Developmental Monitoring, Screening and Referral

Page 1 PART C ADMINISTRATOR IMPLEMENTATION TECHNICAL ASSISTANCE GUIDE DEVELOPMENTAL MONITORING, SCREENING, AND REFERRAL INTRODUCTION The Individuals with Disabilities Education Act (IDEA) requires State Part C lead agencies to have a comprehensive child find system. The child find system must have referral procedures in place so that parents ; health care providers, such as pediatricians ; social services agencies ; early childhood educators ; and other individuals can refer children to IDEA Part C if there are concerns about their development . As part of their work with young children, these providers and programs regularly use developmental monitoring and conduct developmental screenings to assess if children are meeting developmental milestones . They therefore are key partners in working with IDEA Part C programs to identify infants and toddlers who may have disabilities or delays in development, and then connecting families to IDEA Part C for further assessment . 1 IDEA PART C STATUTORY AND REGULATORY KEY PRINCIPLES • Comprehensive child find system • Early and appropriate identification of all eligible children, including from underserved groups • Coordination among agencies and early childhood programs • Outreach to and engagement with families and primary referral sources • Promoting development, learning, and school readiness IDEA sections 632, 634, 635(a)(1)-(8 ), 636(a), and 637(a)(3)-(7) and 34 C.F.R. Part 303. Second level DEVELOPMENTAL MONITORING Physicians, other health care providers, and early childhood educators regularly use developmental monitoring, an informal practice of observing young children’s development and listening to families’ concerns about their children’s development, to see how children are meeting developmental milestones . Developmental monitoring does not require standardized tools, but those conducting the observations should be knowledgeable about childhood milestones and how to identify a child not reaching those milestones . The American Academy of Pediatrics’ Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents offers an excellent model for monitoring and surveillance practices, and the Center for Disease Control and Prevention’s Learn the Signs, Act Early tools can help families and providers, including those from diverse cultural and linguistic backgrounds, monitor young children’s development . Developmental monitoring can increase families’ knowledge and skills for promoting their child's development and support them in understanding when to be concerned and when to share concerns with a provider . 2 Page 2 INTRODUCTION DEVELOPMENTAL SCREENING Developmental screening includes administering a validated and standardized test or questionnaire to assess and help determine more accurately if a child is developing within a range expected for most children of the same age. 3 The American Academy of Pediatrics (AAP) recommends that developmental screening be a regular part of well-child visits for all children at 9, 18, and 30 months of age, with autism specific screening at 18 and 24 months, with the option that these screenings can occur more frequently for some children when there is a developmental concern. 4 While IDEA includes requirements for when State lead agencies conduct screening for Part C services, most developmental screenings occur through primary referral sources. REFERRAL If developmental concerns are noted by physicians, other health care providers, and early childhood educators, Part C regulations require the State to have procedures to refer, within seven days of identification, parents to the IDEA Part C program in their State for an evaluation to determine if their infant or toddler is eligible for services under IDEA Part C. Parents may also contact IDEA Part C programs directly to request an evaluation for their child. Studies have shown that parents and health care providers are the most frequent 5 and reliable 6 referral sources to IDEA Part C. Early childhood providers have also been shown to be important partners in referring infants and toddlers with developmental concerns to Part C. 7 While States are required to have child find systems in place, many families still encounter barriers to accessing developmental screening and referral to IDEA Part C for their infants and toddlers . First, many young children do not receive regular screening through well-child visits despite the AAP recommendations . One study found that only a little more than 30 percent of infants and toddlers received a parent -completed developmental screening, and 37 percent received developmental surveillance from a health care professional in a single year. 8 Even when developmental screening is broadly implemented, data shows that not all infants and toddlers who should be referred are referred. 9 There are several challenges contributing to these barriers . One challenge is a lack of providers who have the knowledge to conduct developmental screenings . Additionally, health care providers can encounter challenges finding time to conduct relevant screenings and complete referrals, as well as confusion and uncertainty related to receiving reimbursement for screening services performed. 10 Infrastructure for coordinating care across providers is often lacking or difficult to navigate. 11 Lack of understanding of key components of the IDEA Part C system, such as who the IDEA Part C program contacts are, how to contact providers in the State or community, how to refer a family, or what services the IDEA Part C program offers, can also be a barrier . 