Communication and cooperation among audiologists and speech-language pathologists is pivotal to the success of statewide programs for early hearing detection and intervention (EHDI). Clinicians in North Carolina have forged successful collaborations since the 1999 implementation of universal newborn hearing screening; statewide EHDI programs work in partnership with audiologists and SLPs at several institutions, including the University of North Carolina (UNC) at Chapel Hill, to serve children with hearing loss and their families.
Professional Roles and Responsibilities
The essential roles and responsibilities of audiologists and speech-language pathologists were reaffirmed recently by the Joint Committee on Infant Hearing (JCIH), Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs (JCIH, 2007). The role of the audiologist, according to the position statement, includes management of newborn hearing-screening programs; quality assessment; service coordination; and audiological diagnosis and treatment, including the timely fitting and monitoring of amplification and other sensory devices.
SLPs, according to the position statement, are among the specialists who provide early intervention services to young children with hearing loss and who, by virtue of their professional qualifications, can provide appropriate assessment of language, speech, and cognitive-communication development, as well as offer their expertise in auditory skill development. The position statement recommends a global screening of developmental milestones for all infants and young children, provided in/by the family's "medical home" in accordance with the schedule recommended by the American Academy of Pediatrics, and further recommends immediate referral to an SLP for further evaluation if there is evidence of delays in speech, language, or communication development.
Diagnosis and Audiologic Management
Infants referred from newborn hearing screening require prompt diagnostic assessment and timely follow-up. The specialized audiology and otology services needed by infants are often provided most efficiently and competently within a comprehensive medical center. North Carolina's primary state-supported medical center, University of North Carolina Hospitals (UNCH), comprise the inpatient and outpatient clinical programs of UNC's School of Medicine, and are among several centers in North Carolina that serve the state's 9 million residents in 100 counties. The pediatric audiology program at UNCH, like many across the nation, has grown substantially since the advent of newborn hearing screening. ABR diagnostic assessments, for example, have increased from two to three per month in 1999 when newborn hearing screening was implemented, to an average of nearly 30 per month in 2007. Physiologic assessments now are performed routinely with infants in natural sleep, conscious sedation, and when necessary, under general anesthesia. For infants without health complications and whose families concur, the average age of diagnosis is approximately 3 months of age. Initial hearing aid fitting, accomplished using real-ear-to-coupler-difference (RECD) measures, is usually completed within two weeks. Infants are then followed every four to six weeks to monitor hearing aid use, check earmolds and provide re-makes as needed, and monitor middle-ear status. Once infants reach a developmental level of approximately 6 months, physiologic tests are supplemented by behavioral measures using visual reinforcement audiometry and eventually play audiometry. Aided speech perception measures are completed as soon as children have the requisite language skills.
Acoustic amplification alone is not sufficient for some children. UNC's Carolina Children's Communicative Disorders Program (CCCDP) provides cochlear implantation evaluation and mapping and an auditory-oral preschool where comprehensive assessment and intervention services, including auditory-verbal therapy, are provided by SLPs and other early intervention specialists. The close working relationship between the UNCH pediatric audiology program and the CCCDP, which together follow more than 1,200 children who are deaf or hard of hearing, makes it possible for the audiologists, SLPs, otolaryngologists, and intervention specialists to participate in weekly team meetings to monitor children's progress and ensure the availability of the most beneficial hearing technology.
Even the most comprehensive clinical services are not sufficient to provide the support needed by most families when hearing loss is first identified. Much of the recent success in North Carolina is attributable to partnerships among EHDI-related agencies within the state. One such agency, Beginnings for Parents of Children who are Deaf or Hard of Hearing, Inc., has provided a vital link between the hospital and early intervention programs for more than 20 years. Beginnings provides emotional support, information, and technical assistance to families in the state whose children are deaf or hard of hearing, from birth through age 21.
Beginnings was established in 1987 as an independent, nonprofit agency by a group of parents who wanted to ensure that families receive accurate, unbiased information about communication and educational options at the time of diagnosis. When a child in North Carolina is diagnosed with a hearing loss, parents are informed about Beginnings and invited to talk with one of the agency's parent educators, who provide support and guidance.
