This document provides an overview of the federal initiative for

WEBINAR SUMMARY Preview of the Survey of Well-being of Young Children January 2014 Early Learning Challenge Technical Assistance This document provides an overview of the federal initiative for developmental and behavioral screening and support, as well as an introduction to the Survey of Well-being of Young Children (SWYC). OVERVIEW OF THE FEDERAL DEVELOPMENTAL AND BEHAVIORAL SCREENING INITIATIVE The American Academy of Pediatrics recommends the screening of all children for developmental, behavioral, and social delays at 9, 18, and 24 or 30 months. However, less than half of pediatricians regularly use valid and reliable screening tools. Children who have developmental delays are at greater risk for later emotional and behavioral problems and poor educational achievement. According to the National Survey for Children s Health, 1 in 4 children aged 0 to 5 years are at moderate to high risk for developmental, behavioral, or social delays. Primary care providers, educators, and many others who touch children s lives should play a role in supporting healthy development and in identifying delays early. Making sure that all young children are screened and given support early is an important priority of the U.S. Departments of Health and Human Services and Education. Public awareness of child development and the importance of families is critical in this effort. Screening early is important not only in helping to identify developmental delays, but also in celebrating the milestones in each child s developmental trajectory. The following partners across the Departments of Health and Human Services (HHS) and Education (ED) came together to develop a crosssystems developmental and screening initiative: Administration for Children and Families Administration for Community Living Centers for Disease Control and Prevention Centers for Medicare and Medicaid Services Health Resources and Services Administration National Institute for Child Health and Human Development Substance Abuse and Mental Health Services Administration Office of Special Education Programs, Department of Education The initiative consists of three parts, as described on the next page. This ELC TA resource is based on a webinar held on January 29, 2014, sponsored by ELC TA. Webinar Presenters: Katherine Beckmann Senior Policy Advisor for Early Childhood Health and Development, Office of the Deputy Assistant Secretary and Interdepartmental Liaison for Early Childhood, Administration for Children and Families, U.S. Department of Health and Human Services Ellen C. Perrin Director of Research, Division of Developmental-Behavioral Pediatrics, Floating Hospital, Tufts Medical Center R. Chris Sheldrick Division of Developmental-Behavioral Pediatrics, Floating Hospital, Tufts Medical Center Moderator: Kathy R. Thornburg ELC TA Specialist The Early Learning Challenge Technical Assistance (ELC TA) program is run through a contract from the U.S. Department of Education in partnership with the U.S. Department of Health and Human Services Administration for Children and Families. The content in this resource does not necessarily reflect the position or policy of the U.S. Department of Education or the U.S. Department of Health and Human Services, nor does mention or visual representation of trade names, commercial products, or organizations imply endorsement by the federal government. The ELC TA Program provides and facilitates responsive, timely, and high-quality technical assistance that supports each Race to the Top Early Learning Challenge (RTT-ELC) grantee s implementation of its RTT-ELC projects. ELC TA is administered by AEM Corp. in partnership with ICF International. For more information, visit https://elc.grads360.org

HHS ED DEvElopmEntal and BEHavioral ScrEEning initiative goals part 1: public campaign A coordinated public campaign, Birth to 5: Watch Me Thrive!, will promote awareness of child development and of developmental and behavioral screening, referral, and follow-up. We will create an online toolkit that contains 1. a compendium of screening instruments that meet specific validity and reliability criteria; 2. companion guides to assist in selecting screening instruments, designed for providers who care for young children from multiple sectors as well as the communities in which they live; and 3. a collection of resources to bring awareness and support to parents and providers about typical and atypical child development. The Birth to 5: Watch Me Thrive! campaign will launch in the spring of 2014. Look for it at www.hhs.gov/watchmethrive. part 2: SErving children and FamiliES not YEt SErvED A range of interventions and prevention strategies will support children and families where there are developmental concerns, but who are not eligible for early intervention; do not have access to adequate or appropriate services; or have yet to be evaluated and receive appropriate services. part 3: DEvEloping a FrEE ScrEEning tool Public and private partners will validate a developmental and behavioral screening tool for use in the public domain. Offering a cost-free tool will encourage its use and be a system unifier. The screening tool being developed for use in the public domain (as described in part 3) is the Survey of Well-being of Young Children (SWYC). This survey has been validated only in primary care practices, but there is potential for its validation in nonclinical settings. A group led by the Children s Services Council of Palm Beach County in Florida, and also including Alameda County and Orange County in California, as well as Miami-Dade County in Florida, is working to create an electronic version of the SWYC that interfaces with multiple data systems, to create a technical manual, and to eventually conduct a validation study across multiple settings in multiple languages. There may be opportunities for additional regions to partner in this initiative. PREVIEW OF THE SURVEY OF WELL-BEING OF YOUNG CHILDREN (SWYC) About 15 20 percent of children have emotional and/or developmental disabilities, and the prevalence is higher among children born prematurely, in poverty, or with a chronic health condition. The reported prevalence of disabilities among children is increasing. There is also increasing awareness about conditions such as ADHD, autism, and depression and anxiety, as well as about social risk factors. There is growing evidence that early interventions help. As a result, there has been an increasing focus by many stakeholders on the early identification of concerns about children s development and mental 2 Preview of the Survey of Well-being of Young Children, January 2014

