Access

  It is estimated that there are over 20 million deaf and hard of-hearing children and adults in the United States. I am one of them. However, unlike other physical disabilities, ours is virtually invisible. Unfortunately, this invisibility seems to extend to government and the health care community as well. For example, deaf people have not been counted in the U.S. Census since 1930. The last known count was privately conducted by the National Association of the Deaf in 1971. Even the most essential assistive technology – a hearing aid – is not paid for by most government and private insurers. Recently, I paid $6,800 for new hearing technology – totally out-of-pocket. Many insurers view the devices as cosmetic. The ability to hear and communicate is not deemed a medical necessity.
 
Ray and Jennifer Spellman confronted this reality 11 years ago, when their then six-month-old son Andrew was diagnosed with deafness. I’ve asked them to share their experience.
 
Andrew was our second child. He was a happy baby, alert and always smiling. At the time, newborns were not screened for deafness, so it was not until he was six months old that we first suspected a problem. And only then, it was because of our dog. Andrew would always turn his head toward us when we walked in the room. We know now that he felt our vibration. But one day when we were playing with him we noticed that he didn’t react when the dog barked. That was our “aha” moment.
 
That realization set us off on weeks of testing, retesting, and consultation. One specialist intimated that there was probably more involved than deafness. Retardation, he suggested, was also a possibility. Another physician insisted on a medical “fix” – a cochlear implant. While ultimately, Andrew did have the procedure, at the time, no one could explain to us why surgery was the only answer. And because we had no experience with deafness – no one in either immediate family had any hearing problems – we had no idea where to turn for answers, and no advocates to point us in the right direction. We were on our own.
 
Through trial, error, and tenacity, we identified resources and pieced together a support system. We learned to sign, and taught others as well. Speech and hearing professionals supplied by the Allegheny Intermediate Unit came to our home to work with Andrew on his communications skills. It was one of these professionals who alerted us that starting at age three, Andrew would need to begin attending classes at the Western Pennsylvania School for the Deaf (WPSD). We were told it was our only option if we wanted Andrew to have access to special services until age 18.
 
While we were not opposed to Andrew attending the WPSD, we were concerned about the distance between Moon Township, where we live, and Edgewood, where the school was located. Both of us worked, our older daughter was in school, and another baby was on the way. Bus transportation was our only option. But who wants to entrust their three-year-old to a stranger for an almost 50-mile roundtrip commute five days a week? A three-year-old who can’t talk and can’t hear.
 
Our concern was justified. Within a short time, we received a telephone call from the police. Our son was in their custody. The bus driver had taken Andrew to a nearby bar whose name was similar to our street name. He asked a complete stranger if she was there to pick up Andrew. Fortunately, the stranger was the owner of the establishment, and she called the police. Our son came through the incident unscathed; however, this experience ignited another fight – this time for safe, reliable transportation. It was a battle that played out in the media and ultimately was won through a painstaking fight with the school district.
 
Andrew continued at WPSD until the third grade. While it was an excellent school and provided Andrew with a solid communications foundation, we felt that if he were to reach his full academic potential, he needed to be in a different setting. Our first choice was a private Christian school that our three other children attended. Here again, we were told “no” – not if we expected the state to pay the cost of an interpreter and other support professionals. It didn’t matter that we could demonstrate that costs at the Christian school would be lower, or that there was value in keeping our children together in the same school. Church and state, we were told, had to remain separate. Funding for services was available only in the public schools. No exceptions.
 
Ultimately, we moved Andrew and our other children into a public school setting. We’ve learned the ins and outs of creating a detailed individualized education plan, and a lot more about our rights. Andrew now has a committed team of speech and language professionals, and is thriving in his new environment. Next year, he enters the middle school, and already the elementary school principal is advocating for him to ensure he continues to receive the best possible support. We’re optimistic about his future.
 
But would the outcome have been the same had we not been so willing to fight for his rights? We knew nothing about his disability, the pros and cons of the various treatment options, or the rules and regulations that govern support services. We had to learn as we went. We refused to take “no” for an answer. Yet “no” was the answer we heard most often from people who either didn’t know, or didn’t care.
 
Parenting a child with a hearing disability is a challenge. But the difficulties are compounded when you’re forced to become a full-time advocate as well. What happens to those children whose parents or caregivers can’t – or won’t—do battle? We can only wonder.