Birth to 5: Watch Me Thrive!

Birth to 5: Watch Me Thrive! Early Intervention/Early Childhood Special Interest Group (EIEC SIG) Webinar Series May 27, 2014

Webinar Overview Introductions Presentation Q & A You can ask a question by pressing the then # key to request the floor. Questions will be answered in the order they are received. You can also submit any questions throughout the webinar via the Chat box. The moderator will read the questions after the presentations. Survey Please complete our short survey to give us feedback for the next webinar!

Early Intervention/ Early Childhood (EIEC) Special Interest Group Co-Chairs Mary Beth Bruder, PhD, is a Professor of Pediatrics and Educational Psychology, at the University of Connecticut School of Medicine. For almost 40 years she has been involved in the design, provision and evaluation of early childhood services across local, state, national and international early intervention, special education, child care and head start programs. During this time, she has also directed a number of state and federally funded pre-service, in-service, demonstration, and research projects, and she is the Editor of Infants and Young Children. Currently, she is Director of the University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research, and Service and the OSEP Early Childhood Personnel Center. Dr. Cordelia Robinson, PhD, RN, has been Director of JFK Partners since 1993, an interdepartmental program of Pediatrics and Psychiatry at the CU School of Medicine. In this role she is responsible for providing leadership, direction to an interdisciplinary professional staff of over 40 faculty members. Dr. Robinson has professional preparation in Nursing (BS) Special Education (MA) and Developmental Psychology with a research specialty in Intellectual Disabilities (PhD) from Peabody College, Vanderbilt University. She is currently Professor of Pediatrics and Psychiatry. She has worked in the field of early intervention for children with developmental disabilities as a clinician, researcher and educator of personnel from multiple disciplines since 1973. She has been the PI on over 30 federally funded demonstration, training or research projects in the field of Developmental Disabilities and Intellectual Disabilities. Work since 2001 has been focused on Autism Spectrum Disorders.

Webinar Agenda EIEC Co-Chairs - Overview of the Webinar (5 min) AUCD Overview of 6 by 15 (5 min) ACF/ACL - Overview of Birth to Five (5 min) CDC Overview of Act Early (5 min) HRSA Overview of HRSA/MCHB Programs (5 min) AAP Overview of AAP Initiatives, Programs (5 min) Group discussion with presenters (30 min)

Presenters Katherine A. Beckmann is a Senior Policy Advisor for Early Childhood Health and Development within the Office of the Deputy Assistant Secretary and Interdepartmental Liaison for Early Childhood at the Administration for Children and Families, Department of Health and Human Services. As the lead health advisor, she works to coordinate, integrate, and implement early childhood health and development policies and initiatives across Head Start, child care, Race to the Top Early Learning Challenge, and Maternal, Infant, and Early Childhood Home Visiting programs. Dr. Beckmann received her Ph.D. in Developmental Psychology at Columbia University and focused on issues of toxic stress during pregnancy and later child outcomes. Michelle Esquivel is the director of the American Academy of Pediatrics Division of Children with Special Needs. She is also the director of the National Center for Medical Home Implementation, a cooperative agreement between the Academy and the Maternal and Child Health Bureau in the Health Resources and Services Administration. The Academy s Council on Children with Disabilities is housed in Michelle s division at the AAP. This Council is comprised of over 500 pediatricians interested in issues related to children with special health care needs. The Council provides oversight for AAP efforts related to early childhood screening including developmental and autism. Andy Imparato perspective and passion is informed not only through his professional career but also through his own experience with bipolar disorder. Imparato comes to AUCD from the position of Senior Counsel and Disability Policy Director for the U.S. Senate Committee on Health, Education, Labor, and Pensions, chaired by Senator Tom Harkin of Iowa. In the last two and a half years, Imparato has been the lead staffer for Chairman Harkin's effort to reauthorize the Rehabilitation Act as part of the Workforce Investment Act; to expand the number of people with disabilities working in integrated, competitive employment; to improve accessibility of taxicabs, movie theaters, airplanes, and electronic and information technology; and to improve transition outcomes for the generation of young people with disabilities who have come of age since the passage of the Americans with Disabilities Act.

