Antonia Brancia Maxon Award For EHDI Excellence
BEGINNINGS for Parents of Children who are Deaf or Hard of Hearing, is a nonprofit program founded in 1987 on the premise that most parents, provided with accurate, objective information, are the best decision makers for their child. These decisions involve educational placement, hearing technologies, communication methodology, and early intervention services. Although BEGINNINGS has been committed to the diverse needs of families and professionals since its inception, the leadership of Dr. Joni Alberg, who assumed the role of executive director in 1999, has been vital to its growth and development.
When Dr. Alberg was hired as director of BEGINNINGS, relationships among the various programs and schools serving deaf and hard of hearing children and families in NC were poor, in some cases adversarial. She immediately worked to address this problem by personally reaching out to every program. Today, interagency collaboration in our state is exemplary. It was Dr. Alberg who set a tone of reconciliation and cooperation early in her tenure. However, she credits a staff of skilled and dedicated professionals who work daily with parents and professionals with most of these accomplishments. Specific accomplishments during Dr. Alberg's tenure as director include:
- Development of a BEGINNINGS database in 2000 that now provides the state's most accurate statistics regarding children with hearing loss.
- Expansion of BEGINNINGS services to include direct support of parents, as their children transition from early intervention to public school services at age three.
- A 5-year grant from NCHAM to provide technical assistance to state EHDI programs on providing parent support at each stage of the EHDI process. An important outcome has been the annual "Investing in Family Support" conference. Dr. Alberg has been a key participant in all five conferences.
- Active participation in writing the initial EHDI grant for North Carolina in 2000.
- Co-project director of a pilot longitudinal study to assess the language outcomes of children with hearing loss who had been served in early intervention programs.
- Doubling of the BEGINNINGS budget from a single source in the amount of $503,000 in 2000, to a multisource budget that now exceeds $1 million.
- Production of the DVD "Pathways to Language and Communication" in 2009 for families with newly identified deaf or hard of hearing children.
- Expansion of the BEGINNINGS staff in 2001 to include Hispanic Outreach/Parent Educators who provide direct support to our growing Hispanic/Latino population, with all parent materials available in Spanish.
- Mobilization and coordination of parents, children with hearing loss, professionals, and other stakeholders in the successful enactment of a bill that now requires insurance coverage for children's hearing aids (signed into law June 7, 2010).
- A 22% growth in the number of new families served by BEGINNINGS.
- An 88% growth in the number of home visits provided by BEGINNINGS.
- A 108% growth in number of IEP meetings supported by BEGINNINGS staff.
Dr. Alberg and the staff at BEGINNINGS have developed a model for family service and advocacy that is truly exemplary. We are proud to convey our full and enthusiastic support for this nomination.
It is my pleasure to nominate Janet M. Farrell for the Antonia Brancia Maxon Award for EHDI Excellence. Ms. Farrell, who serves as the Director of the Universal Newborn Hearing Screening Program in Massachusetts, has devoted more than half her professional life to ensuring that children who are deaf or hard of hearing and their families have the information, resources and supports they need. Her twin commitments to children and families and public health inform and enrich all her work. Not only has Ms. Farrell been the architect, leader, advocate and public face of the highly successful MA newborn hearing screening program, but she has played an important national role as well.
Ms. Farrell has led the Massachusetts EHDI program since its inception in 1998 following passage of Chapter 243 of the Acts of 1998: An Act Providing Hearing Screening of Newborns. Prior to passage, 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 12 years, under Ms. Farrell's leadership, the Massachusetts EHDI program has come to be recognized as a national model, delivered in a family-centered, 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 1400 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 Ms. Farrell's program is that only 4.2% of children were lost to follow-up. The program runs so effectively due to her committed oversight and 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 MA data sources and birth certificate data, strong working relationships with the state EI system, Specialty Services Programs and the MA 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.
In 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 has worked with a number of other countries to set-up and enhance EHDI programs. She served as President of DSHPSHWA - Directors of Speech and Hearing Programs in State Health and Welfare Agencies - and is Region 1 representative for NCHAM. Ms. Farrell has co-authored a number of publications including information on Family Satisfaction (American Journal of Audiology, June 2007) and Loss to Follow-Up (Pediatrics, February 2008).
