Roula Choueiri MD Chief Division of Developmental amp Behavioral Pediatrics Neurodevelopmental Disabilities pediatrician CDC Act Early Ambassador to MA MA Act Early Interim State Team Leader ID: 931697
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MA Act Early State TeamUpdates- April 2017Roula Choueiri, MD Chief, Division of Developmental & Behavioral PediatricsNeurodevelopmental Disabilities pediatricianCDC Act Early Ambassador to MAMA Act Early Interim State Team Leader
Slide2Established in April 2010 Elaine Gabovitch, MPA: Team leader and CDC Ambassador 2010-2016Includes 30-50 active state team members from different backgrounds and training, all involved in early childhood: screening, intervention, research, policy, advocacy, training and parents. Listserv of 169 emails…MA Act Early state Team Who are we?
Slide3MA Act Early State TeamStructureAn executive steering committee of 12-16 membersInitial structure included 3 former task forces:TrainingOutreachEarly Diagnosis and New ModelsSteering committee meets quarterlyState team meets once or twice per year at summit meetings
Slide4* Screening early * Screen often * Screen all *VisionThe Massachusetts Act Early Coalition works to strengthen state and community systems for the early identification and intervention for children with signs of developmental disabilities, such as autism spectrum disorders. The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth.MissionMassachusetts Act Early aims to educate parents and professionals about healthy childhood development, early warning signs of developmental disorders including autism spectrum disorder, the importance of routine developmental screening, and timely early intervention whenever there is a concern. MA Act Early vision & mission
Slide51. Conduct outreach to parents and providers to increase public awareness of healthy developmental milestones, as well as signs of developmental disorders including autism spectrum disorder2. Increase training for health care, early childhood, and elementary educational professionals3. Shorten the wait times between screening and diagnosis as well as diagnosis and intervention 4. Develop culturally competent autism screening materials and training curricula for early childhood and elementary educators, clinicians, community health centers and pediatric practicesMA Act Early goals
Slide6Background Definitions
Slide7Background: DefinitionsNeurodevelopmental Delays and Disorders (NDD)Language delayMotor delayGlobal developmental delayCognitive deficitsAutismCerebral palsyLearning disorders, ADHD…Autism Spectrum Disorder (ASD)Delay in social communication skillsRepetitive behaviors, interests
Slide8Average age of diagnosisAutistic Disorder: 4 years, 0 monthsASD/PDD: 4 years, 5 monthsAsperger syndrome:
6 years, 3 months
Special populations
Prevalence increases -race/ethnicity
White, non-Hispanic, 70%
12 per 1,000
Black, non-Hispanic, 91%
10.2 per 1,000
Hispanic, 110%
7.9 per 1,000
Slide9Developmental Screening of Refugees(Kroening et al; Pediatrics, 2016)Buthanese-Nepali, Burmese, Iraqi & Somali refugeesNo word for “development” in their language and unaware of developmental milestonesStandardized screening was supportedPerceived barriers to identification of delays:limited educationPoor healthcare knowledgeLanguageTraditional healing practicesFacilitators:Community navigatorsTrust in healthcare providersIn-person interpretationVisual supports
Education about child development
Slide10Who screens children for NDD and/or Autism?American Academy of Pediatrics recommends developmental surveillance at each well child visit and periodic screeningAutism screening recommended to all at 18 and 24 months if no concerns otherwise1/4 underserved low income children not receiving special education services when they need it (Nelson, Acta Pediatrics 2013) Focus on training other providers : early childhood providers (Headstart, WIC) for developmental surveillance and monitoring
Slide11AccessNationwide shortage of diagnosticiansLong wait times for identification at a critical age of brain developmentAccess is much more challenging for lower income and culturally diverse families Need to think of new models
Slide12CDC and MA Act Early Campaigns
Slide13CDC Act Early Website and materialwww.cdc.gov/actearly
Slide14Material for developmental surveillance and monitoring
Slide15MA Act Early State TeamCurrent Projects
Slide161- Training Healthcare Providers and Early Childhood ProvidersGrant from the Fairlawn Foundation for the training of Early Childhood Providers in Worcester on Neurodevelopmental Disabilities screening and Autism screening and to connect providers to a diagnostic center Trainings in South Eastern MA, Western MA