Presenters Dr. Jennifer Johnson is Director of the Office of Program Support at the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, U.S. Department of Health and Human Services. This Office is responsible for the coordination, oversight, management and evaluation of three national grant programs authorized under the Developmental Disabilities Assistance and Bill of Rights Act of 2000: The State Councils on Developmental Disabilities, the Protection and Advocacy Systems, and the University Centers for Excellence in Developmental Disabilities grant programs. Prior to joining AIDD, Dr. Johnson worked at The George Washington University on a variety special projects, including those related to the National Board for Professional Teaching Standards. D. Camille Smith, M.S., Ed.S. is an Educational Psychologist with the Learn the Signs Act Early Campaign, National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC) in Atlanta. She is currently working on a campaign that aims to increase early identification of children with developmental delay by improving parents awareness of early development, and increasing healthcare and childcare provider awareness of the importance of developmental screening. Her research interests include the study of caregiver/child interactions, improving child developmental outcomes through programs designed to influence parenting behavior, and the social determinants of health. Dr. Bonnie Strickland is the Director of the Division of Services for Children with Special Healthcare Needs (DSCSHN) in the Health Resources and Services Administration s (HRSA) Maternal and Child Health Bureau (MCHB). The Division provides national leadership for programs serving all children, youth, and adults with special health care needs, and facilitates the development of comprehensive community-based systems of services by assuring: (1) family professional partnership and cultural competence,(2) access to care through the medical home, (3) early and continuous screening (4) appropriate financing for health and related services, (5) community service integration, and (6) transition to adult health care, work, and independence. This systems framework also supports a national system of programs designed to improve access to newborn screening and genetic services.

http://sixbyfifteen.org/

Birth to Five: Watch Me Thrive! Developmental and Behavioral Screening and Support Katherine Beckmann, PhD, MPH Office of the Deputy Assistant Secretary and Interdepartmental Liaison for Early Childhood Administration for Children and Families

The Partners 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 Eunice Kennedy Shriver National Institute for Child Health and Human Development Substance Abuse and Mental Health Services Administration Office of Special Education Programs, Department of Education

Birth to Five: Watch Me Thrive! Coordinated campaign to promote awareness of child development and developmental and behavioral screening, referral, and follow-up. Celebrating developmental milestones Promoting universal developmental and behavioral screening Improving early detection Enhancing developmental supports

Birth to Five: Watch Me Thrive! Toolkit 1. A compendium that reviews implementation, reliability and validity characteristics of screening instruments 2. User guides, designed for providers from multiple sectors and the communities in which they live 3. Collection of resources to bring awareness to parents and providers about healthy child development

Birth to Five: Watch Me Thrive! Compendium First line screening instruments for children, birth to 5 years Pertinent information includes cost, administration time, quality level, training required, and age range covered Reference for early care and education providers, pediatricians, home visitors, child welfare case workers, mental health professionals, early intervention specialists, and various others

Birth to Five: Watch Me Thrive! User Guides Early Care and Education Providers Early Intervention Service and Early Childhood Special Education Providers Families Primary Care Providers Communities Child Welfare Home Visitors Behavioral Health Providers Housing and Homeless Shelter Providers

Birth to Five: Watch Me Thrive! Resources Information on developmental milestones Every day tips for caregivers to promote healthy development Fact sheets on specific developmental disabilities or delays Milestone checklists and tracking tools Learning modules for providers Screening passport for families Guidance for finding help locally

Learn the Signs. Act Early. May 27, 2014 Camille Smith, M.S. Ed.S., Behavioral Scientist National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities, Prevention Research Branch

Learn the Signs. Act Early. Why this program? About 1 in 6 children aged 3-17 has a developmental disability 1 In the United States, about 1 in 68 children has an autism spectrum disorder 2 Median age of diagnosis 4 years (Autistic Disorder). 1. Boyle CA, Boulet S, Schieve LA, et al. Trends in the prevalence of developmental disabilities in U.S. children, 1997 2008. Pediatrics 2011;127:1034 42. 2. MMWR Surveillance Summaries March 28, 2014. Learn the Signs. Act Early. www.cdc.gov/actearly

Early Intervention Makes a Difference Early intervention services 3,4,5 (also called Part C or Birth-to-3 services) improve skills and outcomes increase school readiness enable families to develop strategies and obtain resources needed for successful family functioning 3 Landa, RJ, Kalb LG. Long-term Outcomes of Toddlers with Autism Spectrum Disorders Exposed to Short-term Intervention. Pediatrics. 2012; 130:Supplement 2 S186-S190; doi:10.1542/peds.2012-0900q 4 Rogers SJ, Estes A, Lord C, Vismara L, Winter J, Fitzpatrick A, Guo M, Dawson G. Effects of a Brief Early Start Denver Model (ESDM)-Based Parent Intervention on Toddlers at Risk for Autism Spectrum Disorders: A Randomized Controlled Trial. J Am Acad Child Adolesc Psychiatry. 2012 Oct;51(10):1052-65. doi: 10.1016/j.jaac.2012.08.003. Epub 2012 Aug 28. 5 Dawson, G. (2008). Early behavioral interventions, brain plasticity, and the prevention of autism spectrum disorder. Developmental Psychopathology, 20, 775-803. Learn the Signs. Act Early. www.cdc.gov/actearly