We are pleased to nominate Debra Lochner Doyle for the Antonia Brancia Maxon Award for EHDI Excellence. Debra is manager of the Genetic Services Section of the Washington State Department of Health. If not for her initiative, leadership and management skills, it is doubtful that - despite having no state mandate - we would have 100% of our birthing hospitals participating in newborn hearing screening, a successful tracking and surveillance program in place, and 74% of counties with at least one service provider trained to provide appropriate early intervention supports to families.
We represent eight State agencies or programs, and all commend Debra for her exemplary leadership in getting our Washington State EHDDI program up and running. Deb has brought together representatives from a multitude of state programs, with sometimes divergent ideas, to work together toward common goals. One example of this is Washington's "Best Practices Guidelines for Early Intervention for Children Diagnosed with Hearing Loss," which represented a consensus of a large work group consisting of family members, agencies, and specialty programs. When these meetings began, some doubted that the charge given to the group could be accomplished. Through Debra's positive spirit, we-can-do-it attitude, and facilitation skills, we did it! This document continues to provide guidance for early intervention providers.
Despite the economic challenges that our state has faced in the last several years, Deb has managed to juggle, solicit, and manage funding from several sources to keep programs afloat and moving ahead. She worked with the Lions Foundation and the Washington State Hospitals Association, as well as individual hospitals and providers, to promote universal newborn hearing screening. Under her leadership, the percent of infants screened for hearing loss in Washington rose from 4% in 1998 to 95% in 2009.
Deb also has been instrumental in creating platforms where professional and community partnerships can form. She obtained grant money to host three EHDDI summits, bringing together stakeholders from across the state. These summits have encouraged the creation of County EHDDI Teams that work to improve the EHDDI system in their community. Debra also initiated collaboration to link EHDDI with Washington's Part C program, to help decrease loss to follow up and the time it takes for infants and families to reach early intervention supports.
An advocate for families, Debra has championed weekend family learning events, including funding scholarships to support families of birth-to-three year olds who are deaf or hard of hearing and supporting volunteer participation from the Department of Health to assist with the weekend. Deb also was instrumental in helping establish a state chapter of Hands &Voices as well as a related "Guide By Your Side" program, and works toward their success in Washington State.
Deb's leadership and initiative are all the more noteworthy and commendable because she began this work with no particular background knowledge of the specialized needs of infants and toddlers with hearing loss and their families, but rather with an open heart, curious mind, and willing attitude. We look back at what we have accomplished with amazement and gratitude for Debra's unique skills, commitment, and personal traits that have fueled our EHDDI engine for the last decade.
Please accept this nomination for Jeff Hoffman, M.S., CCC-A for the Antonia Brancia Maxon Award. Jeff developed an outstanding EDHI program for Nebraska in a very short time. He ensured that the NE-EHDI program addressed every component of care, with an emphasis on increasing parent involvement, training and parent-to-parent support. During his tenure as EHDI coordinator in Nebraska, Jeff: 1) brought in extramural funding to develop the program infrastructure, 2) fostered collaborations among agencies that did not exist previously, 3) trained screeners, medical providers, and other relevant parties throughout the state, 4) developed and implemented an innovative workshop series (Roots and Wings) to address the need for newly identified families to connect with others, and 5) participated in the NICHQ collaborative and brought innovative ideas back to our state.
Jeff has been a tireless advocate for EHDI, and a consummate collaborator and leader, who brought so many agencies together on behalf of families. He continually focused on lowering the number of babies lost to follow-up. To implement the many aspects of the NE-EDHI program, he assembled a highly effective, phenomenal staff. He formed partnerships with audiologists, nurses, physicians, hospital staff and administration, services coordinators, support personnel, teachers of the deaf and parents. He developed strong partnerships with the professionals in the state in information technology, epidemiology and vital statistics and was effective in leading large and diverse groups of individuals. He also oversaw the implementation of a progressive parent support network, a much lauded data collection tool, and expanded continuing education opportunities for state audiologists.
Professionals and families in other states have benefited from his expertise and innovative approaches to partnering via his national education outreach through the American Speech and Hearing Association (ASHA) and his work to establish a Hands & Voices chapter for Nebraska. In 2007 Jeff was honored by ASHA with the Louis M DiCarlo Award for Outstanding Recent Clinical Achievement. Jeff's leadership skills were also recognized by his his election in 2008 as President of DSHPSHWA. In 2010, he was recognized by MCHB for excellence in Collaborations and Partnerships.