12 Additionally, primary referral sources often are hesitant to refer children who do not appear to have noticeably significant delays even though they may benefit from such services. Page 3 CASE STUDY: HOW A MONITORING SYSTEM IMPACTED CHILDREN THROUGHOUT NEBRASKA The University of Nebraska has implemented one of the only statewide Newborn Intensive Care Unit (NICU) follow-up programs in the United States. Offered free to all eligible families in the State, the Developmental Tracking Infant Progress Statewide (TIPS) program follows babies born prematurely and/or who have had a NICU experience to identify delays in their development . Participants are enrolled into the program through a pediatrician, nurse, social worker, or other staff whom they encounter in the NICU. The program includes regular and ongoing assessments of the children to monitor their progress and development using various screening tools, as determined by the extent of their prematurity, complexity of their medical history, and/or the results of preliminary hearing and vision screenings . Data are tracked to monitor the progress of children over time. TIPS specialists are trained to make referrals for follow- up appointments or additional services to address any delays that are identified through assessments conducted through Nebraska’s Early Development Network . TIPS specialists also provide ongoing counseling and guidance to parents about how to monitor their children’s development and support continued growth at home . Assessments are provided to children through the program up until age 3. Since 2000, Developmental TIPS has successfully enrolled more than 1,000 children for IDEA Part C services in Nebraska. STRATEGIES IN ACTION: ENSURING REGULAR OUTREACH TO REFERRAL SOURCES INCREASED PART C ENROLLMENT In its 2021 Annual Report to the Legislature, Maine’s State Director of Child Development Services (CDS) reported an expanded and systematic statewide outreach campaign to primary referral sources across the State . The State had traditionally reported one of the lowest child find rates and some of the narrowest eligibility criteria in the country. The State released an outreach plan that identified a list of primary referral sources (i.e., primary care physicians, audiologists, home health agencies) that needed to be contacted by each regional CDS site annually . They also released an updated list of established conditions that make children under age 3 automatically eligible for early intervention and communicated these changes through remote meetings and trainings across agencies with primary referral sources . As a result, from federal fiscal year (FFY) 2019 to FFY 2020, Maine’s Part C enrollment increased 81 % for infants (birth to 1) and 19 % for toddlers (1-to 2-year -olds), with an overall increase of 22% (birth through age 2). The State also experienced a 22 % increase in the total number of children with individual family service plans. Page 4 STRATEGIES State Part C administrators can apply research- supported approaches to support high- quality monitoring, screening, and referral within their States to equitably locate, identify, and refer infants and toddlers in need of IDEA Part C services by implementing the following strategies: PROMOTE UNIVERSAL DEVELOPMENTAL MONITORING AND SCREENING Developmental monitoring and screening to detect developmental delays or disabilities should occur as part of both newborn 13, 14 , 15 and regular well-child visits . 16, 17 The CDC offers a list of resources for conducting monitoring and screening as does the Early Childhood Learning and Knowledge Center (ECLKC), operated by the Office of Head Start. Part C administrators should partner with health care and early childhood providers to develop campaigns and resources to encourage and support providers in incorporating both developmental monitoring and developmental screening within their practice. 18 Part C administrators should also track screening rates within their States and among subgroups to target campaigns and resources toward reaching underserved infants and toddlers . PROMOTE USE OF VALIDATED SCREENING TOOLS IN MULTIPLE DOMAINS Tools designed with a strong foundation of research can promote appropriate referrals based on accurate screening results (see Resource for Support for more information) . The AAP recommends that screening tools address four developmental domains : (1) fine and gross motor skills, (2) language and communication, (3) problem -solving and adaptive behavior, and (4) personal - social skills. 19 Tools should be validated with, and appropriate for, culturally and linguistically diverse populations . A Community of Learning (COL) approach, which authentically engages specific communities to assess their needs, applies these needs toward the design and selection of tools and interventions, and supports the inclusion of children from culturally and linguistically diverse backgrounds within early childhood programs, can support communities in using strong screening practices . TRAIN EARLY CHILDHOOD PROVIDERS IN MONITORING, SCREENING, AND REFERRAL Staff in early childhood programs should understand child development and be aware of how to conduct developmental monitoring, at what age screenings should occur, and where to refer families if there are developmental concerns . 20 Part C State administrators and those of other early childhood programs should make ongoing professional development opportunities available for child care providers, home visitors, and other early childhood providers to understand developmental monitoring and screening, the use of evidence- based screening tools, how to talk with families about developmental screening results, and how to support families in the referral process to IDEA Part C. The AAP offers videos on developmental surveillance and monitoring to support this learning. The Office of Head Start has a brief on developmental screening and an infographic on children with disabilities and IDEA services that can be used by early childhood providers . States should also ensure shared use and understanding of screening results across Early Head Start and IDEA Part C agencies so that families do not have to duplicate the screening process if referred to IDEA Part C. Page 5 STRATEGIES ENSURE HEALTH PROVIDERS UNDERSTAND PART C SERVICES AND THE REFERRAL PROCESS Health care providers need to have an understanding of what IDEA Part C services are, the potential benefits of Part C services, how infants and toddlers become eligible for services, points of contact to refer children to or to get information on the program, and their role and their organizations’ practices in the referral process so that they can make well-informed decisions on referring families. State Part C administrators should specifically work with health care providers to understand the established conditions in the State in which infants and toddlers are automatically presumed eligible for early intervention services in addition to the State’s definition for developmental delay. Additionally State Part C administrators should work with health care providers to develop messaging on referral to IDEA Part C, a universal referral form to refer to IDEA Part C, and how to convey this information and provide training to other health care providers . The messaging should include the importance of connecting young children as early as possible with not only Part C but also other available services such as home visiting programs . Engagement with health care providers should go beyond pediatricians to include nurse practitioners, physician assistants, and family care providers . IMPLEMENT MEASURES TO SUPPORT SCREENING AND REFERRAL FOR FAMILIES State Part C administrators should work with primary referral sources on how to effectively support families in the referral process . When a referral is made, health care and early childhood providers should be able to discuss the referral process and next steps in a way that is culturally and linguistically responsive so that families can understand the process, know what to expect, and are clear about how to get support along the way . Patient navigators, who are assigned to work with families through the IDEA Part C referral process can be a good support . 