Learn the Signs. Act Early. Learn the Signs: Resources for monitoring key developmental milestones and red flags that can indicate concern Act Early: Discuss Concerns Provide positive parenting tips Encourage Developmental Screening Refer for evaluation and services Find resources for early intervention and family support 18

How CDC Helps Families and Providers Learn the Signs and Act Early Health Education To help families learn the signs of healthy development and understand when and how to act early Act Early Initiatives To improve communication and coordination among systems that must work together to identify and care for children with disabilities Research and Evaluation To refine our efforts and identify promising practices for improving early identification and access to care Learn the Signs. Act Early. www.cdc.gov/actearly

Some LTSAE Partners ACF Offices of Head Start and Child Care Home visiting programs American Academy of Pediatrics Association of Maternal and Child Health Programs Child Care Aware USDA, WIC, Cooperative Extension YMCA What to Expect When You re Expecting SAMHSA/Project LAUNCH Learn the Signs. Act Early. www.cdc.gov/actearly

Learn the Signs. Act Early. www.cdc.gov/actearly

Learn the Signs. Act Early. Materials Parent-tested materials focused on milestones, when to act early, what to do if concerned: www.cdc.gov/actearly Research-based, audience-tested Parent-friendly Written in plain language Reproducible (no copyright) Easily customizable Available in Spanish (and a few in other languages) Available to print immediately (most) Popular!! Learn the Signs. Act Early. www.cdc.gov/actearly

Amazing Me It s Busy Being 3! Children s book Milestones highlighted throughout story Parent section includes 3-year-old milestones, tips, when to act early Families and children love the story of a day in the life of Joey as a 3 year old Learn the Signs. Act Early. www.cdc.gov/actearly

Watch Me! Celebrating Milestones and Sharing Concerns Free, one hour on-line training Four modules: Your Important Role in Monitoring Children s Development Understanding Children s Developmental Milestones Objective and Engaged Developmental Monitoring How to Talk with Parents about their Child s Development Continuing Education Credits Available (also free) Interactive and engaging Learn the Signs. Act Early. www.cdc.gov/actearly

Act Early Ambassadors Community champions to increase awareness activities and improve early identification practices Serve as state or territory point-of-contact for the national LTSAE program - they can help you Learn the Signs. Act Early. www.cdc.gov/actearly

THANK YOU! Thank you for all your hard work in helping to safeguard the healthy growth and development of our nation s children - we look forward to helping you with this most important mission! Visit: www.cdc.gov/actearly Learn the Signs. Act Early. www.cdc.gov/actearly

Health Resources and Services Administration (HRSA) State Title V and Children with Special Health Care Needs Programs; Association of Maternal and Child Health Programs(AMCHP) HRSA/MCHB grant programs: Maternal, Infant, and Early Childhood Home Visiting, Early Childhood Comprehensive Systems, Family-to-Family Health Information Centers, National Resource Centers for CSHCN, MCH Workforce Development Training programs.

Overview of American Academy of Pediatrics Initiatives: Developmental Surveillance and Screening, Autism Spectrum Disorders Michelle Esquivel, MPH Director, Division of Children with Special Needs American Academy of Pediatrics

Medical Home Definition. Primary care, quality care Family-centered Partnership Community-based interdisciplinary, team-based approach to care Care that is: accessible, family-centered, coordinated, compassionate, continuous and culturally effective Preventive, acute and chronic care

Screening in the context of the medical home. Partnership with families Anticipatory guidance Screening, evaluation and management Referrals for support and linkages with appropriate services and systems Care coordination, co-management

What we know. Higher rates of screening in pediatric offices.but what else is needed? Earlier identification Improved systems of referral and follow up to and from community services Increased biomedical evaluation of children identified with developmental disorders, including autism And.Pediatric Measurement Center of Excellence (PMCoE) Project Developmental Screening & Follow-up (Agency for Healthcare Research and Quality, Pediatric Quality Measures Program)

Part I: Developmental Screening, Surveillance

AAP Policy: Developmental Surveillance & Screening (DSS) Pediatrics, July 2006; Reaffirmed December 2009

DSS Policy Goals Increase identification of children with developmental disorders Improve surveillance and screening Develop specific clinical guidance & an algorithm Eliminate barriers Improve medical assessment Recommendations Developmental surveillance Every well-child visit Developmental screening using a standardized screening tool 9, 18, and 30 months When concern is expressed Autism screening 18 (and 24) months Note: These recommendations were subsequently included in the Bright Futures Recommendations for Preventive Pediatric Health Care

Council on Children With Disabilities et al. Pediatrics 2006;118:405-420

Developmental Surveillance and Screening Policy Implementation Project (D-PIP) Assessed the degree 17 pediatric primary care practices could implement recommendations for developmental screening and referrals Overall, the D-PIP uncovered that practices successfully implemented AAP developmental screening recommendations, but were less successful in placing and tracking referrals More attention needs to be paid to the referral process, and many practices may require separate implementation systems for screening and referrals King TM, et al. Pediatrics. 2010 Feb;125(2):350-60. Epub 2010 Jan 25. Implementing developmental screening and referrals: lessons learned from a national project.