Jeff has created and fostered partnerships with local, state and national organizations and with numerous individuals to produce an innovative, effective and nationally recognized newborn hearing screening and follow-up program for Nebraska children and families. It is his leadership, dedication, and his impressive abilities in supervision and management that ensured the continued growth and ongoing success of Nebraska's EHDI Program.
Jeff has supported and facilitated numerous processes and programs that ensure a coordinated EHDI program that reaches and impacts families. For example, he directly facilitated the establishment of a Hearing Aid Loaner bank. He developed an infrastructure that led to integration of the NHS tracking and quality assurance data into the Vital Records data system that vastly impacted the system's efficiency.
Jeff was a valuable participant on the ASHA working group that developed the evidence-based technical report, "Loss to Follow-up in Early Hearing Detection and Intervention." Currently, Jeff is participating on several subcommittees of the EHDIPALS (EHDI Pediatric Audiology Levels of Service) Advisory Group. This group of experts is working to develop the first national online pediatric audiology facilities directory that will allow families to identify appropriate audiology services for their children in a timely manner. Jeff is also lending his support to the ECHO project - improving the identification of preschool children with hearing loss who were either lost to follow-up or who have acquired hearing loss over time. These are only highlights of some of the many activities that Jeff has been engaged in over the past several years.
The Centers for Disease Control and Prevention (CDC) EHDI Team would like to nominate Dr. June Holstrum for the 2011 Antonia Brancia Maxon Award for EHDI Excellence. Dr. Holstrum was instrumental in establishing the EHDI program at CDC, served as the first CDC EHDI Team Lead and directed the program from 1999 - 2002. She received her Ph.D. in Education from the University of Florida in 1979 where her primary areas of study were Infant and Child Assessment and Intervention, and Parenting Education. Throughout her career she has been dedicated to improving developmental outcomes for children. As the first Team Lead of the CDC EHDI program Dr. Holstrum was responsible for defining the vision of the program and developing the foundation for how the program would work with states and other partners to ensure infants with hearing loss are identified and receive intervention services. In this role, Dr. Holstrum was instrumental in developing and implementing a range of activities that led to improvements in EHDI programs. These included:
- Overseeing the development and award of the first series of CDC EHDI cooperative agreements to states. These agreements supported the development of tracking and surveillance systems that helped to ensure all infants were screened for hearing loss and received recommended follow-up services. These systems have gone on to become an integral part of the infrastructure of state EHDI programs. Due to this and continued support every state and several territories now have an EHDI tracking and surveillance system.
- Coordinating and providing ongoing technical assistance that helped develop and strengthen state EHDI programs.
- Actively supporting research in areas including the causes of hearing loss, psycho-social issues, efficacy of protocols for screening, and the cost and effectiveness of EHDI programs.
- Creating strong and lasting collaborations with the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA) and other national partners.
After retiring from the EHDI Team Dr. Holstrum has remained actively involved in the world of EHDI by serving as a consultant with the CDC EHDI program, during which time she has provided expertise in several areas including early intervention and the impact of mild and unilateral hearing loss on children.
Through more than a decade of active leadership and involvement Dr. Holstrum has made notable contributions to the EHDI community and helped to ensure that infants with hearing loss are identified and receive intervention services.
Jean L. Johnson's career spans four decades, focusing throughout on all aspects of EHDI - early, hearing, detection, and intervention. Jean's first degrees were in Deaf Education and Audiology, later augmented with a master's and a doctorate in Public Health. Jean served the people of Guam as a clinician and chief public health officer, then the children of Hawaii as Project Coordinator of the Zero-to-Three Hawai'i Project. In that role Jean directed the statewide project to plan and implement early intervention services for infants, toddlers and their families. She worked with the Hawai'i Early Intervention Coordinating Council to develop policies for the provision of services and projections of cost and methods of financing such services. She drafted legislation for mandating early intervention services for the state and drafted the first state mandate for newborn hearing screening. In her current position with the Center on Disability Studies at the University of Hawaii, she continues to obtain competitive federal grants for special projects and administers and monitors grant performance. Across the decades, Jean has been honored with awards for Outstanding Services to the People of Guam, Outstanding Contributions to Early Intervention Services in the State of Hawaii and the Nation, advocacy for children and youth, advocacy for persons with disability, and many other awards including humanitarian and leadership awards from a variety of organizations. Jean began publishing her work in the 1980s and continues into the present.
