we have evolved to offer a three-pronged approach to supporting the needs of children with complex communication needs. Our goal is to ensure that every child has a voice by providing the technology, support, advocacy, and training necessary to acquire expressive communication.
In the last years, we distributed over 160 AAC devices to children throughout the state of Oregon, and our grant program has been accessed by 146 children. Each grant beneficiary of Adler’s Voice as well as their family have received our continuing assistance in the process of implementing the communication technology we provided, including, for example, the set-up of an individualized communication device tailored to the specific needs of the grant beneficiary, constant technical and use support, and, since 2016, full-scale peer-to-peer training. Additionally, we have partnered with five different schools and education service districts which lack adequate funding for technology assistance. These schools are using AAC devices provided by Adler’s Voice so that they can support the communication needs of the children they serve, and 96 children are benefitting from having access to high-tech communication devices during their school day and therapy sessions.
We developed a high-quality and accessible training program that offers online and in-person training opportunities to both professionals and families. Our online training courses bring specialized AAC knowledge and tools to our most remote and underserved areas of the state, and beyond. In 2016, our “AAC Bootcamp” conference was attended by speech language professionals from ten states, including Oregon, illustrating the need for quality training opportunities in the field of Augmentative and Alternative Communication. These trainings have been accessed by 273 professionals. All of our trainings are offered at no cost to families, and 98 parents have attended our trainings courses.
While we are very pleased by these outcomes, we acknowledge there is so much more work to be done. Please help us give these children a voice! If you would like to support our work, and make a difference in the life of a child like Adler, please consider making a donation today. Every little bit helps! And we are always looking for volunteers, so if your time is your gift, please contact us!