21 In addition, the AAP offers a checklist and tip sheet for parents to follow in navigating the referral process that States can disseminate to local agencies and providers when they engage with families . DEVELOP SUPPORTING INFRASTRUCTURE SYSTEMS States should have integrated or linked data systems to track screenings and referrals throughout the eligibility process. 22 These data systems should allow States to disaggregate by key demographics like age, race, ethnicity, socioeconomic status, or language status, to identify any disparities in who is getting screened and referred within communities and disparities in outcomes of referrals . Part C Child Find Funnel Chart Tool | DaSy Center can be used by IDEA Part C programs to generate a funnel chart that allows for easy visualization of the data. States should also include information on young children identified as at -risk as part of their tracking system to monitor infants and toddlers before they are referred to IDEA Part C, if they are referred and not found eligible, and after they exit Part C. 23 Georgia’s Child Data System links data across six major early care and education programs, including subsidized child care, home visiting, State preschool, Head Start, preschool special education, and early intervention. This system aligns data from programs and services serving children birth through five and their families and helps the State identify service gaps, target services for underserved children, and support research on program outcomes . Page 6 PUTTING THE STRATEGIES INTO PRACTICE HOW CAN STATE PART C ADMINISTRATORS PROMOTE MONITORING, VALID AND STANDARDIZED SCREENING, AND REFERRAL? IMPLEMENT WIDESPREAD UNIVERSAL SCREENING Research has shown that when implemented broadly, universal screening for developmental delays can increase referrals for IDEA Part C among traditionally underserved populations . 24 In addition to referrals from health care providers and other professionals, States can increase families’ access to screening and self-referral by making screening measures and tools broadly available online and including links to a State’s Part C program to make a referral . States can also provide online step-by-step guides aimed at providers to improve their awareness of the screening and referral process. See the Delaware Readiness Teams for an example of online resources that have helped families and providers navigate the screening and referral process. Additionally, the Well Visit Planner is a free tool that operationalizes the AAP’s Bright Futures Screening guidelines and provides resources that can be used by parents, providers, and cross- systems partners to promote universal screening. INCLUDE SCREENING OF SOCIAL AND EMOTIONAL WELLNESS Genetics and trauma, among other factors, may contribute to mental health concerns for young children, and these concerns should be addressed as part of the promotion of healthy development . Screening processes should consider infant and toddler social -emotional development and include an assessment of protective factors for the child as well as their family and larger community . The AAP offers a list of tools that can be used to screen infant and toddler social -emotional development . RESOURCE FOR SUPPORT The Compendium of Screening Measures for Young Children provides a comprehensive set of 11 screening tools that meet the following quality criteria: ( a) tool accuracy (b) inclusion of family input (c) inclusion of the social and emotional domain of development The tool was developed as part of a Federal task force’s Birth to Five : Watch Me Thrive initiative , a coordinated effort to encourage developmental and behavioral screening and support for children, families, and providers . Page 7 PUTTING THE STRATEGIES INTO PRACTICE ESTABLISH AND ENFORCE REFERRAL POLICIES State Part C Administrators can ensure that policies for screening and referral are well- documented and understood by IDEA Part C agencies and partners . Part C administrators should be attuned to regional variations in referral and target public awareness campaigns and trainings to these areas to overcome any information barriers. States can develop web-based tools and communications to support information sharing. For example, Illinois offers a self -paced Early Intervention Training Program module that walks referral sources through each step of the referral process . HOW CAN ADMINISTRATORS PROMOTE REFERRALS ACROSS MULTIPLE REFERRAL SOURCES? PROMOTE PRACTICES TO TRACK REFERRALS THROUGH COMPLETION A State -developed universal referral form can make the process of referring easier for primary referral sources and facilitate data sharing across systems. Providers often indicate that a barrier to referral is not understanding what happens to families after they are referred to Part C. State Part C administers should work with health care providers and early intervention service providers on how to share data to close the referral loop. The Oregon Pediatric Improvement Partnership offers a step-by-step guide to the referral process, including links to relevant forms and resources, to help families and providers track progress . This support allows initial referrers to track what happened after an infant or toddler was referred, including results of evaluations and services that IDEA Part C will provide so that they can conduct any follow up treatment or coordination of services, as necessary, with the family . This can be a strong incentive for primary referral sources to be more invested in the referral process and reduces the burden on families to bridge communications . IMPLEMENT A CENTRALIZED TRACKING SYSTEM Research shows that centralized referral processes that track infants and toddlers from referral through the eligibility process substantially increase rates of connection to Part C early intervention services. 