Slide17BackgroundWorcester population Census 2010: 6.56% population is under 5 years (11,874)Residents below poverty level 17. 9% (state: 9.3%)White alone 87.5% Hispanic 10.5% Black alone 5.3% Asian alone 4.7%Two or more races 2%American Indian alone 0.4%Other race alone 0.1%Since 2000, the number of households speaking a language other than English increased by 20.6 %
More than 2000 refugees since 2007
Slide18MA Act Early activities in WorcesterDistributed and provided training on the “ Learn the Signs Act Early” material in Worcester:Pediatric clinics at UMass Children’s HospitalHarding PediatricsFamily Health PracticeWIC in WorcesterHeadstart on Mill Street
Slide192- Create new models to improve Early identification of ASD and diagnosis
Slide20Current Screening Methods for ASDLevel 1 or universal screen such as the MCHAT-R: Very good at picking up children who need more workup High false positive for ASDLevel 2 – Disorder-specific screener
Differentiates between ASD and other delays Referrals for ASD evaluations more appropriate
Interactive Level 2
ASD screeners preferred to questionnaires
T
riggers atypical behaviors
Slide21Two-Level ASD Screening Model
Level 1
Level 2
Slide22Current Interactive Level 2 ASD screenersSTAT: Screening for Autism in Toddlers20 minutes to administerDifficult trainingGood psychometrics for 2-3 y oldLess good for < 2yMisses mild to moderate forms of ASDHigh CostsRITA-T: Rapid Interactive Screening Test for Autism in Toddlers5-10 minutes to administerReliable training in 3 hoursGood psychometrics for 18-39 monthsTraining and access to be accessible
Slide23DESCRIPTION of the RITA-T @Tufts @UMassMed
Slide24Early Intervention Replication StudyThe THOM Early Intervention program in Worcester:EI providers all trained on the MCHAT-RFour EI providers from START program trained reliably on the RITA-TAll toddlers enrolled in EI program receive MCHAT-RThose with concerns on MCHAT R/F are administered the RITA-TThey are then referred to study diagnostic team in DBP at UMass in Worcester:Standard Autism and Developmental testingProvided letter for diagnoses and follow up
Wait time from EI study program to diagnosis: within 6 weeks
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Slide25RESULTS of the pilot with EIBetween February 2016 and June 2016: 68 toddlers enrolled: Non ASD in 13; ASD in 55Wait time: within 6 weeksFemales: 15 and Males: 53Average age: 29.91 months (19-36 months)Pilot to continue in May 2017 and include MCHAT-R negative sample as well.
Slide26Future steps: RITA-Thttp://www.umassmed.edu/AutismRITA-T/rita-t/Developing Training WebsiteTraining system on line with CME/CEUTest will be available in public domain at low costs
Slide27Future steps: Two Level screening ModelsContinue to collect data from EI/DBP project Pilot with other programs/practices Training pediatric practices on the RITA-T (Harding Pediatrics; Fitchburg Pediatrics; Heywood pediatrics) and team 4 at the Family Health CenterTrain Pediatric Residents on the RITA-TAll DBP clinicians will see patients from this pathway and establish a program for fast track where MCHAT/RITA-T administered
Can generalize then model
Continue to train on the LSAE and integrate in early childhood settings
Slide283- Outreach and train culturally diverse families and providers
Slide29We need your help! Coming this fall to Cable TV 1, 2, 3, Grow! How to monitor a child’s development
At ages 1, 2 & 34 domains: Movement, social, communication, thinking
What to do when concernedWhere to find local resources to help
Cable TV series broadcast across state in 8 cultures/languages:
English
Spanish
Arabic
Brazilian Portuguese
Chinese
Haitian Creole
Vietnamese
African-American (English)
Slide30Please help us promote 1, 2, 3, Grow! Includes:Program hosts & pediatric specialists sharing info in languages and culturesShort videos showing milestonesTaped parent interviews sharing stories of what they did when concerned
Places to contact for helpMaterials in 7 languages:Tracking Milestones Brochure
Milestones ChecklistsArchived on YouTube and MA Act Early partner web sites – yours?
When you receive our email announcement this summer & fall, please contact your local cable station to request these shows.
Slide31MA Act Early State Teamwww.MAActEarly.org
Culturally competent autism screening guideM-CHAT in 5 languagesDisseminated to 200 members of MA AAP and 55 executive directors of community health centers
Posted for use in public domain
Slide32MA Act Early State TeamWebsite & Facebook pagewww.maactearly.org
Slide33MA Act Early State TeamFuture StepsNew members, new initiatives, new ideasIn person, form, surveyRegional Committees: Ex.: Replicate the work from Worcester: train, and partner early childhood programs in community with diagnostic centersRegional Training Committees: train the trainers on LTSAE; two level Screening modelCommunication/Social media Committee