Figure 1. Percentage of pediatricians conducting regular screenings, nationwide and in Massachusetts health. This leads to the recognition that early, evidence-based screening can identify more children with emotional and developmental disabilities, and appropriate treatment can be offered to the families of these children. Only about half (47 percent) of pediatricians nationwide reported conducting regular screenings in 2012, although that is significantly more than were conducting regular screenings in 2002 (only 23 percent). In Massachusetts, the number of pediatricians conducting regular screenings jumped from 15 to 70 percent in only a few years as the result of a court case that caused screening to be mandated and paid for within the state. Hence, increased frequency of screening is indeed possible and has been occurring at various rates nationwide (see figure 1). Screening Options Developmental and behavioral screenings can be conducted in different ways. Screeners can be administered by a clinician or through a parent report. (It is often more efficient if the parent is able to complete the screening.) Screening instruments can be on paper or electronic; if they are electronic, they can be accessed through the Internet, on a computer kiosk, on a tablet, or by phone. A few years ago, the group of partners had some concerns about the screening instruments available for use with children under 5 years old. A primary concern was that most screeners focused on only one area, such as cognitive, language, and motor development; social/emotional well-being; psychosocial challenges; or parental depression. However, the partners understood that all these areas are inextricably interconnected. In addition to the concern about screening instruments not being comprehensive, the group of partners was also concerned that most screeners were proprietary and thus not only limited in adaptability, but also cost prohibitive for many providers; that many of the screeners were not validated, feasible in pediatric offices, or tested for longitudinal use; and that many screeners required props or follow-up visits that made them difficult to implement. Many organizations and initiatives have placed a strong focus on children s development and mental health. Only a few of these are listed here. Centers for Disease Control American Academy of Pediatrics Task Force on the Family Mental Health Task Force Practice Guidelines (ADHD, Autism) American Academy of Child and Adolescent Psychiatry Numerous state initiatives for screening Preview of the Survey of Well-being of Young Children, January 2014 3

Commonly used screening instruments are listed in figure 2, along with their features. Notice how few of the screeners cover both behavior and development, and how few are free. Commonly Used Screeners Ages and Stages Questionnaire (ASQ) 4 60 a a Batelle Developmental Inventory Screening Tool (BDI-ST) 0 60 a Bayley Infant Neurodevelopmental Screen (BINS) 3 24 a a Brigance Screens-II 0 60 a Child Development Inventory 18 60 a a Child Development Review-Parent Questionnaire (CDR-PQ) 18 60 a a Denver-II Developmental Screening Test 0 60 a Infant Development Inventory 0 18 a a a Parents Evaluation of Developmental Status (PEDS) 0 60 a a a a Ages and Stages Questionnaire-Social/Emotional (ASQ-SE) 3 60 a a Brief Infant-Toddler Social and Emotional Assessment (BITSEA) 12 36 a a Child Behavior Checklist (CBCL) 18 60 a a Modified Checklist for Autism in Toddlers (MCHAT) 16 48 a a a a Pediatric Symptom Checklist (PSC) 48 60 a a a a Strengths & Difficulties Questionnaire (SDQ) 36 60 a a a a Survey of Well-being of Young Children (SWYC) 0 60 a a a a a a Figure 2. Commonly used screeners and their features Child Age (Months) Free Parent Report <15 Minutes Behavior Development Risk Factors The Survey of Well-being of Young Children The group of partners set about to create what is now called the Survey of Well-being of Young Children (SWYC, affectionately pronounced swick; see figure 3 on the next page). They established several goals for the SWYC, including that the screener would be a screening/surveillance instrument with strong validation and a longitudinal growth curve that would provide a systematic look at children and document their development; sensitive to cultural differences and could be varied for different cultural groups; brief; easy to access, administer, and score; free and in the public domain; an integrated assessment of development, autism, behavior, and family risks; and amenable to an electronic format. The screening instrument integrates three main areas: development, behavior, and family context. In the area of development, the SWYC uses milestones to assess cognitive, language, and motor development. Also in the area of development, the SWYC tests for autism through a brief measure called the Parent s Observations of Social Interactions (POSI). In the area of behavior, the SWYC 4 Preview of the Survey of Well-being of Young Children, January 2014