25 A centralized website where anyone can make a referral and access information about developmental concerns warranting referral, such as Colorado’s Electronic Referral System , can promote this process . CREATE A LEARNING NETWORK FOR PROVIDERS Providers often learn best from colleagues, and this can include strategies that have been successful to support developmental monitoring, screening and referral . Part C administrators can bring providers together remotely or in person to provide them with information on IDEA Part C services, including referral and eligibility, give providers the opportunity to share their concerns, and hear how other providers have navigated barriers to support referral to IDEA Part C and connect infants and toddlers with needed services and providers . Page 8 PUTTING THE STRATEGIES INTO PRACTICE HOW CAN SCREENING AND REFERRAL CONTRIBUTE TO GREATER EQUITY IN PART C SERVICES? PARTNER WITH PARENT TRAINING AND INFORMATION CENTERS (PTIS) AND COMMUNITY PARENT RESOURCE CENTERS (CPRCS) The PTIs and CPRCs serve as a direct connection for families to resources, and can support referral by helping families understand the referral process and the services offered under IDEA Part C. Because of their involvement with families in various communities and staff’s personal experiences engaging with IDEA Part C systems, PTIs and CPRCs can play a key role in helping primary referral sources understand the importance of IDEA Part C services. The Massachusetts PTI has a contract with the IDEA Part C lead agency to support screening and referral efforts . They work with physicians and child care providers on conducting developmental monitoring and screening, the referral process to IDEA Part C, and how to talk with families to help them understand the benefit of beginning the referral process as soon as possible. ENSURE MONITORING, SCREENING AND REFERRAL IS CULTURALL Y AND LINGUISTICALLY RESPONSIVE States should ensure that monitoring, screening and referral practices are se nsitive to cultural and ling uistic differences within t heir communities. As previously stated, families bring their ow n sets of beliefs and va lues to the referral process . Communication with parents and families should be tailored to reflect these differences (See mo re detail in the Engagement G uide on Outreach and Engagement ). Further, valid and reliable screening tools available in multiple languages have been shown to reduce disparities and promote equity in early identification. 26 If there are no valid and reliable screening instrument options available that match a child’s culture and language, programs should develop alternative plans for screening children who speak languages other than English. This includes working with interpreters, communicating with families, and interpreting results with caution. The ECLKC has resources that can help programs make decisions on screening children w ho speak languages other than English. PROMOTE FLEXIBLE APPROACHES TO SCREENING AND REFERRAL State Part C administrators should work with families, health care providers, early childhood providers, and other primary referral sources to help them identify how to address barriers to completing the screening and referral process . For instance, promoting more widespread use of telehealth for screening by primary referral sources may address some of the distance and access issues experienced by families who have work conflicts, have long distances to travel, or want to involve multiple family members in the process . Page 9 ENDNOTES 1 Office of Early Childhood Development (OECD), US Department of Health and Human Services (HHS). (2020) Birth to 5: Watch Me T hrive! Washington, DC. Retrieved from: https://www.acf.hhs.gov/ecd/child- health-development/watch -me-thrive . 2 Graybill, E., Self -Brown, S., Lai, B., Vinoski, E., McGill, T., & Crimmins, D. (2016). Addressing Disparities in Parent Educat ion: Examining the Effects of Learn the Signs/Act Early Parent Education Materials on Parent Outcomes. Early Childhood Education Journal, 44(1), 31- 38. https://doi.org/10.1007/s10643-014-0680-3 3 Centers for Disease Control (CDC) (2020, November 19). Facts about developmental disabilities. Retrieved from: https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html . 4 Lipkin, P.H., & Macias, M.M. (2020). Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening. Pediatrics, 145(1). Retrieved from: https://publications.aap.org/pediatrics/article/145/1/e20193449/36971/Promoting-Optimal- Development-Identifying -Infants . 5 Bradley, M. C., Daley, T., Levin, M., O’Reilly, R., Parsad, A., Robertson, A., and Werner, A. (2011). IDEA National Assessment Implementation Study (NCEE 2011 -4027). Washington, DC: National Center for Education Evaluation and Regional Assistance, Institute of Education Sciences, U. S. Department of Education. 6 Wang, C., Hudson, M., Liu, X., Ward, R., & Feldman, M. (2016). Parent Prediction of Autism Spectrum Disorder in Infants at Ri sk: A Follow -up Study. Journal of Child & Family Studies, 25(12), 3593 –3606. https://link.springer.com/article/10.1007/s10643 -014- 0680-3 7 Farnsworth, E. M. (2018). Influence of Child Find Referral Mechanisms on Early Childhood Special Education Participation [ProQ uest LLC]. In ProQuest LLC. 8 Hirai, A.H., Kogan, M.D., Kandasamy, V., Reuland, C., & Bethell, C. (2018). Prevalence and Variation of Developmental Screeni ng and Surveillance in Early Childhood. JAMA Pediatrics, 172(9): 857- 866. doi:10.1001/jamapediatrics.2018.1524. 9 Farnsworth, E. M. (2018). Influence of Child Find Referral Mechanisms on Early Childhood Special Education Participation [ProQ uest LLC]. In ProQuest LLC. 10 Elensary , M., & Silverstein, M. (2020). Understanding Gaps in Developmental Screening and Referral. Pediatrics, 145(4). Retrieved from: https://publications.aap.org/pediatrics/article/145/4/e20200164/36937/Understanding -Gaps -in -Developmental -Screening -and. 11 US Department of Education (ED)/US Department of Health and Human Services (HHS) (2017). Collaboration and Coordination of the M aternal, Infant, and Early Childhood Home Visiting Program and the Individuals with Disabilities Education Act Part C Programs. Washingto n, DC. Retrieved from: https://sites.ed.gov/idea/files/ed- hhs-miechv -partc -guidance.pdf . 