Antonia Brancia Maxon Award For EHDI Excellence

Thomas C. Clark

We are nominating Dr. Thomas C. Clark, founder of the SKI*HI Institute, to posthumously receive the Antonia Brancia Maxon Award for EHDI Excellence.

Tom was a pioneer who worked tirelessly to help families whose little ones had hearing loss. Tom was the son of deaf parents. While we don't know if this shaped his interest in early identification and intervention, we certainly know that he had a strong passion for making a difference for families. Because of his pioneering efforts, programs were established all across the country that resulted in very young children who had hearing loss being identified and served.

We met Tom at a National Diffusion Network session in Knoxville, TN, in the summer of 1979, where he presented information on the SKI*HI Curriculum and service delivery model. Key components of that work included:

1. The importance of early identification
2. Working collaboratively with audiologists to secure appropriate amplification
3. Helping parents understand the care and use of amplification devices
4. Working cooperatively with parents to encourage appropriate auditory stimulation and the wearing of amplification 100 % of waking hours
5. Gathering and analyzing data on child progress
6. Helping professionals understand their role of being "parent advisors", since families and their children with special needs are the ones who live with the decisions that are made
7. Helping families have the information they need to make informed decisions about communication methodologies
8. Using data as a basis for dealing with decisions about future needs of children and families
9. Emphasizing the importance of everything that is done being "family centered."

At the time Dr. Clark came to Knoxville, Tennessee School for the Deaf had a home-based early intervention program which served 10-12 families per year, all living within a 70 mile radius of Knoxville. Tom and his staff so ably communicated their message on the importance of early identification and early intervention that the vision and mission of those involved at TSD dramatically changed. The following activities and results emerged:

1. Hosted an awareness session for professionals and parents from across our state to hear Dr. Clark and his staff
2. Worked with the Department of Health to change the birth certificate application to include questions about family history and hearing loss
3. Initiated and implemented a statewide early intervention system to identify and serve young children with hearing loss
4. Hosted training sessions for persons doing early intervention
5. Expanded the scope of the school's hearing aid loaner bank to provide trial and back-up amplification for very young children.

Dr. Clark was truly a pioneer. We would like to see his contribution to the field be recognized by posthumously naming him the 2012 winner of the Antonia Brancia Maxon Award for EHDI Excellence.

Jodee Crace

In Jodee's career as an Early Intervention Coordinator at the Indiana School for the Deaf-Outreach, she helped coordinate the establishment of a successful program that includes Deaf mentors as employed service providers that provide families in Indiana the support they need to help successfully raise their own children linguistically, socially and emotionally. While most Deaf mentor programs provide support to families, they do not compensate the Deaf mentors. This program actually employs Deaf mentors as professional service providers. They acquire the training necessary to provide early intervention services and work alongside other service providers.

The employment of Deaf mentors is achieving one of the goals of JCIH for EHDI programs in which Deaf individuals are employed at all levels of EHDI. In recent years, this need has come to the forefront of early intervention. Jodee's career work, alongside her colleagues at the Indiana School for the Deaf, shows her commitment to quality EHDI services and making EHDI goals a true realization.

Jodee currently serves on the Joint Committee on Infant Hearing and is a member of the Subcommittee that is drafting the 2012 Position Paper. She was also on a subcommittee that drafted Chapter 11 of the EHDI eBook and has served on the Indiana Deaf- Blind Project Advisory Council from 2003 – present. She served on the Indiana EHDI Advisory Committee, 2005 – present and as the President of the American Society for Deaf Children from June 2011- June 2013 (previously was ASDC Board Member 2009-2011). She is also a member of the National Association for Education of Young Children since 2005, Zero to Three, National Center for Infants, Toddlers, and Families since 2007, and Infant Toddler Specialists of Indiana since 2006.

As the Early Intervention Coordinator at Indiana School for the Deaf/Outreach Services she guides and mentors Early Intervention providers who are working with families of deaf and/or hard of hearing infant/young child (i.e.: Parent Advisors, Deaf Mentors, Developmental Therapists); provides direct family centered and home based curriculum with families; consults with stakeholders on appropriate service delivery with families; participates and provides input with various stakeholders contributing to state policies; plans and executes presentations and trainings for providers; and maintains awareness of current trends and issues influencing Early Intervention systems and policies in Indiana and the nation.