Parent educators meet with families at a convenient time and place, usually at their home, to make sure parents understand their child's hearing loss and to provide information regarding financial assistance, language development, communication options, and early intervention services. The parent educators emphasize the importance of keeping appointments with the audiologist and other service providers, help with arranging transportation if needed, and assist the family with enrollment in the statewide early intervention program. An SLP on the Beginnings staff serves as a consultant to parent educators, allowing them to provide more in-depth support in the development of communication, language, and speech.
The Beginnings model is now being replicated in several other states—in 2004, Beginnings formed a partnership with Utah's National Center for Hearing Assessment and Management as part of a federally funded outreach project to provide technical assistance to state EHDI programs as they develop family support services. Four states are working to develop programs similar to Beginnings and 10 others have requested assistance as they explore family support options.
Early Intervention Services
In North Carolina (as in most states), Part C services [of the Individuals With Disabilities Education Act (IDEA)] are administered by the Division of Public Health (DPH) in the Department of Health and Human Services. The JCIH 2007 position statement recommends a central referral point of entry to ensure specialty services for infants with confirmed hearing loss. North Carolina's statewide system of 18 regional Children's Developmental Services Agencies (CDSA) provides a portal of entry into the state's Infant-Toddler Program. At the CDSA, children receive evaluation services and their eligibility is determined; those deemed eligible are assigned a service coordinator, who is responsible for developing the Individualized Family Service Plan (IFSP), which defines family and child goals and the services needed to achieve these goals. The service coordinator is also responsible for making sure that the IFSP is reviewed and modified, as needed, every six months.
Once enrolled through the CDSA and assigned a service coordinator, infants and toddlers who are deaf or hard of hearing are also eligible to receive services through the Office of Education Services' (OES) early intervention component. This component provides direct, specialized services to children and their families. Three regional OES directors manage the program at the local level, supervising a team of licensed teachers of the deaf who, in turn, provide direct services to children and families. Each region also employs an SLP with expertise in auditory-verbal therapy, cued speech, sign language, and the diagnosis and treatment of a variety of co-existing speech and language disorders.
OES SLPs play a key role in following the Joint Committee's recommendation to assess all children with hearing loss at six-month intervals during the first three years of life using instruments designed to assess progress in verbal and visual language. These SLPs participate as members of a statewide team to identify appropriate measures, develop and monitor testing protocols, train teachers and other early intervention specialists, and assist in the interpretation of results, report writing, and sharing information with families.
In accordance with IDEA Part C, services are provided in natural environments—at home or in a day care center. Most children receive at least one home visit per week from either the teacher of the deaf or the program's SLP; efforts are made to schedule visits at times that are convenient for the family.
A primary goal of the program is to maximize the involvement of parents and other family members. During parent sessions, teachers and clinicians respond to questions and concerns from the family, review the child's progress, identify goals, model strategies and techniques, and guide parents as they practice effective strategies. Teachers and clinicians also assist caregivers in identifying appropriate ways to carry over goals during the course of daily routines. Through this process parents understand their role as primary teachers and the importance of daily interactions in achieving desired outcomes.
An important strength, and one that is consistent with the recommendations of the 2007 JCIH position statement, is that all professionals are specialists rather than generalists. Furthermore, every effort is made to enroll children and begin intervention immediately following referral. It is noteworthy that at no time in the referral process is a child placed on a waiting list.
Audiology and Speech-Language Consultants
North Carolina is fortunate to have the services of regional audiology and speech-language consultants employed by the DPH. Five child health audiology consultants (CHACs) cover the entire state to provide a variety of services, including tracking of infants referred from newborn screening, monitoring hospital compliance with screening protocols, and providing in-service training for screening personnel, technical assistance regarding newborn screening, and direct audiological support to children and families for such needs as hearing aid use and environmental acoustics. These regional audiologists consult with families of newly identified children through home visits to provide information regarding hearing loss, interpretation of audiological tests and results, auditory potential, current and future goals, and expectations for parent participation. The CHAC also facilitates repair services for malfunctioning equipment and acquisition of new earmolds.