12 Vitrikas, K., Savard, D. & Bucaj, M. (2017). Developmental Delay: When and How to Screen. American Family Physician, 96(1): 36- 43. Retrieved from: https://www.aafp.org/afp/2017/0701/p36.html . 13 Bailey, D. B. (2021). Early Intervention and Newborn Screening: Parallel Roads or Divergent Highways? Infants & Young Children, 34(1), 3– 16. https://doi.org/10.1097/IYC.0000000000000181 14 US Department of Health and Human Services (HHS) (2008). Newborn Screening Laboratory Bulletin. Retrieved from: https://www.cdc.gov/nbslabbulletin/pdf/nslb_bulletin.pdf . 15 Korver, A.M.H., Konings, S., Dekker, F.W., Beers, M., Wever, C.C., Frijns, J.H.M., & Oudesluys -Murphy, A.M. (2010). Newborn H earing Screening vs Later Hearing Screening and Developmental Outcomes in Children With Permanent Childhood Hearing Impairment. Journal of the Am erican Medical Association (JAMA), 304(15):1701 -1708. doi:10.1001/jama.2010.1501. 16 Lipkin, P.H., & Macias, M.M. (2020). Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening. Pediatrics, 145(1). Retrieved from: https://publications.aap.org/pediatrics/article/145/1/e20193449/36971/Promoting-Optimal- Development-Identifying -Infants . 17 Farnsworth, E. M. (2018). Influence of Child Find Referral Mechanisms on Early Childhood Special Education Participation [ProQue st LLC]. In ProQuest LLC. 18 Vitrikas, K., Savard, D. & Bucaj, M. (2017). Developmental Delay: When and How to Screen. American Family Physician, 96(1): 36- 43. Retrieved from: https://www.aafp.org/afp/2017/0701/p36.html . 19 Vitrikas, K., Savard, D. & Bucaj, M. (2017). Developmental Delay: When and How to Screen. American Family Physician, 96(1): 36- 43. Retrieved from: https://www.aafp.org/afp/2017/0701/p36.html . 20 Farnsworth, E. M. (2018). Influence of Child Find Referral Mechanisms on Early Childhood Special Education Participation [ProQuest LLC]. In ProQuest LLC. Page 10 ENDNOTES 21 Conroy, K., Rea, C., Kovacikova, G. I., Sprecher, E., Reisinger, E., Durant, H., Starmer, A., Cox, J., & Toomey, S. L. (2018). Ensuring Timely Connection to Early Intervention for Young Children With Developmental Delays. Pediatrics, 142(1), e20174017. https://doi.org/10.1542/peds.2017- 4017 22 ZERO to THREE (2021). Recommendations on Developmental Screening Follow -up Practices and Policies for Federal, State, and Com munity Level Stakeholders. Washington, DC: National Institute for Children’s Health Quality (NICHQ). Retrieved from : https://www.zerotothree.org/wp- content/uploads/2022/11/Recommendations -on -Developmental -Screening- Follow-up-Practices- and-Policies- for-Federal -State -and -Commun ity-Level - Stakeholders.pdf . 23 Edwards, N. M., Gallagher, P. A., & Green, K. B. (2013). Existing and Proposed Child Find Initiatives in One State’s Part C P rogram. Rural Special Education Quarterly, 32(1), 11–19. doi:10.1177/875687051303200103. 24 Wallis, K.E., Davis Rivera, L.B., Guthrie, W., Bennett, A.E., Mandell, D.S., & Miller, J.S. (2021). Provider Responses to Positive Developmental Screening: Disparities in Referral Practices? Journal of Developmental & Behavioral Pediatrics, 42(1), 23- 31. doi: 10.1097/DBP.0000000000000855 25 Sanders, B.W., Zuckerman, K.E., Ash, J.S., Kopstick, A.J., Rivas, V.L., & Gorman, P.N. (2021). Early Intervention Referral Information, Transmission, and Sources —A Survey of State Part C Coordinators and Analysis of Referral Forms, Journal of Developmental & Behavioral Pediatri cs: doi: 10.1097/DBP.0000000000001004 26 Wallis, K.E., Davis Rivera, L.B., Guthrie, W., Bennett, A.E., Mandell, D.S., & Miller, J.S. (2021). Provider Responses to Positive Developmental Screening: Disparities in Referral Practices? Journal of Developmental & Behavioral Pediatrics, 42(1), 23- 31. doi: 10.1097/DBP.0000000000000855 STOCK PHOTO ATTRIBUTION Page 1: iStockphoto.com/ katleho Seisa. Stock photo ID: 1127388843. Baby boy getting examined by a doctor during his check -up. Page 2: iStockphoto.com/ Prostock-studio. Stock photo ID: 1331252840. Doctor giving a toddler a check -up. Page 3. iStockphoto.com/ peakSTOCK. Stock photo ID: 1279177960 . An infant getting their hearing screened. Page 5: iStockphoto.com/ PeopleImages. Stock photo ID: 1356427792. Young woman bonding with her baby at home. Page 6: iStockphoto.com/Yana Tikhonova. Stock photo ID: 1368951973. Girl playing with educational toys. Page 7: iStockphoto.com/ RuslanDashinsky. Stock photo ID: 1345985117. Baby playing with plastic balls. Page 8: Pexels.com/ GretaHoffman. Pexels photo ID: 9705731. Couple smiling at their daughter. DISCLAIMER Other than statutory and regulatory requirements included in the document, the contents of this document do not have the force or effect of law and are not meant to bind the public. This document is intended only to provide clarity to the public regarding existing requirements under the law or agency policies. This document is intended as a resource on identifying, locating, and evaluating infants and toddlers for Individuals with Disabilities Education Act (IDEA) Part C services. Further, this document does not provide specific guidance on Federal disability laws. This document contains resources and examples that are provided for the user’s convenience. The inclusion of these materials is not intended to reflect their importance, nor is it intended to endorse any views expressed, or products or services offered. These materials may contain the views and recommendations of various subject -matter experts as well as hypertext links, contact addresses and websites to information created and maintained by other public and private organizations . The opinions expressed in any of these materials do not necessarily reflect the positions or policies of the U.S. Department of Education (Department) . The Department does not control or guarantee the accuracy, relevance, timeliness, or completeness of any outside information included in these materials . For the reader’s convenience, this document contains examples of potentially useful products and resources . Inclusion of such information does not constitute an endorsement by the Department or the Federal government, nor a preference/support for these examples as compared with others that might be available and be presented.