In previous professional position in Indiana she has provided therapy sessions with 0-3 Deaf/Hard of Hearing, Deaf-Blind, and Blind children with developmental needs; educated parents and involved siblings on developmentally appropriate activities; taught American Sign Language during natural play occurrences; executed quarterly reports and advised other providers on specific goals. She has participated as a team player during multi-disciplinary evaluation and assessment to determine eligibility and need of services with 0-3 Deaf and Hard of Hearing children and their families, task achievement and parental inputs, providing preliminary information to parents and completing reports within two days; participating as a team member during Individual Family Service Plan meetings; and monitoring effectiveness of goals.

Marcy D. Dicker

We are honored to nominate Marcy D. Dicker, Outreach Director for the Wisconsin Educational Services Program for the Deaf and Hard of Hearing (WESP-DHH) for the Antonia Brancia Maxon Award. Marcy's dedication to the improvement of services for young deaf and hard of hearing children and their families in Wisconsin has resulted in the development of numerous programs, collaborative relationships, family and provider support activities, and ongoing, visionary projects. From 1987-2002, Marcy was the Family Program Director at the Center for the Deaf and Hard of Hearing and developed their Birth to 3 Program. In this role, she organized Wisconsin's First Family Conference; developed a playgroup for deaf and hard of hearing children; provided training and presentations at the national and state levels related to the need to modify practices to better meet the needs of children and families. These activities resulted in collaborative relationships between various agencies with a common focus of improving services. This focus led to a new Birth to 3 Eligibility Statement; development of Principles for Best Practices in Serving Infants and Toddlers Who are Deaf or Hard of Hearing and Their Families; and the concept of a Deaf Mentor Program. Additionally, Marcy was instrumental in securing millions of dollars from a philanthropist donation for the Center to carry out its mission. In 2000, Wisconsin's EHDI Program; Wisconsin Sound Beginnings (WSB) was established. Shortly after, WESP-DHH Outreach was established. The collaboration between these and additional agencies provided a foundational shift from awareness to the provision of quality services. Within the past 11 years, Marcy's vision, leadership, collaborative nature, and passion for improving services has resulted in:

• The actualization of a Deaf Mentor Program
• The establishment of the Annual Family (2001) and Professional Conference (2006)-with increased annual attendance of families and professionals
• The continued updating and printing of Wisconsin's Babies and Hearing Loss: An Interactive Notebook for Families with a Young Child Who is Deaf or Hard of Hearing (Initial printing 2003)
• Birth to 6 Program Consultation
• The Guide By Your Side Program (GBYS) - adopted and expanded by Hands & Voices
• The Wisconsin Infant/Children's Statewide Hearing Aid Exchange Service (WISHES)
• The In-Home Early Learning Program (HELP) - supporting listening and spoken language skills
• Increased Outreach and Support to Underserved Families (Spanish speaking and Hmong)-including Spanish Speaking and Hmong Parent Guides
• The Wisconsin Deaf-blind Technical Assistance Project
• The Western Regional Birth to 6 Redesign Pilot & ECE D/ HH and DB Project
• Participation on the board of Wisconsin Families for Hands & Voices

Marcy's accomplishments have been acknowledged at the state and national level. These have included recognition from the Conference of Educational Administration of Schools and Programs for the Deaf, national SKI-HI Parent Infant Curriculum Trainers, professionals in the EDHI field, and an article in the Odyssey. Her visionary presence has strengthened the EHDI arena in Wisconsin and throughout the nation. These aspects, in combination with her dedication and grace embody the essence of the Antonia Brancia Maxon EHDI Award.

Janet M. Farrell

It is my pleasure to nominate Janet M. Farrell for the Antonia Brancia Maxon Award for EHDI Excellence. As the Director of the Universal Newborn Hearing Screening Program in Massachusetts, Janet has devoted much of her professional life to ensuring that children with hearing loss and deafness and their families have the information, resources and supports they need. Not only has Ms. Farrell been the architect, leader, advocate and public face of the highly successful Massachusetts newborn hearing screening program, but she has also played an important national role.

Prior to passage of the Massachusetts legislation, Ms. Farrell engaged a broad group of stakeholders - including families, consumers who are deaf or hard of hearing, physicians, researchers, audiologists, legislators and public health officials whose input was crucial in passing the newborn hearing legislation. Many of these stakeholders stayed on as an expert Advisory Committee to the UNHS Program and, in collaboration with Ms. Farrell, helped to develop program regulations, guidelines, policies and quality assurance activities.

