One Family’s Journey

How  Can Serendipity Lead to  Falling Through the Cracks?

By Carianne Tucker Muse, Georgia H&V

When we first found out that Ella referred on her newborn hearing screening, we went through all of the natural emotions…confusion, fear, concern, love, and hope.  We even showed some signs of denial in the early weeks.  I felt lucky, however, because I knew a lot about how the system was supposed to work.  Just a few years prior to Ella’s birth, I worked as a management consultant on the strategic plan for the Center for Disease Control’s National Center on Birth Defects and Developmental Disabilities. During that process, my work team got an overview of the CDC’s related partners, including those who dealt with childhood hearing loss and child development. I was introduced to the Early Hearing Detection and Intervention program’s 1-3-6 rule for screening and follow up.  Six months after we finished the Center-wide plan, we were asked to do a similar plan for the Division of Human Development and Disability. We worked very closely with the EHDI team and designed the Division-level priorities and external vision and mission. I felt like I knew a lot about the ideal scenario for a child with hearing loss and what to expect from the public systems that would support us in our home state. 

A couple of other serendipitous things also occurred prior to or immediately after Ella’s diagnosis. I remembered that while volunteering on a non-profit board, that the board president at the time was also the Executive Director of the Atlanta Speech School, which was less than 4 miles from our house. Our diagnostic audiologist at the birthing hospital happened to mention that they were one of several options for early intervention for us. Within a month of Ella’s birth, I was in touch with the Parent-Infant provider at the school and when Ella was just five weeks old, we took a tour. That Parent-Infant provider was very integrated into the Part C system and helped us find the most qualified and knowledgeable case manager. That case manager, who was trained as a generalist, had a deeper understanding of deafness than most and helped us write a set of IFSP goals that made sense for Ella.

Even with all of this good fortune, there were times when we were still bewildered with choices and information along the way. We had many questions. How do we read an audiogram? How do we decide on a communication or language choice for our daughter? How do we select the right hearing aids for her? How do we know that our early intervention option was working for her? If she also needed physical therapy for her mild hypotonia (or “low tone”), should the physical therapist or our teacher of the deaf be listed as our “primary service provider” on Ella’s IFSP?  How would we deal with her chronic middle ear infections and how would this impact her care or the benefit she would get from hearing aids? Should we go forward with cochlear implants, despite the controversy surrounding them, and if so, should we do one or two implants? Wow. This was harder than it looked from my small window into the ideal process. At the same time, I began to wonder how other families managed this process. Again, I had the good fortune of easily finding a network of families that could serve as mentors for us. Instinctively, I knew that not everyone was so lucky in my state or across the nation, for that matter. While our path seemed to have the stars aligned and the wheels greased, I was hearing stories from parents around me that the road was much bumpier for other families. I counted my blessings, joined Georgia Hands & Voices, and vowed to try to make the path smoother for others so that serendipity was not the reason for success for any child. 

Almost three years later, we were faced with a much more challenging set of hurdles that could only be blamed on the fact that we had been lucky (and persistent) early on. Ella was measuring at the top of her two year old preschool class at the Speech School and we had to make another set of hard choices. Should we leave the self-contained bubble that was provided to us at the school? Should we venture into the mainstream with a three-year old child?  We understood that both options had risks: on one hand we would be taking her out of our newly developed community of parents and kids who are deaf or hard of hearing; on the other hand, we might be holding her back from her potential by not giving her a larger, more diverse group of peers to learn from.

Ultimately, our decision also included financial, geographic and logistical issues. You see, if we stayed at our current school, we would be responsible for full tuition because there was no public support in our state for listening and spoken language services beyond three years old. We were, thus far, getting some minimal support from our early intervention program, but that was going to go away when we transitioned out of early intervention. Our income was too high to qualify for a scholarship from the school. The school had plans to mainstream Ella most of the week with only a few specialized services in the afternoon, but the tuition was much higher than most mainstream preschool tuitions. So we started to question the value we would be receiving from the program if we kept Ella at the school. We were also planning to move about 25 minutes away from the school over the summer. Being a two-career family, we were not sure how the school schedule, plus additional childcare, would work out logistically and financially. 

What we were sure about was that we wanted a quality preschool situation with a five-day program, a smaller class size, good acoustics, willingness to use a personal or sound field FM system, and a location closer to our new home. At the time, we were open to both self-contained and mainstream options as long as the program had on their rolls at least one other student who was deaf or hard of hearing (an indicator of experience with DHH children and potential peers and parents to connect with). Those were our must-haves. If we needed add-ons, like speech therapy, we could do that through a private provider.

When we started researching local options for us, we decided to hedge our bets and apply to a private preschool in our new city to see if she could get in on her own merits. We were researching public options as well, but started to realize that the key was going to be “qualifying” for special education services. In our state, funding decisions are made based on need.  To qualify, Ella would have to demonstrate a need, defined as a developmental delay or a negative impact to her education caused by her hearing loss. We knew from talking to teachers and parents at the Speech School, that oftentimes, the students who did well there were not qualifying for services from the school system because they had age appropriate language and academic skills at three years old. This was not encouraging us to hope for an appropriate self-contained classroom placement for Ella. Additionally, there were no available public options for a mainstream three-year old preschool within the school system. Private school was looking like our best option.