Beyond the sheer scope of her achievements, I'd like to speak to some of Jean's qualities that make her contributions "excellent." I had the privilege of meeting Jean in 2000 and working with her for about 5 years when she was the Prinicipal Investigator of a multi-center grant from the Association for Teachers of Preventive Medicine through the Centers for Disease Control. This time period is relatively brief in the span of her extensive career, but I am confident that my observations and experiences represent those of others. Jean surrounded herself with people who had skills or expertise she did not, thus assembling a team with multiple skills. Through telephone conference calls, email, and only an occasional meetings, she delegated work appropriately. She was organized and efficient. She was energetic and assertive - without being pushy. She made the most out of the project, presenting the data to a variety of different disciplines at 8 meetings in the United States, Europe and Asia. The project resulted in 5 publications and Jean recognized everyone's contribution with a list of authors that filled the title pages.
On a personal note, Jean encouraged all of us to follow her lead. She promoted younger people in the field through successful nomination of awards for their work. She befriended new colleagues by inviting them to her home and continued to support and encourage them. Because of Jean Johnson, many others of us have made contributions to EHDI that would not have happened otherwise.
We are pleased to submit this nomination of Lisa Kovacs for the Antonia Brancia Maxon Award for EHDI Excellence. Lisa is the parent of four children, one with hearing loss. For the the past eight years she has worked tirelessly on behalf of children and families throughout Indiana and the United States. Lisa's involvement in Early Hearing Detection and Intervention (EHDI) came about because of less than stellar experiences in the diagnostic and early intervention processes with her own child. Fueled by negative and also, positive experiences, Lisa vowed to help light the path for others, and hasn't let grass grow on the path since then.
Lisa's reputation as a competent advocate for families of children with hearing loss grew quickly. She has provided countless volunteer hours assisting families who have contacted her in their quest to successfully navigate their child and family's journey with hearing loss. Lisa has also been the "go to" parent in Indiana when it comes to special projects. She was asked to develop trainings regarding advocacy and Article 7, Indiana's law as it relates to Part B for families and professionals, has developed family technical assistance materials for the EHDI program, and is a member of Indiana's State Special Education Advisory Committee. Lisa's experiences with individual families and their frustrations with "the system" in her sometimes-compensated-but mostly-not work with About Special Kids, HEAR Indiana and Indiana Hands & Voices (as Board Chair) led Lisa to desire active involvement in "systems change." Since 2008, Lisa has worked from "inside the system" at Indiana's EHDI program in the role of Guide By Your Side (GBYS) Parent Program Coordinator.
Lisa spearheaded the introduction of GBYS to Indiana. She developed an extensive Indiana training manual, a comprehensive Family Guided Notebook (for families' use) and hired and trained Parent Guides across the State in just six months. Through Lisa's leadership and extensive efforts, GBYS is offered to all families of diagnosed children and can be provided regardless of where they live in the state. Since September 2009, Lisa has successfully enrolled more than 100 families into the Indiana Hands & Voices Guide By Your Side program. Because of this success, she was asked in 2010 to become the director of the national GBYS program. Janet DesGeorges, Outreach Director for national Hands & Voices, responded to a request for comment about Lisa, by stating, "Lisa has the ability to maintain the integrity of her perspective as a parent - while at the same time demonstrating a clear understanding and grasp of systemic development needs in EHDI systems. Lisa is a strong advocate for families, and is a leader who models and supports other parent leaders across the nation to be more effective in their roles. Lisa has a strong sense of what is the 'right thing to do', and also a common sense approach to dealing with problems. - a perfect combination."
I would like to nominate Jim Schmaelzle for the Antonia Brancia Maxon Award for EHDI Excellence for 2011. I have known Jim since I was a student in the 1980's and he served as my supervisor. He was one of the professionals who mentored me along my journey to finding my passion for newborn hearing screening and pediatric audiology. When Jim was asked to take on the newborn hearing screening program in 1983, I knew he was the perfect person for the job. Since then I have had the opportunity to work along- side Jim at the Oklahoma State Department of Health as a clinical audiologist in the past and as a collaborative partner in the private sector.
