Where in the World Has EHDI Gone Now? Saipan !
Hafa Adai! Hello! As part of an EHDI (Early Hearing Detection and Intervention) funded program, I watch two year old B.J. sitting, feet up, on the wide railing of his front porch with early intervention teacher Tona Erlet and occupational therapist Michelle Huet. B.J.'s teachers are playing, talking, and signing with him about a box he is enjoying, all the while encouraging him to scoot along the railing to promote strength and goal-oriented, coordinated movement. To B.J, it's all play.
Michelle and Tona wait and watch for his reactions and choices. They respond to him. They give him time to process their actions and enticements and patiently wait for his attention to shift between toys and people. It's a very hot, humid afternoon but a breeze from the ocean blows the Saipan palms and cools us a bit. Being barefoot helps. This is my first visit to B.J.'s home and the first time I've seen Tona and Michelle work together. Why do I keep thinking of a delicate, choreographed ballet? I'm almost mesmerized by the calm flow of the game. Tona and Michelle play off of each other's interactions with B.J. as if they were one person. Michelle provides language when appropriate and Tona, motor stimulation. Role release comes naturally to these two professionals--they reinforce the other's goals. Clearly, they've done this before.
During the game B.J.'s mother, Debra, and I sit on the porch and talk. We watch the game and interpret what we see. I want to know all about B.J., his use of pre-verbal and symbolic communication, his use of hearing and vocalizations, his play and problem solving. Before I can ask one question, Debra begins sharing with me everything I want to know. She is a keen observer of her son.
EHDI is working in Saipan, way out in the western Pacific? It sure is! And what's newborn hearing screening without appropriate early intervention? Not a good idea, of course.
Did I hear the trade winds calling my name? I had the honor and pleasure of working for four months in the CNMI, as the Commonwealth of the Northern Mariana Islands is known. I served as a consultant/mentor and trainer for EI and special education professionals who serve families and their infants and young children with hearing loss. Most all personnel serving these children are trained to work with all disabilities, but none are specialists with infants and young children with hearing loss except for the audiologist. I participated in programs for deaf and hard of hearing children through grade school age and also with the deaf and hard of hearing adult community. One of my greatest joys while in the CNMI was seeing the strong interest in understanding hearing loss and how it affects learning and in meeting these children's and families' needs. My work with all personnel was definitely a two-way street. I shared what I know about hearing loss, and they provided me with essential information about services and cultural/linguistic factors in their communities.
Where are the Mariana Islands ? If you are my age (secret info) or older, you no doubt have had a friend or relative involved in the World War II battle of Saipan . The Marianas are the northernmost islands in Micronesia, around 1,000 miles south of Japan and over 6,000 miles from the U.S. Pacific coast. Saipan, at thirteen by five miles, is the largest of the fourteen islands in the 426 mile long Northern Marianas chain. The Northern Marianas are actually the tips of a mountain range that rises six miles from the sea floor. Individuals born in CNMI are U.S. citizens, but they don't vote in U.S. elections.
EHDI programs are available to the CNMI because it is a U.S. Commonwealth and agencies in commonwealths and territories like the CNMI and Puerto Rico can apply for U.S. federal grants. EHDI made its way to the CNMI six years ago when the Department of Public Health received funding to launch newborn hearing screening and provide training in serving families with deaf and hard of hearing infants and toddlers. Equipment was purchased and the hearing screening program was soon up and running in the Commonwealth Health Center (CHC) in Saipan where all the CNMI hospital births occur. None of this would have happened were it not for the vision and continuous hard work of two key individuals: Dr. Angie Mister, a dynamic young audiologist originally from the U.S. mainland, and Margaret Aldan, Maternal and Child Health Program Coordinator for DOH. Now after six years in operation, Angie and the staff at CHC have a superb track record. They have beaten the U.S. national average in percentage of newborns that return for follow-up testing after receiving a "Refer" on the initial hearing screening using AABR (automated auditory brainstem response). "Refer," means an abnormal result on the initial hearing screening. In 2005, Angie and the nurses she had trained tested 99% of all babies born at CHC, had a refer rate of 6% and a lost to follow-up rate of 40%. Those babies lost to follow-up did not return for the necessary second hearing screening. The U.S. lost to follow-up average is around 50 %. Even a 40% "no return" rate was not good enough for these folks in Saipan . They continued calling families for return test appointments and got the 2005 lost to follow-up rate down to 30%. CNMI does not have a law mandating newborn hearing screening. They have volunteered to do it, and the hospital adopted it as a Standard of Care. The real plus in their program is the collaboration between the hospital ( Commonwealth Health Center ), the Department of Public Health and the CNMI Public School System, linking identification directly into Early Intervention.
Hold onto your hats as I tell you that the CNMI has served young children with developmental concerns since 1983, before the population became U.S. citizens. Twenty-three years ago a local pediatrician was seeing so many families that wanted services for their young children with special needs, when no public services were available, that a group of parents and professionals was assembled to run an early intervention program on a completely volunteer basis. They quickly wrote a grant and the CNMI Department of Public Health received funding in 1984. One of their first employees, Viola Kaipat, remains a key staff member at the Children's Developmental Assistance Center (CDAC) as a Family Care Coordinator. I had the good fortune of sharing her office, enjoying her warm welcome, humor and laughter. In the late 1980's the CNMI Public School System became the lead agency serving young children with special needs and in collaboration with the Department of Public Health began formally serving infants, toddlers and preschoolers. The programs have grown, managed with care by Suzanne Lizama and Joanne Nicholls, following the requirements of IDEA and supporting personnel in continually upgrading their skills as our entire special needs professions refine and perfect strategies for better serving families and children. EHDI now provides for a training focus on hearing loss in infants and toddlers.
