MN Capital Testimony
Out of the blue I received a phone call from a friend asking if I would be willing testify at the MN Capital? To share Levi's story and the changes that have happened in his life as a result of working with his Community Innervener? A bill was being put before the MN House Health and Human Services Reform Committee to support children and adults with Deafblindness and the supporters of the bill needed a first-hand account. Fourty-eight hours later there I was, sitting beside Representative Pierson, the chief author of the bill, sharing our story. By the end of my four minutes, the room was silent and you could have heard a pin drop. It was a beautiful and emotional moment, for I knew that in sharing our story, I was speaking on behalf of all of the MN mothers whose children with deafblindness are in need of Interveners, and all the Interveners who work so diligently with our children.
A week later the same bill, authored by Senator Hawj, went before the Senate Health and Human Service Committee. Two weeks later the House bill was placed on the agenda to be heard by the House Health and Human Services Finance Committee (aka: those who get to decide how to spend their portion of the State budget). Each time I spoke I thought of all of the children who are on a waiting list for Intervener services and the amazing stories that parents tell of the transformations children with deafblindness make when working with an Intervener.
Above is a photo of Levi and his Community Intervener, Anna Kohrs. Below is a copy of my testimony. I hope someday to be able to do this again and incorporate stories from the lives of more children.
Thank you Chairperson and members of the Committee for the opportunity to speak with you today. My name is Dannell Shu, I live in Minneapolis. Today I am sharing the experiences of my son, Levi Shu, a five year old who is deafblind as a result of severe brain damage.
It was Christmastime and we were anticipating the birth of our first child, who would also be the first grandchild on both sides of our family. My pregnancy had gone beautifully. Once my contractions started we were all so excited. Then came the moment when baby Shu emerged and our world changed forever – He was born without a heartbeat or breath, he did not move or cry. Our son, Levi, had been born with severe brain damage. There were no answers as to why this happened.
In the weeks that followed, we learned Levi is deafblind and non-verbal.
Today Levi is 5 years old and has SIGNIFICANT combined hearing and vision loss. His dual sensory loss gives him incomplete access to his environment; he has difficulty learning on his own using simple skills such as observing or independent exploring.
He is different from a deaf child, who can use vision to compensate for what he doesn’t hear.
He is different from a child with vision loss, who can use his hearing to compensate for what he cannot see.
Levi is not able to rely on his vision or his hearing - two important senses that help us to access information. This has made it difficult for Levi to understand what is happening to him, understanding the environment around him, and his being able to develop a formal way of communicating.
When Levi was 4 months old he began working with Early Special Education Specialists including, teachers, OT, PT, DHH, and Vision Impaired teachers, all of whom where top of their field. However it was not until Levi began working with a Community Intervener at age 2 that we began to see profound improvements in his ability to participate and communicate with others and the world around him.
Deafblindness is unlike ANY OTHER disability and other programs alone do not work for him. The vast majority of people do not have the specialized knowledge/training necessary to provide this access for Levi that Interveners do.
A child with Deafblindness is very issolated, even within the context of their own family.
My family has been fortunate to have Anna Kohrs, a Community Intervener, work with Levi in our home. Anna visits a few hours a week. Since Anna began working with him:
Levi has less anxiety which has made learning possible.
Levi understands basic cause and effect
before the Intervener, Levi had no understanding
Levi is able to engage in meaningful independent play
before the Intervener, Levi needed someone always to fully assist him
Levi is able to consistently communicate his emotions and be understood by family and friends
before the Intervener, Levi stopped trying to communicate because he was never understood
Anna, as Levi's Intervener, has transformed Levi's ability to participate in our family life and ability to learn.
There are studies and articles that show with an Intervener:
a child with deafblindness is able to access information and is able to communicate, and excel developmentally.
a child with deafblindness has an increase in communication behaviors, and a decrease in self-regulation behaviors.
a child with deafblindness is more engaged in the environment, people and things.
These studies show positive reports of the child with deafblindness improving developmentally. An example of an Intervener is Helen Keller’s teacher Anne Sullivan. I have met many parents with children with deafblindness, throughout MN, who would attest to these same positive results. Children with the support of an Intervener have gone on to graduate high school, attend college, participate in meaningful jobs.
I believe that for Levi, his Intervener support has greatly helped him achieve critical basic milestones. Milestones he would not have otherwise achieved. Levi is an example which proves early intervention and support from an Intervener will continue to benefit him in the future.
I am asking for your consideration and approval for more funding for deafblindness; to provide funding for more training for professionals and families who support people with deafblindness, and more services for children and families. These resources are CRITICAL.
Thank you Madame Chair and members of the Committee for the opportunity to address you on this serious issue that affects every family with a child with deafblindness in our state.
UPDATE: I am thrilled to share that this bill was one of a very select few new spending bills that was eventually funded by the MN Legislature.
