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AUCD LOI #: UCD RTOI 2008-999-01 Developmental Outcome Feasibility Study: Deaf/Hard of Hearing NECAP: National Early Childhood Assessment Project – D/HH
ABSTRACT Early hearing detection and intervention programs were designed to assure that all infants born in the United States have access to hearing screening within the first month of life to provide an opportunity for infants with hearing loss to develop age and cognitively appropriate communication skills. There is great urgency to develop systems that can assure that infants with hearing loss are enrolled in appropriate early intervention services before six months of age. The probability of successful development drops from 80% to 35% with later identification of hearing loss and later enrollment in appropriate early intervention services. As with all quality health initiatives, the quality of the intervention is paramount. In order to monitor and assure quality services, ongoing developmental assessment must be conducted. Despite the fact that screening began 16 years ago, and that almost all of the 4 million babies born annually in the United States are being screened for hearing in the first month of life, only one state can provide data that demonstrates the effectiveness of the hearing screening programs. This project will conduct a feasibility study to provide technical assistance to a minimum of 5 states to develop data management systems that are capable of collecting and reporting developmental outcomes of infants/children identified through the hearing screening programs. The project will assist in forging collaborative relationships within states and territories with state health departments, state education departments, educational systems for deaf and hard-of-hearing children, public and private early intervention programs, and parent organizations to help assure the collection and reporting of developmental outcomes of individual infants identified with hearing loss. The project will rely upon the acceptance of a minimum of two standardized developmental assessments that will be used with as many families with identified children as possible. Data about early intervention follow-through, characteristics of the intervention services, demographics of the enrolled population, and developmental outcomes will be analyzed and reported annually by state/territory and across all participating states/territories. The goal of EHDI programs is to prevent the negative effects of congenital hearing loss upon the communication and social-emotional development of infants/children.
Specific Aims The primary aim of this project is to determine the feasibility of establishing systems within states/territories capable of reporting comprehensive developmental outcome data on the infants/children followed from universal newborn hearing screening programs to a national database. The study will quantify and describe successful models for the collection of statewide developmental outcome data on the state’s population of infants/children who are deaf or hard of hearing. In addition, it will characterize the language abilities of children with hearing loss from a national perspective and identify factors that lead to more successful language outcomes.
Project Justification Severe delays in the acquisition of speech and language have been consistently documented in deaf children. These language delays are apparent early in life and are directly related to significant later limitations in reading and writing. The severe limitations that most deaf individuals face when reading, in turn, have a profound impact on their ability to learn during the school years and throughout their life. Universal newborn hearing screening has increased dramatically the number of infants identified with hearing loss within the first few months of life and has reduced the age at which intervention services are initiated. This provides an excellent opportunity to raise the language levels of children who are deaf or hard of hearing, potentially closing the gap between children with hearing loss and their hearing peers by the time of school entry. A data-driven approach to early intervention will assist in achieving the goal of maximizing the language abilities of children with hearing loss. This is accomplished through regular and consistent assessment of all children within an intervention program. The aggregate results of this assessment can be used to evaluate the intervention program as a whole, guide program development, and inform professional preparation needs. The results for individual children allow parents and interventionists to monitor a child’s progress over time and identify potential delays at their onset. Additionally, results from the assessment data can be used to generate IFSP/IEP goals and to provide a data-driven approach to educational programming decisions. The use of a standard, nationwide assessment battery, provides significant benefits to the field of deafness in addition to the general benefits of regular assessment described above. By using a common set of assessment tools, states can contribute to a national outcomes database that will provide much-needed data on the progress of a large group of young children who are deaf or hard of hearing with varying characteristics. This database will allow us to characterize the language strengths and weaknesses of children with hearing loss and identify factors that are predictive of more successful language outcomes. The identification of key variables that lead to better (or poorer) outcomes for young deaf and hard-of-hearing children will allow early intervention and preschool programs to identify children that may be at risk for significant delays in speech and/or language. In addition, it will assist intervention and educational programs in designing curriculums that will maximize the success of all deaf and hard-of-hearing children. Eligible Participants All children with permanent hearing loss are eligible to participate. Children whose loss is not permanent (e.g., cases where the hearing loss is solely a result of otitis media) are not eligible. Eligible children may have:
Testing Schedule If a program does not have a specific preference regarding the testing schedule, the following test ages (plus or minus one month) are recommended:
Testing Procedure At each assessment, parents will complete several developmental questionnaires regarding their child’s language and general developmental skills. These questionnaires are described in more detail in the section below. Completion of the questionnaires requires approximately 1 to 2 hours of the parent’s time. Typically, the questionnaires are given to the family by their interventionist at a regularly scheduled visit. The interventionist reviews the instructions for completing the questionnaires with the family and answers any questions they might have. They inform the family that they will collect the completed questionnaires at the next scheduled visit. When the interventionist retrieves the questionnaires from the family, it is critical that they review all of the forms for completeness and accuracy. Incomplete forms can not be scored, and inaccurately completed forms are of no value to the family, provider, or national database. If the interventionist disagrees with the family’s assessment of the child’s abilities, this is an excellent clinical opportunity to provide education to the family about observation of their child’s skills. The interventionist, preferably with input from the family, should complete any missing items and make corrections to the responses as needed. Completed assessment protocols should be sent to Dr. Allison Sedey at the University of Colorado at Boulder for scoring and input into the national outcomes database. Dr. Sedey will generate a report of the results and return these to the child’s early intervention provider. It is the responsibility of the interventionist to share the report with the family and/or other professionals as determined by each individual program. Results from the report can be used to identify potential delays and track individual children’s progress over time. It may also be useful to the provider in establishing goals and/or making other programming decisions. Cost and Benefits The cost for this service will be $50 per child per assessment packet. If a provider chooses to complete the Play Assessment Questionnaire in addition to the standard set of protocols, the total cost will be $95 per assessment. The fee for the assessment includes the following services:
Description of Questionnaires Minnesota Child Development Inventory: This instrument assesses the child’s development in nine domains. They are: social, self help, gross motor, fine motor, expressive language, language comprehension, letters, numbers, and situational comprehension. Parents circle “yes” or “no” to a series of statements describing different skills. Developmental age scores are derived for each of the subscales. These are plotted on a profile graph relative to the child’s chronological age so that areas of strength and weakness can be seen easily. MacArthur Communicative Inventories: There are three inventories in this series. Only one is completed at a given age based on the child’s estimated vocabulary size. All three of the inventories assess a child’s use of vocabulary. Parents check off words that their child produces in speech and/or sign. Depending on the inventory selected, additional skills may be measured including vocabulary comprehension, grammar, and cognitive-linguistic abilities. For each area that is assessed an age score is calculated and presented on a single summary sheet. - Demographic Information Form: This form is used to obtain information about the child’s hearing loss (age of identification, age of onset, etc.), any other disabilities the child may have, the type of communication used with the child (sign language, spoken language only, etc.), and the type and amount of intervention the child receives. - Audiologic Release Form: This form will be used so that audiologic records can be obtained for each participant from whatever facility they go to for hearing testing. In lieu of this form, interventionists/families may provide a recent unaided audiogram and/or the results of ABR testing. - Consent form: This form requests the parents’ permission for including their child’s results in the national database. - Play Assessment Questionnaire: This assessment is optional, and scoring of this protocol increases the cost of the evaluation from $75 to $95. The Play Assessment Questionnaire lists a variety of play and play-related behaviors demonstrated by children from 1 month to 3 years of age. Parents indicate which behaviors they have observed in their child. A developmental age score is calculated based on behaviors a child can do independently as well as a score for what he/she is able to accomplish with adult assistance. These scores are highly correlated with cognitive ability, thus the results of the assessment can give an indication of a child’s non-verbal cognitive level. The items on the questionnaire are arranged in a developmental hierarchy, thus it is often useful to interventionists and parents in identifying symbolic play goals for individual children. Training Optional in-service training will be provided on request. The cost of this training is $1,500 for a single day which includes transportation, lodging, food, and trainer stipend. For each additional day of training within the same visit, the cost is $800. A series of three, one to two day trainings over the course of a year are recommended. These would include: 1. Description of the assessment instruments, instructions for test administration, understanding the assessment results, and logistics for disseminating and completing the assessments 2. Interpreting the results of the assessment and using the results to establish goals, make programming decisions, and guide intervention 3. A follow-up on the training described above after interventionists have had approximately 6 months of experience administering the assessment instruments and receiving the results
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