Page 1 GUÍA DE ASISTENCIA TÉCNICA PARA LA IMPLEMENTACIÓN DEL ADMINISTRADOR DE LA PARTE C MONITOREO, DETECCIÓN Y DERIVACIÓN DEL DESARROLLO INTRODUCCIÓN La Ley de Educación para Individuos con Discapacidades ( Individuals with Disabilities Education Act, IDEA ) requiere que las age ncias principales estatales de la Parte C tengan un sistema integral de búsqueda de niños . El sistema de búsqueda de niños debe contar con procedimientos de derivación para que los padres ; proveedores de atención médica, como pediatras ; agencias de servicios sociales ; educadores de la primera infancia; y otras personas puedan derivar a los niños a la Parte C de la Ley IDEA si tienen inquietudes sobre su desarrollo. Como parte de su trabajo con niños pequeños, estos proveedores y programas utilizan regularmente la supervisión del desarrollo y realizan evaluaciones del desarrollo para determinar si los niños alcanzan los objetivos de desarrollo. Por lo tanto, son socios clave en el trabajo con los programas de la Parte C de la Ley IDEA para identificar a los bebés y niños pequeños que pueden tener discapacidades o retrasos en el desarrollo, y luego poner en contacto a las familias con la Parte C de la Ley IDEA para una evaluación adicional . 1 DEVELOPMENTAL SUPERVISIÓN DEL DESARROLLO Los médicos, otros proveedores de atención médica y los educadores de la primera infancia utilizan regularmente la supervisión del desarrollo , una práctica informal de observar el desarrollo de los niños pequeños y escuchar las inquietudes de las familias sobre el desarrollo de sus hijos, para ver cómo los niños van alcanzando los objetivos de las etapas del desarrollo. La supervisión del desarrollo no requiere herramientas estandarizadas , pero quienes la llevan a cabo deben conocer los objetivos de las etapas de la infancia y cómo identificar a un niño que no alcanza estos objetivos . El documento Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents of Infants, Children, and Adolescents (Un futuro brillante: Pautas para la super visión de la salud de bebés , niños y adolescentes ) de la American Academy of Pediatrics ofrece un excelente modelo para las pr ácticas de supervisión y control, y las herramientas de los CDC Learn the Signs, Act Early (Aprenda los signos . Reaccione pront o) de los Centros para el Control y la Prevención de Enfermedades pueden ayudar a las familias y a los proveedores , incluso a aquellos de culturas diferentes o que hablan otros idiomas , a supervisar el desarrollo de los niños pequeños . La supervisión del desarrollo puede aumentar el conocimiento y las habilidades de las familias para promover el desarrollo de sus hijos y ayudarlas a comprender cuándo deben preocuparse y en qué momento pueden compartir sus inquietudes con un proveedor . 2 PRINCIPIOS LEGALES Y REGLAMENTARIOS CLAVE DE LA PARTE C DE LA LEY IDEA • Sistema integral de búsqueda de niños • Identificación temprana y adecuada de todos los niños elegibles, incluidos los de grupos desatendidos • Coordinación entre agencias y programas de primera inf ancia • Difusión e involucramiento de las familias y fuentes de der ivación primarias • Promoción del desarrollo, el aprendizaje y la prepar ación para la escuela Secciones 632, 634 , 635(a)1)-(8 ), 636(a), and 637(a)(3- (7 ) de la Ley IDEA y el Título 34 Parte 303 del C.F.R. Page 2 INTRODUCCIÓN EVALUACIÓN DEL DESARROLLO La evaluación de desarrollo incluye la administración de una prueba o cuestionario validado y estandarizado para evaluar y ayudar a determinar con mayor precisión si un niño se está desarrollando dentro del rango esperado para la mayoría de los niños de la misma edad. 3 La Academia Americana de Pediatría (American Academy of Pediatrics, AAP) recomienda que la evaluación de des arrollo sea una parte normal de las visitas de niño sano para todos los niños a los 9, 18 y 30 meses de edad, con una evaluación específica del autismo a los 18 y a los 24 meses, con la opción de que estas evaluaciones puedan realizarse con más frecuencia para algunos niños cuando hay una inquietud relacionada con el desarrollo. 4 Si bien la Ley IDEA incluye requisitos para cuando las agencias estatales principales realizan evaluaciones para los servicios de la Parte C, la mayoría de las evaluaciones de desarrollo se realizan a través de fuentes de derivación primaria. DERIVACIONES Si los médicos, otros proveedores de atención médica y los educadores de la primera infancia notan problemas de desarrollo, las reglamentaciones de la Parte C exigen que el estado cuente con procedimientos para derivar a los padres al programa de la Parte C de la Ley IDEA en su estado, dentro de los siete días posteriores a la identificación, para una evaluación que permita determinar si su bebé o niño pequeño es elegible para recibir servicios conforme a la Parte C de la Ley IDEA. Los padres también pueden comunicarse directamente con los programas de la Parte C de la Ley IDEA para solicitar una evaluación para su hijo . Los estudios han demostrado que los padres y los proveedores de atención médica son las fuentes de derivación a la Parte C de la Ley IDEA más frecuentes 5 y confiables 6. También se ha demostrado que los proveedores de primera infancia son socios importantes en la derivación a la Parte C de bebés y niños pequeños con problemas de desarrollo. 7 Si bien se exige a los estados contar con sistemas de búsqueda de niños, muchas familias todavía enfrentan barreras para acceder a la evaluación del desarrollo y la derivación a la Parte C de la Ley IDEA para sus bebés y niños pequeños . En primer lugar, muchos niños pequeños no se someten a evaluaciones frecuentes en las visitas de niño sano, a pesar de las recomendaciones de la AAP. Un estudio descubrió que solo poco más del 30 % de los bebés y niños pequeños recibieron una evaluación del desarrollo completada por los padres, y el 37 % recibió supervisión del desarrollo por parte de un profesional de la salud en un solo año. 8 Incluso cuando la evaluación del desarrollo se implementa ampliamente, los datos muestran que no todos los bebés y niños pequeños que deberían derivarse se derivan. 9 Existen varios desafíos que contribuyen a crear estas barreras . Uno de los desafíos es la falta de proveedores idóneos para realizar evaluaciones del desarrollo. Además, los proveedores de atención médica pueden enfrentar complicaciones para encontrar el tiempo necesario para realizar evaluaciones relevantes y derivaciones completas, así como confusión e incertidumbre con respecto a cómo recibir el reembolso por los servicios de evaluaciones realizados . 