2011 RTOI Projects RTOI Publications
2011-01Improving Early Hearing Detection and Intervention (EHDI) Loss to Follow-up/ Loss to Documentation through Screening at Women, Infants and Children (WIC) Certification Visits
All states have Early Hearing Detection and Intervention (EHDI) programs that help ensure all newborns are screened for hearing loss and infants who fail the screen receive appropriate diagnostic and intervention services. In 2007, hearing screening was documented among over 90 percent of infants born in the United States However, newborn screening is only the first step in the EHDI process. Diagnosis and provision of early intervention services are vital to the care of infants and children with hearing loss. Nonetheless, adequate documentation of timely diagnosis and initiation of effective intervention does not exist for many of these children. In 2007, approximately one half of infants who failed their hearing screening did not have a documented diagnosis reported to their state EHDI program. Additionally, documentation of receiving Part C intervention services (services for infants and toddlers provided by states through the Individuals with Disabilities Education Improvement Act of 2004) existed for only half of infants diagnosed with a hearing loss. These concerning numbers represent infants who might not be receiving appropriate services and are, therefore, at risk for language delays.
Women, Infants and Children (WIC) is a federal grant program administered by the United States Department of Agriculture (USDA) through state health departments. This federal grant program provides funds to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk. WIC operates in 2,000 local agencies at 10,000 clinic sites in 50 State health departments, 34 Indian Tribal Organizations, the District of Columbia, and five territories (Northern Mariana, Samoa, Guam, Puerto Rico and the Virgin Islands). WIC serves approximately 45% of all infants in the United States.
WIC's mission is to be a partner with other services that are key to childhood and family well-being. In addition to providing nutritional supplementation services, WIC plays the role of an adjunct to services that provide immunizations. The WIC Program's role in this capacity is to find out about a child's need for immunizations and share that information with parents, including where to get a child immunized. In 1996, after studies found improved rates of immunization among preschool aged children who received immunization referral linked with food-voucher issuance, CDC and the USDA joined together in recommending that state and local vaccination and WIC programs collaborate to ensure that young children receive immunization assessment and referral services. In 2000, the White House Executive Memorandum was issued directing WIC to screen the immunization records of all infants and children under the age of two at WIC certification visits.
This public health collaboration between CDC and the USDA may serve as a model for establishing a nation-wide program that will reduce EHDI loss to follow-up. However initial studies are needed to determine the effectiveness of food voucher issuance linked to EHDI follow-up assessment and referral.
The purpose of this study is to determine if provision of WIC services in conjunction with EHDI follow-up assessment and referral is associated with improved loss to follow-up/loss to documentation rates. The CDC/EHDI Team is interested in proposals that describe specific details of how EHDI follow-up assessment and referral will be gathered and administered within a WIC setting. The successful applicant must provide documentation of collaboration between the State EHDI program and the State WIC program. Specific WIC clinic sites that will function as a study site must also be identified and the applicant must provide documentation of their agreement to participate. The application must describe a protocol in which individualized (not aggregate) data for both infants who receive EHDI follow-up assessment and referral and infants who do not receive the intervention will be collected. Data collected must include initial screening status, referral, diagnostic evaluation status and status of enrollment in early intervention. The applicant must also have access to State EHDI data which includes items that identify populations at risk for loss to follow up such as type of insurance, race, ethnicity and maternal education.
Read on for evaluation criteria and additional information.
Surveillance of Autism Spectrum Disorders (ASD) in Select Children who Live in Minneapolis: Do Children of Somali Descent Have a Higher ASD Prevalence?
In 2008, Somali parents and others in the Twin Cities area raised concerns about disproportionately high participation rates of Somali children in a preschool program for children receiving Autism Spectrum Disorder (ASD) special education services. The preschool program in which the Somali children were participating was the Early Childhood Special Education (ECSE) Citywide ASD Classroom Program, operated by the Minneapolis Public Schools (MPS). A particular source of concern was the high percentage of children participating in this program who were Somali, compared with the overall percentage of children who were Somali in the city's public schools. In 2009, the Minnesota Department of Health (MDH) shared the community's concerns about a possible elevation in ASD rates in Somali children, and agreed to assess the occurrence of ASD among preschool-age Somali children in Minneapolis.