Months went by as we waited for three important things: an intake evaluation within the county school system, a decision from the Speech School as to whether Ella would graduate from the program, and an admission or rejection letter from the private preschool we had applied to.  At about the same time that we learned that Ella was accepted into the private preschool that met our specifications, we also learned that Ella would be graduating from the Speech School on her third birthday, June 5, 2012. We were ecstatic and nervous for the new chapter we were about to write in the history of our family. Although we had not yet had our intake evaluation from the county school system, we opted to sign our agreement with the private preschool and move into the mainstream, with weekly AVT/Speech Therapy support to keep up with language development and pre-literacy skills. We made a beautiful video of Ella’s graduation speech as she was awarded her first ever diploma, and we forced ourselves to peel away from the school we loved. Little did we know that we would be questioning our decision within a few weeks.

In August, we had our first meeting with the school and they had suddenly changed their tune about using Ella’s FM system. We already had a tuition contract and really no other available placement for her that met our family criteria. So, we decided to give it a go without the FM and see if we could educate the staff along the way, hoping that we could have that additional piece of equipment in place by the winter break, if we thought we needed it.  Knowing that the other child who was deaf at the school did not use one, we thought maybe we were making assumptions about Ella’s needs and that we needed to employ a “wait and see” method.  Plus, we already had enough equipment education to do in the beginning on the CIs themselves and were a little relieved to put that off. Then the behavior problems started and papers came home incomplete due to “not following directions.” We knew we had to move into full advocacy mode to get the school to use the FM system and if we failed, we had to find Ella a new placement mid-year.

After four months of education and advocacy, visits from the mainstream specialist from our Speech School, lots of meetings, and a ton of worry, we started hinting to the administration that we felt it was an Americans with Disabilities Act (ADA) violation for the school (even a private school) to deny our child full access to the classroom. We consulted two attorneys, who agreed with us, and we finally convinced the school to implement a personal FM system for Ella. We are certainly not experts in how to advocate because we are learning while we go, but we did have trouble locating the right resources and research to support our daughter’s need and make a convincing argument. As I always do, I started to worry about other families: how will others navigate the transition to mainstream school at three years old without access to shared experiences. Do others really need to go through all the obstacles that we did to find (and tailor) the right placement for their child without an IEP in place?

Families today are fortunate to have the advances that are being made in early identification, early enrollment in intervention services, and therefore are starting to see more and more early successes of children and great outcomes at age three. I believe that we will start to see an increasing trend of children who have nowhere when they enter Part B because they have been so successful thus far.  How do we, as Hands & Voices chapters ensure that the child who has been successful through Part C can now go out in the world and not lose ground on language and literacy between the ages of three and five?  Here are some things that I think could be helpful suggestions in Georgia to proactively address this need and keep kids on a successful trajectory to literacy when they mainstream at an early age:

• Create and support public options for three-to-five- year old services across all communication choices, as well as a full continuum of academic and language development needs, including those ready for mainstreaming
• Increase focus on appropriate mainstream opportunities based on child and family outcomes, choices and needs rather than an arbitrary program goal to mainstream children by five years old that is sometimes assumed by listening and spoken language programs
• Consider modification of IEP requirements to include monitoring of three to five year old children for family-chosen goals,  such as pre-literacy skills, when the child does not otherwise qualify for services
• Make pre-literacy skills a high priority for monitoring and maintenance for three to five year old children who do not qualify for IEP services at Part C transition
• Find and build appropriate general education placements for children who are DHH, but ready for mainstream before kindergarten
• Extend H&V Guide By Your Side and other parent support networks through to age five (where they don’t exist) to help provide parents with resources to ensure that mainstream placement does not result in delays by kindergarten
• Support families in educating general education preschools on aspects of hearing loss by creating materials (such as how to get an FM system into a school that has never used one)
• Document and track academic and social-emotional outcomes of children who are mainstreamed early to better understand the risks and benefits
• Research and communicate what criteria parents who are searching for a mainstream placement should be looking for to make the transition as successful as possible for their child.

In a way, we are acutely aware that it is a blessing to have this “problem,”when so many other families may have encountered additional hurdles along the way, but for our family, it was so scary to know that all of that luck and hard work would actually create an educational dilemma for us at our daughter’s transition to Part B. The bottom line is that early intervention pushes for the best possible outcomes. In our experience, when everything goes right and the goals of EI are achieved early, we need to 1) not hold the child back from their full potential, but 2) not set them up to lose precious ground before kindergarten. Ages three to five may become more of a significant focus in the coming years for deaf and hard of hearing services. As Hands & Voices chapters, we can consider how to address this in advance of a widespread need. Personally, I plan to look for ways to take the serendipity out of each step along the process of educating a child who is deaf or hard of hearing so that no other family in our state falls through the cracks. I want the system, not serendipity, to work right.