10 A menudo falta infraestructura para coordinar la atención entre los proveedores, o es difícil de transitar. 11 La falta de comprensión de los componentes clave del sistema de la Parte C de la Ley IDEA, como quiénes son los contactos de este programa, cómo comunicarse con los proveedores del estado o la comunidad, cómo derivar a una familia o qué servicios ofrece el programa de la Parte C de la ley IDEA, también puede ser una barrera. 12 Además, las fuentes de derivación primaria a menudo dudan en derivar a niños que no parecen tener retrasos notablemente significativos a pesar de que pueden beneficiarse de dichos servicios. Page 4 ESTRATEGIAS Los administradores estatales de la Parte C pueden aplicar enfoques respaldados por investigaciones para contribuir con la supervisión, la evaluación y la derivación de alta calidad dentro de sus estados para ubicar, identificar y derivar de manera equitativa a los bebés y niños pequeños que necesitan los servicios de la Parte C de la Ley IDEA mediante la implementación de las siguientes estrategias PROMOVER EL USO DE HERRAMIENTAS DE EVALUACIÓN VALIDADAS EN MÚLTIPLES DOMINIOS Las herramientas diseñadas con una base sólida de investigación pueden promover derivaciones adecuadas basadas en resultados de evaluación precisos (consulte Recursos de apoyo para obtener más información) . La AAP recomienda que las herramientas de evaluación aborden cuatro áreas del desarrollo: (1) habilidades motoras finas y gruesas, (2) lenguaje y comunicación, (3) resolución de problemas y comportamiento adaptativo, y (4) habilidades personales y sociales . 19 Las herramientas deben ser validadas y apropiadas para poblaciones cultural y lingüísticamente diversas . Un Enfoque de Comunidad de Aprendizaje (Community of Learning, COL) que realmente involucra a comunidades específicas para evaluar sus necesidades, aplica estas necesidades para el di seño y la selección de herramientas e intervenciones y apoya la inclusión de niños de orígenes culturales y lingüísticamente diversos dentro de los programas de la primera infancia, puede ayudar a las comunidades a usar prácticas sólidas de evaluación. CAPACITAR A LOS PROVEEDORES DE LA PRIMERA INFANCIA PARA LA SUPERVISIÓN, LA EVALUACIÓN Y LA DERIVACIÓN El personal de los programas para la primera infancia debe comprender el desarrollo infantil y saber cómo realizar un seguimiento del desarrollo, a qué edad deben realizarse las evaluaciones y adónde derivar a las familias si hay problemas de desarrollo. 20 Los administradores estatales de la Parte C y los de otros programas de la primera infancia deben ofrecer oportunidades de desarrollo profesional continuo para los proveedores de cuidado infantil, los visitantes domiciliarios y otros proveedores de la primera infancia para que comprendan la supervisión y la evaluación del desarrollo, el uso de herramientas de evaluación basadas en la evidencia, cómo hablar con las familias sobre los resultados de la evaluación del desarrollo y cómo apoyar a las familias en el proceso de derivación a la Parte C de la Ley IDEA. La AAP ofrece videos sobre supervisión y control del desarrollo para apoyar este apr endizaje. La Oficina de Head Start tiene un informe sobre la evaluación del desarrollo y una infografía sobre niños con discapacidades y los servicios de IDEA que pueden usar los proveedores de la primera infancia. Los estados también deben garantizar el uso compartido y la comprensión de los resultados de las evaluaciones en las agencias de Early Head Start y la Parte C de la ley IDEA para que las familias no tengan que duplicar el proceso de evaluación si se las deriva a la Parte C de la ley IDEA. PROMOVER LA SUPERVISIÓN Y LA EVALUACIÓN UNIVERSALES DEL DESARROL LO La supervisión del desarrollo y la evaluación para detectar retrasos en el desarrollo o discapacidades deben hacerse tanto con el recién nacido 13, 14, 15 como en las visitas periódicas de niño sano. 16,17 Los CDC ofrecen una lista de recursos para llevar a cabo la supervisión y la evaluación, al igual que el Centro de Aprendizaje y Conocimiento de la Primera Infancia (Early Childhood Learni ng and Knowledge Center, ECLKC) , operado por la Oficina de Head Start. Los administradores de la Parte C deben asociarse con los pr oveedores de atención médica y de la primera infancia para desarrollar campañas y recursos para alentar y apoyar a los proveedores con el objetivo de que incorporen tanto la supervisión como la evaluación del desarrollo en su práctica profesional . 18 Los administradores de la Parte C también deben realizar un seguimiento de las tasas de detección dentro de sus estados y entre los subgrupos para orientar las campañas y los recursos para llegar a los bebés y niños pequeños desatendidos . P5 ESTR ASEG OS SERVICIO Los mde los de la P C de la L I lobe pot de es s qu351 a b y ni p parlose lopunt a lo ni u obt y pap y la pr par puedtod bi la d de f . Los la P C del de lop lac e en la que lobe y ni peq se pr ad la def de re en el . Aloadm la P C del debt lo pr mpar la der a la P C de la Ley I y un fo de der la P C par de q ma esy of a ot pr m. El m dei i de po a lo ni p lo ant p no s cla P C, t sdi lopr v . El c lo pr debir m ade lo pe inenf y pr f. IM LA Losr ef pr -y r o. Losla Ley I 21 A l par al con la DESARRO Los des de i o v de la ev y der a lo l e. 2Ess pa lo es c por cl c ed, r, et, c o de , parid di equi y der dde la c y di lor de la d . La h Ch Funpue s lopr la P C de la L I par em224 qu p uf v lodat . Los ini loni en r c pde su de s p a lo b y ni pe de que s a la P C de la L I si s y no se det que se , des de la P C 2El Sis de d de ni vilodat si y c en lo pr , qu c ins, vdom , pr , He S educ e i t. Essi a datlopr y s que a a lo ni loc a361 y s f , ay a id labr los , or lose loni y r la i lor. Page 6 CÓMO PONER LAS ESTRATEGIAS EN PRÁCTICA ¿CÓMO PUEDEN LOS ADMINISTRADO RES DE LA PARTE C DEL ESTADO PROMOVER LA SUPERVISIÓN, LA EVALUACIÓN VÁLIDA Y ESTANDARIZAD A Y LA DERIVACIÓN? INCLUSIÓN DE LA EVALUACIÓN DEL BIENESTAR SOCIAL Y EMOCIONAL La genética y las situaciones traumáticas , entre otros factores , pueden contribuir a los problemas de salud mental en niños pequeños, y estos problemas deben abordarse como parte de la promoción de un desarrollo saludable. Los procesos de evaluación deben considerar el desarrollo socioemocional de los bebés y niños pequeños e incluir una evaluación de los factores de protección para el niño, así como para su familia y la comunidad en general . La AAP ofrece una lista de herramientas que se pueden usar para evaluar el desarrollo socioemocional de bebés y niños pequeños . IMPLEMENTACIÓN DE UNA EVALUACIÓN UNIVERSAL GENERALIZADA La investigación ha demostrado que, cuando se implementa ampliamente , la evaluación universal de retrasos en el desarrollo puede aumentar las derivaciones a la Parte C de la Ley IDEA entre las poblaciones tradicionalmente desatendidas . 