Our workshops, individual consultation and collaborative work with families focused on many areas that included:
The three largest inhabited islands in CNMI are Saipan, Rota and Tinian . Audiology and special education services are provided on all of these islands. On my first visit to the island of Rota I joined a team for an Annual IFSP review that included assessment through family interview for a 16 month old with several developmental needs. We met with the child and his mother, father and auntie on their front porch. "We" were: the speech pathologist, physical therapist, occupational therapist, on-site teacher from Rota, visiting teacher from Saipan and me. I thought to myself, "Oh dear, this sure is a lot of professionals!" I shrank back in my chair attempting to appear smaller or better yet, not there at all. Well the size of our team won't surprise anyone, but how the group functioned astonished and delighted me. As with B.J.'s individual session the process was fluid, natural and relaxed. The team moved between the different developmental domains, taking turns soliciting information from the family, responding to the family's questions and discussing concerns and possible future goals. They expertly handled a difference of opinion between the parents as to a course of action, avoided giving advice, and left the ultimate decision to the parents to work out. There was frequent movement back and forth between English and the family's first language, Chamorro. Here was trans-disciplinary work in action. When the hour was up, we were all as relaxed as when we had arrived. My head wasn't spinning from too much talking and the urgency to accomplish things. There is no way this family could ever feel overwhelmed after a visit from this large, efficient team that managed to appear like unobtrusive guests just stopping by for a visit. I thought, "So this is the result when most of a team share the family's culture and languages!" Of course, the characteristic warmth, kindness and respectfulness of Micronesian cultures also determined the tone of our hour together.
The CNMI is rich in culture and language. In order to begin to understand and work with families and their children it is important to understand the migratory and colonial history of these islands. The Marianas have been inhabited at least since 2000 B.C. by people whose descendants are the Chamorro of today. In the 1800's a chief from a Micronesian island currently in the island group called the Carolines led his people (the Refaluwasch, an ancient Micronesian culture) over 1,000 miles north to Saipan in their double sailing canoes after an earthquake and typhoon destroyed their communities. These were the ancestors of the present day Carolinians (Rafaluwasch) in the CNMI. Beginning in the 1500's the Marianas have been colonized in this order by Spain, Germany, Japan and the U.S. Following WW II, the U.S. controlled all of Micronesia as a Trust Territory . In 1975 the majority of citizens of CNMI voted to become a part of the U.S and they were declared citizens in 1986. With the influx of American culture, values, judicial system and commerce, the two indigenous ("local") cultures, Carolinian and Chamorro, struggle to maintain their respective customs and languages. There are also sizable numbers of immigrant populations including but not limited to Filipino, Chinese, Korean, Palauan and individuals from the Micronesian States of Chuuk, Yap, Pohnpei and Kosrae. The unique aspects of all of these collective cultures results in a complex and wonderfully diverse community that has clear implications for the provision of culturally sensitive early intervention services.
A strength of the EI program at CDAC is that the first individual a family meets once their baby has an identified disability is one of the Family Care Coordinators. These valuable personnel represent local Micronesian cultures and speak the first language of many of the families, a key to building the family's trust in allowing professionals (many of whom are Americans from mainland U.S. ) into their homes and lives. I found my "local" and mainland American colleagues invaluable in charting a path toward building communication and relationships with local families.
Because hearing loss generally affects language, language acquisition was our primary focus. I had some things to learn in order to brainstorm with teachers and caregivers about ways to present language to individual children. We worked with Carolinian, Chamorro, Filipino, Chinese, and mainland American families. English was often the family's second language, and many used a combination of languages in a variety of ways--some combining languages within one message and others shifting between languages throughout the day. While an orientation to Tagalog and Chinese remain on my list, I set out to learn what I could about the sequence of children's language acquisition and the structure of the Chamorro and Carolinian languages. One of the Speech Pathologists, Laura Bucknell, became my new best friend as she focused on language assessment with school-age kids and has delved into the linguistics of the local languages. Here is some of what I understand about the way the local languages translate to and can affect the English dialect used in a family: "Turn off the light" may be "off the light" and of course "turn on the light" would be "on the light." Turn off the T.V. could be "off the on". I got pretty excited about these structures as they related to how the family could express the same phrase in ASL if they were using Sign Language. One day I thought that I was in real trouble when I was told that there are no prepositions in Chamorro. Then a local professional who is Chamorro said, "Yes there are!" I checked my Chamorro Linguistics text and sure enough, there is a variety of ways of expressing the meaning of an English preposition, depending on context. (This isn't supposed to be easy is it?)
My Micronesian education has just begun, and I look forward to continuing next year where we left off last summer. I am especially grateful to all of the folks at CDAC, my primary worksite away from home, for their warmth, helpfulness and humor. EI teachers Ericka Frink, Tona Erlet, Naomi Diaz, and Robin Palacios, OT Michelle Huet and SLP Margaret Blaz allowed me to join them and their families as we worked to discover how each child learned. One day Ericka found that the key to keeping a two-year-old's hand away from his earmold was to march outside singing: "The ants go marching one by one hurrah, hurrah..." He seemed enchanted by this astonishing behavior of his papa and teachers. On another day, a young mother excitedly showed Ericka new vocal turn-taking games with her baby that Ericka had discussed just one week before. To everyone in the CNMI: Olomwaay! (Thank you and God bless in Refaluwasch). A special salute to Angie Mister who makes so many things happen in the CNMI for kids with hearing loss and to Margaret Aldan who wholeheartedly supports the activities. . Angie and her group are already gearing up for an All Island Family Retreat lead by Family Therapist Marlyn Minkin, Deaf, Deaf-Blind and Hard of Hearing Specialist, and we're laying the groundwork for a local Hands & Voices Chapter.
Nancy Rushmer, M.A., CED