Six child health speech-language consultants work with the audiology team to assure initial and/or follow-up hearing screenings for infants who did not receive physiologic hearing screening prior to discharge from a birthing facility and/or who were referred on their initial newborn hearing screening. Consultants also assist families with applications for assistive technology and enrollment in children's special health services.
Educating Parents and Professionals
Each year EHDI programs in North Carolina collaborate to plan and deliver a statewide conference on topics relevant to early identification, assessment, and intervention. UNC hosts a biannual pediatric audiology symposium in Chapel Hill that brings together pediatric audiologists, SLPs, and other professionals from across the state to examine topics including physiologic and behavioral assessment of infants; pediatric hearing aid fitting; and audiologic management of special populations such as infants with neural conduction disorders or unilateral hearing loss. The meeting also provides an opportunity for EHDI staff to share updates and information.
On alternate years a two-day statewide EHDI conference provides content to a broader audience including parents, early intervention professionals, administrators, physicians, audiologists, and SLPs. An annual workshop co-sponsored by CCCPP and the state's chapter of the Alexander Graham Bell Association provides continuing education for SLPs and early intervention specialists. All three conferences have been well-attended and highly rated by attendees. Public and private funding have made it possible to deliver the meetings at an affordable cost to attendees.
Despite efforts to develop a well-integrated and collaborative team approach, many challenges remain. Appropriate management of young infants is time-consuming and expensive. In addition to specialized instrumentation and clinical expertise, institutional support is needed to manage the financial burden associated with providing comprehensive care when reimbursement is insufficient to cover all costs. In North Carolina, as in many states, only a few centers have the expertise and institutional support needed to provide specialized care of infants. Consequently, some families must travel considerable distances to obtain services and, inevitably, some are unable to access services because of logistical challenges and expenses associated with transportation and follow-up. The difficulties have been especially acute for low-income rural families and those whose first language is not English.
Families also face other financial pressures. Although state funding for hearing aids, FM, repairs, and earmolds is adequately covered for children younger than 3 years of age, financial assistance for replacement of hearing aids is limited to families who meet eligibility criteria. Given the high cost of hearing instruments, even a family with a relatively good income may be burdened by the cost of replacing hearing aids. For children served under the Medicaid program, hearing aids and related technology are often difficult to obtain from practices that do not bill Medicaid for services and hearing instruments.
Challenges facing audiologists include the decision about when to offer cochlear implantation, especially when hearing aid use is providing some benefit. Clinical evidence is still accumulating on the issue of bilateral and "bi-modal" (cochlear implant on one side and hearing aid on the other) and the management of mild hearing loss, unilateral hearing loss, and neural conduction disorders (auditory neuropathy/dys-synchrony). There are also challenges in the delivery of services to children who present with various conditions that co-occur with hearing loss. Syndromes, developmental disabilities, and a variety of health conditions require well- coordinated, multi-disciplinary collaboration.
North Carolina, like many other states, has a large African-American population (21.8%) and a rapidly growing Hispanic/Latino population (6.4%). In contrast, the workforce of the state's service providers is primarily white, female, and English-speaking. Audiologists, SLPs, teachers, and other service providers from diverse backgrounds, those who speak more than one language, and those educated in practices designed to meet the needs of economically disadvantaged children and families are needed to enhance the effectiveness of family-centered intervention. Similarly, graduate programs are challenged to recruit and retain well-qualified students and faculty from varied racial-ethnic backgrounds.
A Vital Role
Audiologists and SLPs play a vital role in early identification, diagnosis, and intervention for young children with hearing loss and their families. They constitute essential members of a professional team that seeks to deliver services that are accessible, well-coordinated, and appropriately funded. North Carolina faces challenges related to serving children with health conditions or disabilities that exist in addition to hearing loss; a growing number of non-English speaking families; a limited number of programs that bill Medicaid for hearing instruments; and a shortage of early intervention providers with the expertise and communication skills needed to serve these special populations. For all families, the transition from early intervention at age 3 to the local school system is an important one, and for many a time of apprehension and uncertainty. But despite these challenges, progress continues through advances in technology combined with the dedicated efforts of audiologists, SLPs, and other service providers committed to parent-professional collaboration and comprehensive EHDI services.