Over the past 13 years, under Ms. Farrell's leadership, the Massachusetts EHDI program has come to be recognized as a national model, delivered in a familycentered, culturally competent, coordinated fashion that ensures that every baby receives screening, diagnostic services as needed, intervention services and family to family support. In 2008, 99.5% of all babies born in MA were screened. Over l400 were referred to a diagnostic center. Of these, 14% were found to have a hearing loss and almost 80% of these children were enrolled in Early Intervention. A triumph of Farrell's program is that only 4.2% of children were lost to fol1ow-up. The program runs so effectively due to her committed oversight. Her work continues to garner the respect and admiration of countless families, colleagues and top health care professionals.

Ms. Farrell's accomplishments include a strong Family Support program with multiple resources available in 13 languages; outreach and follow up offered by parents of children with deafness and hearing loss who help identify and organize next steps with and for families; a nationally recognized data and tracking system that integrates with other Massachusetts data sources and birth certificate data; strong working relationships with the state Early Intervention system, Specialty Services Programs and the Massachusetts Commission for the Deaf and Hard of Hearing; modeling of culturally competent practices to both public health staff and practitioners, and a commitment to supporting families to receive care for their children Within a Medical Home.

ln addition to her work in Massachusetts, Ms. Farrell has been very active on the national level, participating in CDC and HRSA Working groups. She has provided support to other states and internationally to enhance EHDI programs. She served as President of DSHPSHWA and is the Region 1 representative for NCHAM. Ms. Farrell has coauthored a number of publications including information on Family Satisfaction (American Journal of Audiology, June 2007) and Loss to FollowUp (Pediatrics, February 2008).

Thank you for your consideration of this outstanding individual for the Antonia Brancia Maxon Award.

Terese Finitzo

I have had the privilege of working with Dr. Terese Finitzo since attending graduate school at the University of Texas at Dallas- Callier Center for Communication Disorders in 1983. She was one of my audiology professors, and taught the Introduction to Auditory Brain Stem Response (ABR) and Evaluation and Habilitation of Special Populations/Pediatrics classes. Even in those early years of using ABR as a viable testing method for infants and young children, Dr. Finitzo's passion for universal newborn hearing screening was evident. I recall her speaking to our classes about how this electrophysiological assessment, which she had completed extensive research on, would change the face of audiology, enabling hearing evaluations to be reliably conducted on babies and persons with developmental disabilities. Dr. Finitzo's expertise and enthusiasm in this area led me to a fulfilling career as a pediatric audiologist.

I was fortunate to be contacted by Dr. Finitzo in 1998 to work on the pilot project for newborn hearing screening in the state of Texas. She led a team of audiologists in establishing screening programs in birth hospitals and gathering test data at these facilities to present to the 76th Session of the Texas Legislature in 1999. The goal of the project was to have a mandate passed in Texas that would provide hearing screenings to all newborns prior to leaving the hospital nursery. Through Dr. Finitzo's efforts, the Legislature passed House Bill 714, requiring Texas birth hospitals to have newborn hearing screening programs in place by April 2001. Dr. Finitzo's dedication to this cause has led to the creation of newborn hearing screening projects throughout the U.S. and in Great Britain, Australia, India and Mexico. Dr. Finitzo has continued her work during this past decade to involve audiologists, physicians, parents, early childhood specialists and educators of the Deaf in this worthy cause.

I would like to nominate Terese Finitzo, Ph.D., for the Antonia Brancia Maxon Award for EHDI Excellence. Dr. Finitzo is an exemplary educator, researcher and clinician. Her contributions in the area of identification and intervention of hearing impaired newborns has had a profoundly positive impact on the lives of thousands of children.