Children in the MDH analysis were those who participated in the MPS ASD-related special education programs and had a primary, secondary, or tertiary ASD disability. Because it was not possible to link children who were identified using MPS administrative data with their birth certificate data, four different sets of assumptions were used to determine which children should be included in the denominator, based on the birthplace of the child and school district residency of the child. Children in the denominator were counted as Somali if their mothers were born in Somalia. Results found that the administrative ASD prevalence estimates were significantly higher for Somali children compared to non-Somali children across most analysis assumptions, school years, and ASD program types. However, these prevalence ratios decreased markedly over the 3-year period, suggesting that the difference in administrative prevalence between Somali children relative to non-Somali children was decreasing with time. Additional information on 2009 MDH study methods and findings can be found at:http://www.health.state.mn.us/ommh/projects/autism/report090331.pdf.
In October 2010, the Interagency Autism Coordinating Committee (IACC) requested that the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and Autism Speaks support activities to explore the prevalence of ASDs among children in Minneapolis. Thus, the goal of this project is to determine the ASD prevalence among a defined group of children in Minneapolis and whether some children, such as those of Somali decent, have a higher ASD prevalence compared to children from other racial and ethnic groups. Results from this activity are not intended to be generalizable to other populations. The specific Minneapolis population investigated in this project should include at least 10,000 to 15,000 children in order to achieve stable prevalence estimates (assuming 1% ASD prevalence). Applicants should consider ways to define the study population in order to meet this requirement (e.g., varying the geographic area investigated, focusing on children in a range of ages rather than one particular age, or focusing on children of one particular age at time of ASD ascertainment who are from multiple birth years). Applicants should also consider how their methods can compare to surveillance methods used by other U.S. sites who participate in the Autism and Developmental Disabilities Monitoring (ADDM) network, such that the prevalence estimates obtained through this project can be assessed in the context of prevalence estimates from other U.S. populations.
Briefly, the ADDM surveillance methodology is based on screening and abstraction of records at multiple clinic and education sources that provide ASD evaluation services for children within a specified population. When possible, agreements to access records are based on institutional rather than individual consent. Children who have certain International Classification of Disease (ICD) codes or educational exceptionality codes in their records are first screened for demographic eligibility, which is defined by birth year and current residency. For children meeting demographic eligibility, clinic and/or education records are further screened for behavioral or diagnostic ASD-related triggers. If a trigger is identified, the child's records are fully abstracted and then reviewed by a trained clinician using a coding scheme based on the Diagnostic and Statistical Manual for Mental Disorders-IV-Text Revision (DSM-IV-TR) criteria for the ASDs. ASD surveillance case status is based on the results of this coding process. Additional information on ADDM surveillance methods and findings can be found at: http://www.cdc.gov/mmwr/pdf/ss/ss5601.pdf and http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm.
Successful applicants should be able to develop partnerships with clinic and education sources to access service records and the MDH to access birth records for the purpose of public health surveillance. It is expected that this project will be determined a surveillance activity rather than a research activity. A CDC research determination will be forwarded to the grant recipient who can use the determination to examine whether an exempt Internal Review Board (IRB) status can be obtained.
The purpose of this project is to determine the ASD prevalence among a defined group of children in Minneapolis and whether some children, such as Somali children, have a higher ASD prevalence than children of other racial and ethnic groups. The grant recipient is encouraged to consider ADDM surveillance methods for this project. We prefer the project involve a clinical evaluation of a sample of children identified for ASD surveillance to verify final case status. Thus, this project is intended to accomplish the following outcomes:
•· Define a population of Minneapolis children feasible to ascertain ASD prevalence,
•· Estimate the prevalence of ASDs among children in the Minneapolis population,
•· Determine whether Somali children have a higher estimated ASD prevalence than children from other racial and ethnic groups, and
•· Verify final case status in a sample of children identified from ASD surveillance activities.
Read on for evaluation criteria and additional information.