MA Act Early State Team

Updates- April 2017

Roula Choueiri, MD
Chief, Division of Developmental & Behavioral Pediatrics
Neurodevelopmental Disabilities pediatrician
CDC Act Early Ambassador to MA
MA Act Early Interim State Team Leader
 MA Act Early state Team
Who are we?
• Established in April 2010
• Elaine Gabovitch, MPA: Team leader and CDC
Ambassador 2010-2016
• Includes 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
Structure
• An executive steering committee of 12-16 members
• Initial structure included 3 former task forces:
– Training
– Outreach
– Early Diagnosis and New Models
• Steering committee meets quarterly
• State team meets once or twice per year at summit
meetings
 MA Act Early vision & mission
* Screening early * Screen often * Screen all *
• Vision
The 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.

• Mission
Massachusetts 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 goals
1. Conduct outreach to parents and providers to increase public awareness of
healthy developmental milestones, as well as signs of developmental
disorders including autism spectrum disorder

2. Increase training for health care, early childhood, and elementary

educational professionals

3. 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 practices
Background Definitions
 Background: Definitions
• Neurodevelopmental Delays and Disorders (NDD)
– Language delay
– Motor delay
– Global developmental delay
– Cognitive deficits
– Autism
– Cerebral palsy
– Learning disorders, ADHD…

• Autism Spectrum Disorder (ASD)

– Delay in social communication skills
– Repetitive behaviors, interests
Average age of diagnosis Special populations
• Autistic Disorder: Prevalence increases -race/ethnicity
4 years, 0 months • White, non-Hispanic, 70%
• ASD/PDD: • 12 per 1,000

4 years, 5 months • Black, non-Hispanic, 91%

• 10.2 per 1,000
• Asperger syndrome:
• Hispanic, 110%
6 years, 3 months • 7.9 per 1,000
 Developmental Screening of Refugees
(Kroening et al; Pediatrics, 2016)
• Buthanese-Nepali, Burmese, Iraqi & Somali refugees
• No word for “development” in their language and unaware of developmental
milestones
• Standardized screening was supported
Perceived barriers to identification of delays:
– limited education
– Poor healthcare knowledge
– Language
– Traditional healing practices
Facilitators:
– Community navigators
– Trust in healthcare providers
– In-person interpretation
– Visual supports
– Education about child development
 Who screens children for NDD and/or Autism?
• American Academy of Pediatrics recommends developmental
surveillance at each well child visit and periodic screening

• Autism screening recommended to all at 18 and 24 months if no

concerns otherwise

• 1/4 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
 Access
• Nationwide shortage of
diagnosticians

• Long wait times for

identification at a critical age of
brain development

• Access is much more

challenging for lower income
and culturally diverse families

• Need to think of new models

CDC and MA Act Early Campaigns
CDC Act Early Website and material
www.cdc.gov/actearly
Material for developmental surveillance and
monitoring
MA Act Early State Team
Current Projects
1- Training Healthcare Providers and
Early Childhood Providers

• Grant 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

 Background
Worcester 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

 MA Act Early activities in Worcester

• Distributed and provided training on the “ Learn the Signs Act

Early” material in Worcester:

• Pediatric clinics at UMass Children’s Hospital

• Harding Pediatrics
• Family Health Practice
• WIC in Worcester
• Headstart on Mill Street
2- Create new models to improve Early
identification of ASD and diagnosis
 Current Screening Methods for ASD
• Level 1 or universal screen such as the MCHAT-R:
• Very good at picking up children who need more workup
• High false positive for ASD

• Level 2 – Disorder-specific screener

• Differentiates between ASD and other delays
• Referrals for ASD evaluations more appropriate

Interactive Level 2 ASD screeners preferred to

questionnaires
Triggers atypical behaviors
 Two-Level ASD Screening Model

Risk
ASD+
Level 2 ++

Risk for Developmental

Delays/ASD
Level 1
Well Child Visits or high risk (ex: Early
Intervention)
 Current Interactive Level 2 ASD screeners
STAT: Screening for Autism in
Toddlers
• 20 minutes to administer
• Difficult training
• Good psychometrics for 2-3 y
old
• Less good for < 2y
• Misses mild to moderate
forms of ASD
• High Costs
RITA-T: Rapid Interactive Screening
Test for Autism in Toddlers
• 5-10 minutes to administer
• Reliable training in 3 hours
• Good psychometrics for 18-39
months
• Training and access to be
accessible
DESCRIPTION of the RITA-T
@Tufts @UMassMed
 Early Intervention Replication Study
The THOM Early Intervention program in Worcester:
- EI providers all trained on the MCHAT-R
- Four EI providers from START program trained reliably on the
RITA-T
- All toddlers enrolled in EI program receive MCHAT-R
- Those with concerns on MCHAT R/F are administered the RITA-T
- They are then referred to study diagnostic team in DBP at
UMass in Worcester:
- Standard Autism and Developmental testing
- Provided letter for diagnoses and follow up

- Wait time from EI study program to diagnosis: within 6 weeks

24
 RESULTS of the pilot with EI
• Between February 2016 and June 2016:
– 68 toddlers enrolled: Non ASD in 13; ASD in 55
– Wait time: within 6 weeks

• Females: 15 and Males: 53

• Average age: 29.91 months (19-36 months)

• Pilot to continue in May 2017 and include MCHAT-R

negative sample as well.
 Future steps: RITA-T
http://www.umassmed.edu/AutismRITA-T/rita-t/

• Developing Training
Website

• Training system on line with

CME/CEU

• Test will be available in

public domain at low costs
 Future steps: Two Level screening Models
• Continue 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 Center
• Train Pediatric Residents on the RITA-T
• All 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
3- Outreach and train culturally diverse
families and providers
 We need your help! Coming this fall to Cable TV
1, 2, 3, Grow!

 Cable TV series broadcast across • How to monitor a child’s

state in 8 cultures/languages: development
 English – At ages 1, 2 & 3
 Spanish
– 4 domains: Movement, social,
 Arabic
communication, thinking
 Brazilian Portuguese
• What to do when concerned
 Chinese
 Haitian Creole • Where to find local resources
 Vietnamese to help
 African-American (English)
 Please help us promote 1, 2, 3, Grow!
When you receive our email announcement this summer & fall, please
contact your local cable station to request these shows.
• Includes:
• Program hosts & pediatric
specialists sharing info in languages
and cultures
• Short videos showing milestones
• Taped parent interviews sharing
stories of what they did when
concerned
• Places to contact for help
• Materials in 7 languages:
– Tracking Milestones Brochure
– Milestones Checklists
• Archived on YouTube and MA Act
Early partner web sites – yours?
MA Act Early State Team
www.MAActEarly.org
• Culturally competent autism
screening guide
• M-CHAT in 5 languages
• Disseminated to 200
members of MA AAP and 55
executive directors of
community health centers
• Posted for use in public
domain
MA Act Early State Team
Website & Facebook page
www.maactearly.org
 MA Act Early State Team
Future Steps
New members, new initiatives, new
ideas
In person, form, survey
Regional Committees:
• Ex.: Replicate the work from
Worcester: train, and partner
early childhood programs in
community with diagnostic
centers
• Regional Training Committees:
train the trainers on LTSAE; two
level Screening model
Communication/Social media
Committee