Ferdinando Grandori and Deborah Hayes

The phenomenal collaboration of Professor Ferdinando Grandori and Dr. Deborah Hayes is deserving of the ANTONIA BRANCIA MAXON AWARD FOR EHDI EXCELLENCE. Dr. Ferdinando Grandori has worked for about three decades on modeling physiological functions, innovative methods and technologies for the analysis of biological signals, and their applications to improve health and quality of life. His research interests include: response analysis, interpretation and scoring of otoacoustic emissions; protocols and standards for newborn hearing screening, and early hearing diagnosis and intervention. Since 1994 Dr. Grandori served as project leader of a number of multi-year international projects financed by the European Commission in Brussels (Biomed 1, Biomedicine and Health Program, Quality of Life) on technologies, models and protocols for newborn hearing screening. He is currently Chair of the WHO committee responsible for the WHO Guidelines for Newborn and Infant screening. His greatest contribution and impact on the globalization of Newborn Hearing Screening began with the European Consensus Development Conference on Neonatal Hearing Screening (May 1998) which developed into the NHS conferences. These bi-annual conferences facilitate the exchange of good practice, stimulate research and catalyze improvements and growth in regard to Early Hearing Detection and intervention systems worldwide.

Deborah Hayes, PhD, is currently a professor in the departments of pediatrics and physical medicine at the Colorado School of Medicine and chair, audiology, speech pathology and learning services at The Children's Hospital in Denver, Colorado. She has been a leader in audiology for more than 30 years and has published significant research work in a variety of topics with such illustrious co-authors as James Jerger, Marion Downs, and Jerry Northern. Recently she obtained funding, organized, and directed an international consensus meeting on the identification and management of the child with auditory neuropathy spectrum disorder. The resulting booklet from that meeting was circulated worldwide. She is a fellow of ASHA and served as chair of the Joint Committee on Infant Hearing during the time it issued some of its most important statements on identification and screening of newborns.

The collaborative effort of this dynamic team in joining forces to promote Early Hearing Detection and Intervention systems, firstly by means of a global collaboration among medical professionals and more recently by recognizing the fundamental role of families in the process, has impacted the lives of millions of children with hearing loss worldwide.

Jeff Hoffman

I am writing to nominate Jeff Hoffman for the 2012 Antonia Brancia Maxon Award for EHDI Excellence. Jeff, formerly Nebraska EHDI Project Director, was instrumental and tireless in the efforts to create and establish Newborn Hearing Screening in all birthing hospitals in Nebraska. As a result of Jeff's work Nebraska has an outstanding standard of screening, identification, linkages to systems, follow-up and services for children who are deaf or have hearing impairments. For many years Nebraska has had screening rates in the 98% range with loss to system at 3%.

Jeff Hoffman has worked tirelessly with family leaders in the state to create systems that are easier to access. With his encouragement the Funding Toolkit for Parent of Children who are Deaf or Hard of Hearing (D/HH) was developed and published. Roots and Wings, a parent networking weekend for families with children birth to 3 is offered twice a year to assist families in learning about the systems available in Nebraska and build relationships with other families in the state. Nebraska being very rural/frontier means families with children who are D/HH may be alone in their communities and knowing other families helps them better access services and understand their own family development with a child with special needs.

Jeff Hoffman has done all this and more in working in the state system to ensure children who are D/HH and their families can safely and securely move into a future that is ready for all children.

Mariah Ranko and Marbely Barahona

Louisiana EHDI is honored to nominate Mariah Ranko and Marbely Barahona for the Antonia Brancia Maxon Award for EHDI Excellence. Both are parents of children with hearing loss who have provided immense guidance, insight and knowledge to our state program. Mariah has been actively involved with LA EHDI for the past 12 years. Marbely joined the LA EHDI team 3 years ago as a Spanish translator for families.

We feel Mariah Ranko is one of our strongest LA EHDI team members. The mother of two children with hearing loss, she has truly "walked the walk" and is quickly learning how to "talk the talk" in a way that makes people listen intently to her story – more often than not, bringing her audience to tears. She shares her tears of joy for the success of her son and daughter. She brings tears of happiness to us for the contributions she so eagerly shares with her peers. She thoroughly enjoys sharing her family's story with parents and professionals as she gives talks across the state to nurses, audiologists, hearing screeners, audiology students and others. A humble woman, she occasionally comments "but I don't have a college degree…." Our team has the utmost pride in Mariah's work and what she has accomplished for our program. She has spearheaded the development of Hands and Voices Louisiana and is currently working to bring Guide by Your Side to our state. Her value to our program is her faith in her children, her life experiences as a mother and her love for what she does. She shared her experiences because she sees the potential in her children and those in similar situations. Her goal is to help hearing impaired children, her own and others, reach the stars and beyond.