Bright Futures Preventive Services Implementation Project (Jan-Oct 2011) Bright Futures Preventive Service Performed Before and After Comparisons Using the Practice (n=20) as the Unit of Analysis 100 Nine month olds Two year olds 80 60 40 20 0 Initial Final *Three of five Bright Futures priorities were used for anticipatory guidance delivery **Bright Futures PSS is a summed score of all preventive services, each service is a value of 1.

Trends in the Use of Standardized Tools: 2002-2009 AAP Periodic Survey 2002 2009 p Always/almost always use 1 formal screening tool 23.0% 47.7%.000 Screening Tools used Ages & Stages 7.3% 22.4%.000 PEDS 2.4% 15.9%.000 MCHAT - 10.8%.000 Radecki, et al, Pediatrics 2011

Part II: Autism Spectrum Disorders

AAP Policy: Autism Spectrum Disorders (ASDs) Pediatrics, November 2007; Reaffirmed September 2010

ASD Screening Guidance AAP recommends screening for ASDs at 18 and 24 months of age Visit at 30 months of age suggested Regression occurs in 25-30% of children with ASDs between 15 and 24 months Routine developmental screening is recommended at 9, 18, and 30 months Ongoing surveillance is necessary even with screening

Clinician Resources Autism: Caring for Children with Autism Spectrum Disorders: A Resource for Clinicians (2008; 2 nd ed. 2012) [Includes clinical fact sheets, family handouts (also in Spanish), and screening tools] Clinical Reports on Identification, Evaluation & Management of ASDs (Pediatrics, 2007; Reaffirmed 2010) Speaking points for AAP Members (eg, recent study findings, increased prevalence) via MyAAP Website: www.aap.org/autism

Family Resources Autism Spectrum Disorders: What Every Parent Needs to Know Parent Book Is Your Toddler Communicating With You? Brochure Understanding ASDs Booklet Sound Advice on Autism Audio Series for Parents www.healthychildren.org

DSS & ASD: Education & Implementation Efforts Education sessions presented at AAP NCE each year Clinical guidance integrated into Practical Pediatrics, DB:PREP Courses and Learn the Signs. Act Early. (CDC) AAP-endorsed CDC Autism Case Training curriculum NASHP: Assuring Better Child Health & Development (ABCD) programs used DSS recommendations Screening efforts expanding to child care workers Presentations at national conferences including PAS Webinars presented with CDC, MCHB, and other partners

Federal and National Collaboration CDC: Early Identification Training for Early Educators Federal Interagency Group on Developmental Screening; developed Birth to 5: Watch Me Thrive! PMCoE Project (focus on follow up) Building Bridges (home visiting) Bright Futures Head Start National Center on Health

AAP DSS & ASD Initiatives Further integration of screening into the medical home; enhanced linkages from other sources of care, agencies, etc, back to the medical home DSS policy statement & algorithm under revision ASD clinical reports & algorithm under revision Continue diverse educational programming Develop new and enhance current external partnerships

Questions? Contact Michelle Esquivel 800-433-9016, extension 4989 mesquivel@aap.org

Q & A How to Ask a Question You can ask a question by pressing the then # key to request the floor. Questions will be answered in the order they are received. Type your questions into the Chat box below the slides and the moderator will read the questions. 50

Questions How can EIEC work with the HRSA funded grant programs to coordinate implementation of Birth to 5: Watch Me Thrive! Does HRSA have a mechanism to monitor the implementation of Birth to 5: Watch Me Thrive! in the healthcare setting? How can the Family to Family Health Information Centers be utilized to coordinate an awareness campaign among families? How are you integrating developmental monitoring and developmental screening into community programs such as child care, home visiting and public health programs like WIC?

THANK YOU! Visit the Websites AUCD Website: http://www.aucd.org EIEC SIG Website: http://www.aucd.org/eiec Questions about the EIEC SIG? EIEC SIG Co-Chairs Mary Beth Bruder: bruder@uchc.edu Corry Robinson: Cordelia.Rosenberg@ucdenver.edu Questions about the Webinar? Anna Costalas: acostalas@aucd.org Please take a few minutes to complete our survey! 52