Marion Downs National Center

Surveys for Screening, Assessment
and Intervention Needs

Survey Results || Revised Survey Forms

The results of these surveys, which requested information regarding services offered and populations served, provided a baseline on the status of universal newborn hearing screening, audiological assessment and intervention in states participating in the Maternal Child Health grant at the Marion Downs National Center for Infant Hearing. The survey results also assisted MDNC in identifying issues that must be addressed in order for participating states to achieve the four goals of the Center by the year 2000.

Survey Results and Center Goals

The first goal of MDNC is for participating states to achieve universal newborn hearing screening (a minimum of 85% of births). At the baseline survey, 17% of children born in participating states were born in hospitals with universal newborn hearing screening programs. In addition, within months after the baseline survey, several states have gone from having few universal newborn hearing screening programs to achieving near universal screening.

The second goal of MDNC is for participating states to achieve diagnosis by three months of age and intervention by six months of age. Results of the baseline survey indicate that only 15% of sites report average age of confirmation of hearing loss to be within the first three months of life. Only 13% of sites report fitting of amplification to be within the first six months of life. Finally, only 15% of sites report average age of the start of intervention to be within the first six months of life.

Several factors might contribute to the late confirmation of hearing loss and late start of intervention. First, the survey results indicate a lack of state systems for tracking and reporting which would assist with children successfully transitioning from screening to diagnosis and from diagnosis to intervention. A minority of sites report using computerized systems in screening and many screening sites are unable to report what kind of data management systems they are using. There is also a lack of centralized reporting of confirmed hearing loss. Successful systems for universal newborn hearing screening will depend on data management systems that include specific fields of information (e.g., number of babies screened, number of babies referred, number of babies missed, number of infants returning for follow-up) that are reported to state agencies such as departments of health. Furthermore, a systematic means of reporting infants who are referred from screening may assist in successfully connecting infants and their families from the screening process to diagnostic services.

Second, survey results indicate that there may be a lack of readily obtainable or effective services for both assessment and intervention. Guidelines for diagnosis of hearing loss and fitting of amplification in young infants need to be established to ensure quality pediatric audiology services. Establishing guidelines will likely reduce the lag time presently observed between diagnostic evaluation, confirmation of hearing loss and fitting of amplification. The late start of intervention is a direct result of the lack of early identification. The lack of readily obtainable services and the absence of understanding of the urgent need for early intervention services (Yoshinaga-Itano et al., 1998) also impacts the age at which early intervention starts.

Finally, it is important to acknowledge that the results presented here regarding average ages of diagnostic evaluation, confirmation of hearing loss, fitting of amplification and start of intervention are limited by the fact that they are based on reports from individual sites. The accuracy of the average ages reported by individual sites is difficult for MDNC to verify and may be confounded by incomplete or missing data. This limitation reinforces the need for systems for tracking children from screening through intervention. Only with a centralized system of reporting in each state will it be possible to achieve a truly accurate assessment of whether timely diagnosis and intervention of hearing loss is occurring. A centralized system must include information on the number of infants screened, the number of infants referred, the number and ages of infants tested for hearing loss, the number and ages of infants with confirmed hearing loss, the number of children with different types of hearing loss, the number and ages of infants fit with amplification, and the number and ages of infants enrolled in early intervention services.

The third goal of MDNC is for participating states to document the developmental profiles of infants and toddlers who are deaf or hard of hearing. Documentation of developmental profiles will facilitate the assessment of program efficacy and provide an objective gauge regarding whether changes in service to a child are warranted. The results of this survey indicate a lack of clear definition of intervention services available to infants and toddlers who are deaf or hard of hearing. A comprehensive system must include a mechanism to ensure the competencies of early intervention providers by developing pre-service and in-service training programs. The system must also include a mechanism for monitoring whether children are benefiting from intervention.

The final goal of MDNC is to work with MCH programs in participating states to develop coordinated systems for newborn hearing screening, diagnosis, and early intervention. Only through comprehensive systems will we be able to effectively transition infants from screening through intervention to achieve a positive outcome of normal language development.

In summary, participating states are making progress towards achieving universal newborn hearing screening. However, participating states continue to demonstrate incomplete systems for achievement of timely diagnosis and intervention (i.e., diagnosis by 4 months of age and intervention start by 6 months of age.) Participating states do not have coordinated systems for linking universal newborn hearing screening programs to diagnosis and diagnostic programs to intervention. Key issues impeding establishment of statewide systems for linking screening programs to diagnosis and intervention include a lack of tracking and reporting systems as well as a lack of information about availability of, quality of, and connections between services.

The survey results reported here provide participants in the MDNC/MCHB grant important baseline information regarding existing programs and services in their states. Participating states will carry out on-going assessments in order to monitor progress and determine needs. Based on the results of the baseline survey, MDNC has revised and expanded the screening, assessment and intervention surveys. The revised surveys include questions about processes within each service and about links between services. In this way, states will be able to identify strengths and weaknesses regarding connections within and between services. For example, the revised surveys contain questions that will provide specific information regarding why there are lag times within the assessment process (e.g., between initial diagnostic evaluation and confirmation of hearing loss) and between screening and assessment and between assessment and intervention.

Revised Survey Forms

States are now using these revised surveys to conduct another needs assessment. This second needs assessment will allow states to document changes that have occurred and to document connections that exist (or do not exist) between screening programs and diagnostic audiology services and between diagnostic audiology services and early intervention programs. Finally, Needs Assessment II will provide the statistics states will need to respond to the MCHB objective on universal newborn hearing screening.  

• The Screening Survey is sent to all birthing centers in a state. Also included is a sample cover letter to be sent to screening sites.

• The Intervention Survey  is sent to all intervention sites providing services to deaf and hard of hearing children birth - 36 months in a state. Also included is a sample cover letter to be sent to intervention sites.

1998 Marion Downs National Center for Infant Hearing