24 Además de las derivaciones de los proveedores de atención médica y otros profesionales , los estados pueden ampliar el acceso de las familias a la evaluación y la autoderivación al hacer que las medidas y herramientas de evaluación estén abiertamente disponibles en línea e incluir enlaces al programa de la Parte C de un estado para hacer una derivación. Los estados también pueden proporcionar guías paso a paso en línea dirigidas a los proveedores para mejorar su conocimiento sobre el proceso de evaluación y derivación. Visite el sitio web de los Delaware Readiness Teams para tener un ejemplo de recursos en línea que han ay udado a las familias y los proveedores a transitar el proceso de evaluación y derivación. Además, Well Visit Planner es una herramienta gratuita que pone en práctica las pautas de evaluación de Br ight Futures de la AAP y proporciona recursos que pueden ser utilizados por padres, proveedores y socios de distintos sistemas para promover la evaluación universal . RECURSOS DE APOYO El Compendio de medidas de evaluación para niños pequeños proporciona un conjunto i ntegral de 11 herramientas de evaluación que cumplen con los siguientes criterios de calidad 22500 precisión de la herramienta 22500 inclusión de aportes familiares 22500 inclusión del dominio social y emocional del desarrollo La herramienta fue desarrollada como parte de un grupo de trabajo federal la iniciativa Birth to Five Watch Me Thrive, un esfuerzo c oordinado para alentar la evaluación y el apoyo del desarrollo y la conducta de los niños, las familias y los proveedores . P7 C 277 L ADM ES PRO DERIVACIO T M F DERIVACI323 EST Los la P C del pas que laag y lo so de la P C de la L I es bdoc y ent lapol la ev y la der. Los de la P C deb es a la v la der y d c de c py l c a es s de i. L pdes y c en la p de i . P I of un pr M del Cen I T que a la f a t. IM Las muqlopr a lo b y ni la der y t eaum s lat los de la P C 25 Un s c donc puehac d y ac a i s juun S de de el de , puede . PRO DERIVACIO Un f de d fel de der de der y f el de dat . L pr a m inquno c lo qu les a la des que se la der a la P C pue b. Los la P C del es debt lopr my lo p sede i cde . La As de de O (Ore P, Oo un gu355 pas a p de der, i a f y r r a la y lo pr a r s d. Es ap p a lo d inr lo qu de qu se der a un be o ni lor laev y lo s qu pr la P C de la Ley I par pr tde s o c de se de la . Es pu un fu i laf se i d y di la c la c a la c lapar . CRE URDEA PPR Lp a m mde s y es puede ines que t 351p la su d la ev y la d. L de la P C pueden a l de fo o en p i sede la P C de la L I i dy e pr a lo pr la opo cs y es pr han loo la a la P C de la L ID y poner a lo beb351s y ni lose y pr . Page 8 CÓMO PONER LAS ESTRATEGIAS EN PRÁCTICA ¿CÓMO PUEDEN CONTRIBUIR LA EVALUACIÓN Y LA DERIVACIÓN A UNA MAYOR EQUIDAD EN LOS SERVICIOS DE LA PARTE C? ASOCIACIÓN CON CENTROS DE INFORMACIÓN Y CAPACITACIÓN PARA PADRES (PTI) Y CENTROS COMUNITARIOS DE RECURSOS PARA PADRES (CPRC) 26 Los Centros de Información y Capacitación para Padres (Parent Training and Information, PTI) y los C entros Comunitarios de Recursos para Padres (Community Parent Resource Centers, CPRC) sirven c omo una conexión directa entre las familias y los recursos , y pueden respaldar la derivación al ayudar a las familias a comprender el proceso de derivación y los servicios que se ofrecen conforme a la Parte C de la Ley IDEA. Debido a su relación con las familias en varias comunidades y las experiencias personales del personal en relación con los sistemas de la Parte C de la Ley IDEA, los PTI y los CPRC pueden desempeñar un papel clave para ayudar a las fuentes de derivación primarias a comprender la importancia de los servicios de la Parte C de la ley IDEA. El PTI de Massachusetts tiene un contrato con la agencia principal de la Parte C de la Ley IDEA para apoyar los esfuerzos de evaluación y derivación . Trabajan con médicos y proveedores de cuidado infantil en la supervisión y la evaluación del desarrollo, el proceso de derivación a la Parte C de la ley IDEA y cómo hablar con las familias para ayudarlas a comprender el beneficio de comenzar el proceso de derivación lo antes posible. ASEGURÁNDOSE DE QUE LA SUPERVISIÓN, LA EVALUACIÓN Y LA DERIVACIÓN RESPONDAN A LAS NECESIDADES CULTURALES Y LINGÜÍSTICAS Los estados deben garantizar que las prácticas de supervisión, evaluación y derivación tengan en cuenta las diferencias culturales y lingüísticas dentro de sus comunidades . Como se indicó anteriormente, las familias aportan sus propios conjuntos de creencias y valores al proceso de derivación. La comunicación con los padres y las familias debe adaptarse para reflejar estas diferencias (consulte más detalles en la guía sobre difusión e involucramiento). Además, se ha demostrado que las herramientas de evaluación válidas y confiables disponibles en varios idiomas reducen las disparidades y promueven la equidad en la identificación temprana. 27 Si no hay opciones de instrumentos de evaluación válidos y confiables disponibles que coincidan con la cultura y el idioma de un niño, los programas deben desarrollar planes alternativos para evaluar a los niños que hablan otros idiomas distintos al inglés. Esto incluye trabajar con intérpretes , comunicarse con las familias e interpretar los resultados detenidamente . El ECLKC tiene recursos que pueden ayudar a los programas a tomar decisiones sobre la evaluación de los niños que hablan otros idiomas distintos al inglés . FOMENTAR ENFOQUES FLEXIBLES PARA LA EVALUACIÓN Y LA DERIVACIÓN Los administradores de la Parte C del estado deben trabajar con las familias , los proveedores de atención médica, los proveedores de la primera infancia y otras fuentes de derivación primarias para ayudarlos a identificar de qué manera abordar las barreras para completar el proceso de evaluación y derivación. Por ejemplo, promover un uso más generalizado de la telesalud para la evaluación por parte de fuentes de derivación primarias puede abordar algunos de los problemas de distancia y acceso que ex perimentan las familias que tienen conflictos laborales , tienen que viajar largas distancias o desean involucrar a varios miembros de la familia en el proceso.