Jim Schmaelzle, known to people in Oklahoma as the "Father of Oklahoma Newborn hearing screening" was instrumental in getting Oklahoma legislation enacted in 1982 which specified that "a screening procedure for the detection of hearing impairments shall be required for all infants". The State Board of Health was given responsibility for developing and administrating hearing screening procedures for infants and in 1983 the Oklahoma State Department of Health established the Oklahoma Newborn Hearing Screening Program (NHSP) under the leadership of Jim Schmaelzle.
Jim's passion has always been working with children with hearing loss as an audiologist and teacher of the deaf. Until his retirement in 2008, he worked tireless hours on this project so close to his heart, coming early in the mornings and staying late in the evenings. In 2000, the legislation was updated, at which time, he developed the Oklahoma Audiology Task Force, which is still in place and is a strong working task force. He also developed an Early Intervention Task Force made up of other providers, teachers of the deaf, early interventionists, otologists etc. because he knew the frontier for hearing health care for babies in the state of Oklahoma was changing and issues needed to be addressed quickly.
Jim worked diligently and was successful in obtaining funding to provide an AABR screener to every birthing hospital in Oklahoma. This was an extensive process that included ordering, assembling, delivering, and training on the devices. He was committed to reaching out to rural areas in Oklahoma and really put Oklahoma on the map for hearing health care for children and hiring audiologists in county health departments with state-of-the-art equipment to provide diagnostic testing for infants and children in these areas. Jim laid the ground work for obtaining hearing screening equipment in county health departments across Oklahoma where access to an audiologist might be limited, and currently we have around 700 pieces of screening equipment for providers to utilize to screen the infants and children and make appropriate referrals for management. This made Oklahoma unique and has been the reason that Oklahoma has really been able to accomplish "1-3-6" goals in weeks and not months.
Jim has been active in our state organizations and has been president of the national Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA) as well. Without the leadership, vision, and passion of Jim Schmaelzle, Oklahoma's newborn hearing screening program would not be where it is today.
When the state of Oklahoma's budget shortfalls for 2010 meant cutting the state's audiologists serving rural communities, The Scholl Center stepped-up. The first of several financial cuts to affect the newborn hearing screening program meant turning to the private sector to satisfy the deficits of a financially overburdened budget. In a state that continually ranks in the bottom five of American reports reflecting the health and poverty status of children, Oklahoma couldn't afford to lose newborn hearing follow-up in rural communities that would set the program back. The efforts of professionals and visionary leadership have made Oklahoma's newborn hearing screening program an exemplary model. It was a heart-wrenching battle at the state level and there was hope the audiology positions would be saved until the very end.
Realizing the importance of rural support and the need to continue important screening and diagnostic services to an underserved and at-risk population, The Scholl Center for Communication Disorders (SCCD) immediately began deliberations with rural northeastern Oklahoma county health departments. In an effort to continue much needed services, SCCD and the state and county health departments combined resources to provide continuation of services. In its first year of rapid growth, SCCD had not anticipated serving rural areas. In a leap of faith, owner and pediatric audiologist, Jacque Scholl, hired the community champion, Joan Burns, M.A., CCC/A, who had served the rural northeastern community of Oklahoma providing newborn hearing screenings and collaboration with early intervention teams to ensure the earliest intervention possible for deaf and hard-of-hearing infants. Joan's passion in serving rural communities was reflected in the increasing numbers of babies being identified with hearing loss through the screening program.
SCCD built its foundation on the premise that providing the earliest intervention possible would ultimately foster literate taxpayers throughout Oklahoma. Emphasizing language, listening, and literacy, SCCD provides age appropriate books to every child being seen for a speech or hearing concern by partnering with FirstBook and Scholastic. Joan goes to rural counties with new, age appropriate books and promotes literacy to families. In addition, the SCCD provides mentorship to students in speech pathology and audiology. Preparing students to reach out to rural communities is one way the SCCD exposes students to the importance of early intervention without borders. Practicum exposure in rural sites prepares the next generation to embrace the need and challenge of finding, diagnosing, and providing the earliest intervention possible for babies all over the state.
SCCD serves as a model of true collaboration and creativity between state and private sectors. Business as usual is changing to reflect the struggles of an economic downturn across the country. SCCD is still collaborating with the state on bringing services to more rural communities and keeping the momentum of the newborn hearing screening program.
The services Joan Burns provides in northeastern Oklahoma have never been interrupted. She goes armed with students and books and is still connecting with families who otherwise would have had nothing.
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