incorporates the Baby Pediatric Symptom Checklist (BPSC) for children up to 18 months, and the Preschool Pediatric Symptom Checklist (PPSC) for children 18 months to 5 years. (These are modeled after a screener in the public domain, the Pediatric Symptom Checklist, that is commonly used with children ages 4 or 5 and up.) In the area of family context, the SWYC measures parental depression, parental substance use and abuse, parental discord, and hunger. To create items, the group of partners wrote and adapted more than 300 questions based on previously validated screening tests and expert opinions. Next, they obtained responses from more than 1,500 parents of children ages 2 months to 5 years. Finally, they chose the best-discriminating items based on statistical analyses of responses. An exception to this is the area of family risk, for which they borrowed items from previously validated screening questionnaires. The group of partners ended up with 12 forms, one for each age on the pediatric periodicity schedule (months 2, 4, 6, 9, 12, 15, 18, 24, 30, 36, 48, and 60). Each of the forms is two pages long, to fit on two sides of one sheet of paper. To view the SWYC forms, visit www.theswyc.org and click Age- Specific Forms. Preliminary validation studies show that the milestones section (within the developmental area) of the SWYC has good sensitivity and specificity for most forms, and there is consistent association with the Ages and Stages Questionnaire, Third Edition (ASQ-3) across forms. The autism section (also within the developmental area) of the SWYC has good numbers in regard to Cronbach s alpha, sensitivity, and specificity. The behavioral area of the SWYC has good validity and reliability in terms of Cronbach s alpha, retest reliability, and comparison to the ASQ: Social-Emotional. The questions in the area of family context were already validated. In summary, the SWYC offers a brief (10 15 minute) surveillance of the well-being of young children that is accurate (in sensitivity and specificity) compared to longer screening instruments; comprehensive in assessing cognitive, motor, language, and socialemotional development, as well as risk factors; amenable to electronic format; and freely available in English and Spanish (validation of Spanish items is ongoing). Behavior Development Family Context Figure 3. The logo of the SWYC, showing the integration of development, behavior, and family context Ongoing Work in Developing and Implementing the SWYC Projects are underway to enhance the SWYC for use in a variety of settings. With assistance from a Research Project Grant (RO1) from the National Institute of Child Health and Human Development (NICHD), the group of partners is studying longitudinal use, validation between the SWYC and a gold standard assessment, and comparative effectiveness with other screening instruments. Another project is translation of the SWYC for other languages and cultures. The group of partners is studying how the Preview of the Survey of Well-being of Young Children, January 2014 5

SWYC might be used or adapted to promote tribal health, pursuing validation for Spanish-speaking and African immigrants, and working on a translation into Brazilian Portuguese. Another project aims to offer the SWYC electronically through systems such as CHADIS, Epic, and NextGen, as well as in stand-alone versions. A large and nationally representative normative sample will be sought with additional funding. Using the SWYC is only part of the overall process of improving child health outcomes. In implementing the instrument in new and diverse settings and in working to provide identification of children with disabilities as well as access to appropriate treatments, many considerations arise, including the following: If the screening result comes out positive, is any additional screening or evaluation needed? If so, what? What treatment resources are available? How will children and families be linked to these treatment resources? How will staff be trained to interpret the results? How will they be trained to give feedback to parents without raising undue alarm, while also encouraging parents to take the next step? Is the SWYC both the results obtained and the questions on the forms considered to be acceptable, inoffensive, and worth the time spent on it by the client/patient population? The SWYC could be adapted in different ways for different settings. For instance, some SWYC forms could be shortened for some populations, if appropriate. Another consideration is whether the thresholds recommended (for establishing that a child is within an acceptable range of well-being) are appropriate. The group of partners would also like to develop local and national norms. Then, clinicians could take into consideration the local norms for their area, as well as the norms for the entire country, when making recommendations to families. The SWYC could also be adapted for nonclinical settings, such as child care centers, preschools, and home visiting programs. RESOURCES Additional resources are available at the website for the SWYC, www.theswyc.org. 6 Preview of the Survey of Well-being of Young Children, January 2014