Marbely is the mother of six beautiful children and her oldest child, Asahel, has a hearing loss. Her pride for Asahel and his accomplishments shines as she talks with parents and professionals. She has contributed so much to the welfare of our Hispanic families with family contacts, translating materials and helping us to understand cultural beliefs. Marbely is currently participating in the NICHQ Learning Collaborative as a member of Louisiana's core team. She continually suggests unique ways to enrich and improve our program from every aspect. She is a member of the CDC Diversity Committee and is helping translate "Decision Guide to Communication Choices," into Spanish. Although Marbely contributes to our EHDI team in so many ways, the time she dedicates directly guiding families is the most meaningful for her. It is not unusual for Marbely to accompany a family on a doctor's visit, or sit with a family during a long surgery, or help a Spanish-speaking family to make appointments for their child or attend an early intervention home visit with another family to translate.

We are very thankful and proud to have two outstanding ladies as key players on our team. They have made valuable contributions to our program and the EHDI experience to all Louisiana families. Mariah and Marbely are "awards of excellence" for us.

Gail Tanner

This letter is written to nominate Dr. Gail Tanner for the coveted Antonia Brancia Maxon Award for EHDI Excellence, to be presented at the 2012 National EHDI Meeting in St. Louis, Missouri.

Dr. Gail Tanner has been the EHDI coordinator in Illinois since newborn hearing screening was mandated in 1999. Gail has been instrumental in advancing EHDI efforts in Illinois and has worked tirelessly to improve the system for children with hearing loss. Early on, Gail recognized the importance of having an effective data system and organized a think-tank with an interdisciplinary group of stakeholders to work through critical issues related to communication, reporting, data management, and data driven decision making for program accountability improvement.

Gail is a consistent presence and never hesitates to travel throughout the state to visit hospitals and audiology clinics to provide support, information, and educational outreach. Gail is a leader who promotes and supports professional development and collaborates with other stakeholders to provide quality, comprehensive-training opportunities for audiologists, AuD students, and other health care professionals. Gail is a visionary in her approach to EHDI and a creative leader who is solution-focused.

Gail will be retiring in February 2012, and she has been a positive force who provided a solid foundation in Illinois for future children, families and professionals.

Betty R. Vohr

Betty Vohr MD, FAAP is Professor of Pediatrics at Brown University School of Medicine and Director of the Neonatal Followup Clinic at Women and Infants' Hospital of Rhode Island. Dr Vohr is one of the true pioneers of EHDI, with a career that spans over 30 years. She has been conducting outcome studies and trials of interventions to improve the outcomes of high-risk infants, including premature infants, infants of gestational diabetic mothers, and infants with permanent hearing loss since 1974. For over a decade, Dr. Vohr has served on the American Academy of Pediatrics (AAP) Task Force on Improving the Effectiveness of Newborn Hearing Screening, Diagnosis, and Intervention, and she is a pediatrician representative on the Joint Committee on Infant Hearing (JCIH).

Dr. Vohr has been "leading the EHDI charge" for nearly three decades. On her list of many accomplishments to improve the lives of children and families dealing with hearing loss, a few that stand out are:

• She was the Chair of JCIH during the development of the 2007 Position Statement that outlined new guidelines of care for children with hearing loss, including identifying hearing abnormalities in newborns (with separate protocols for those in well baby care and neonatal intensive care); follow-up medical evaluations; early intervention services from experts in hearing, speech and communication; regularly scheduled language screening and hearing surveillance during early childhood; parent education and counseling that is well-timed and tailored; and data tracking systems at the state level that support the development of evidence-based public health policies for all children, no matter their geography, socio-economic status, or ethnicity.
• She is a lead author on a number of hearing-related publications on such topics as EHDI and the medical home; assessment of Rhode Island's hearing program; evaluation of screening equipment technologies; and more.
• She was integral to the development of several AAP EHDI provider education resources including the CME course "Childhood Hearing: A Sound Foundation in the Medical Home," designed for practicing pediatricians and other pediatric health professionals. This module focuses on early identification, and promotes the integration of developmental screening and public health screening into the medical home.
• She continues to serve on AAP EHDI Task Force since 2001, a group that helps steer the hearing-related efforts of the AAP at the policy, practice, education, and advocacy levels.

The following words by Dr Vohr are true in part because of her own passionate advocacy:

"We're living through a period of enhanced optimism about children with hearing loss. We've seen the incredible differences made by early identification and early amplification, and I think the opportunities for children with hearing loss, no matter which mode of communication is used, will continue to improve."