Collaborative Developmental Screening

Prince Georges County Special Needs Physician Support ProgramAbila Tazanu, M.D.

Pediatrician and Mother of children with Autism

Education Credits Sponsored by

Health Services for Children with Special Needs, Inc.

Faculty Disclosure Information

• In the past 12 months, I have had no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME activity.

• I do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.

Adapted from a presentation created by Virginia Keane, MD

Associate Professor of Pediatrics University of Maryland School of Medicine

Former President, Maryland Chapter, American Academy of Pediatrics

Jamie Perry, MD, Office of Genetics and Special Health Care Needs,

Marti Grant, RN, MA, Chief, Division Healthy KidsPaul Lipkin, MD, Kennedy Kreiger Institute

Tracey King,MD, Johns Hopkins Department of PediatricsPathfinders for Autism

Parents Place of MarylandWith Support from the Maryland Office of Maternal Child

Healthand the Federal Bureau of Maternal Child Health

Happy Autism Awareness Month!Happy Minority Healthcare Disparity Month!

Presentation Goals Highlight the importance of early identification and the

role we all play in this process

Distinguish between Surveillance and Screening.

Highlight the importance of Screening.

Making the case for Collaboration based on Prince George’s County data and outcomes

Give insight into sharing the results of screening between professionals

Discuss the importance of appropriate and timely referrals

My Story

Collaboration did not exist in the identification of my children!

Child

Family

Healthcare Professional

Early Childhood

Professionall

OWCA History

Our organization started as a coalition of parents, medical providers, educators, and therapists who initially met in November of 2007.

Our goal was to create an initiative to improve the lives of those diagnosed with autism in our county.

Our coalition was awarded a grant from the American Academy of Pediatrics to successfully plan a Center of Excellence for autism in our county in December 2007.

OWCA History

In 2008, we conducted needs assessments throughout Prince Georges County to determine the services and programs that would be most beneficial to those living with autism in our community and became a non-profit entity.

In 2009, we finalized the services and programs that we would develop for the greater than 1100 children, adolescents and their families affected by autism in Prince Georges County at that time.

In 2010, we acquired a dedicated space of our own from which we are currently providing services through the generosity of the Prince George’s County School System.

OWCA HistoryIn 2017, we acquired a new family friendly centrally located

space from which to support those living with ASD.

We also celebrated our 10 year anniversary!

OWCA is a non-profit organization whose MISSION is to link individuals living with autism in Prince George’s County and neighboring

communities to their world in an all-embracing manner through the following services:

Family Support

Community Awareness

Individual

Support

OWCA’s Mission and History

Our VISION is to create a world of genuine acceptance where individuals and families living with autism realize their greatest sense of wellbeing and achieve their highest potential in their

community.

Family Support

Community Awareness

Individual

Support

OWCA’s Vision: IMPACT

Why do we care?❖We care because we are the faces of autism. Our

board members are parents, providers, and individuals who have a passion for helping those

living with autism.

❖We understand that autism is a unique developmental disability, that is not well understood

and challenging to treat.

❖We believe that there is hope for those living with autism, when there is access to knowledge, support,

and quality multi-disciplinary interventions.

The Importance of Early Identification and our Roles in this Process

Child

Family

Healthcare Professional

Childcare Professional

Children are cared for invarious settings

Each setting is a “home” with a unique view of a child and a unique responsibility for a child.

But we all have a common goal: Ensuring that a child reaches his or her maximal potential. This is only achieved when children are thriving in all areas of development.

Homes + Child = Countless Brighter Tomorrows

I am a

Family member…

You are a member of Home # 1-

The Family Home.

I am a Health Care Provider…

You are a member of Home #2-

The Medical Home.

I am an

Childcare Professional…

You are a member of Home #3-

The Educational Home.

This is every child's primary place of residence; but more importantly, this home lays the foundation for a child's physical and emotional development. It a place where a child is nurtured and loved unconditionally.

This is a primary health care setting that is family centered and compassionate. This home identifies delays in development, refers for diagnostic and medical evalutions, and provides the coordination of the medical and non mediclal care that a child needs in the partnership with families to help a child reach his or her maximum potential.

This is the environment of early learning for a child. It can exist in the family home, a childcare setting, and/ or formal educational setting. This home provides a stimulating setting for cognitive, social, language, and motor development and recognizes delays in these areas. *For children with identified developmental delays, this home consist of early interventon specialists that provide developmental therapies, offer family support services, and provde care coordination.

Home is

Our different perspectives when shared with the common goal of ensuring healthy development is the reason why early identification is so critical to the success of our children , their families, and ultimately the community at large!

The Importance of Early intervention:First three years of life are critical to brain development

Model

Early Identification

Early ActionAssessment and Treatment

Improved OutcomesDevelopment, Behavior, School Readiness, School completion

Connections = Development Early intervention allows us to capitalize on a period of

time when the brain is actively forming critical connections in all areas of development.

Growth of Brain

200

400

600

800

1000

1200

1400

1600

Conception 5 10 15 20

Conception to BirthBirth to Age 20Birth

Source: A.N. Schore, Affect Regulation and the Origin of the Self, 1994.

3

Whole

Bra

in W

eig

ht

in G

ram

s

Distinguishing between Surveillance and Screening. We all have a unique perspective on development

which is based on our education and experience with children.

We all have used this to recognize when development seems abnormal.

This is called Surveillance.

What is Developmental Surveillance? Surveillance:

Flexible, longitudinal, continuous and cumulative process whereby knowledgeable professionals

identify children who may have developmental problems. (AAP 2006)

Continuous

Developmental Surveillance

The Challenge with Surveillance:

It is Subjective and Variable

Screening: Standardizing the View on Development Allowing all of our perspectives to be filtered through

one lens.

What is Developmental Screening? Screening:

Administration of a brief standardized screening tool to aid in the identification of children at risk of a

developmental disorder. (AAP 2006)

PeriodicRemember that screening only identifies the risk for

developmental disorders. It does not diagnose developmental disorders.

AAP Recommendations:Developmental ScreeningAutism Screening

Surveillance

9 18 24 24-30

Why Do Developmental Screening? Developmental delays /disabilities affect up to 10% of all

children

Many delays are subtle and may not be picked up by surveillance Speech and Language delay: 5-10/100

Global delay 2-3/100

Autism 1/68

Intellectual disability (MR) 2-3/100

Many parents report having their developmental concerns but not addressed

Early intervention can make a difference, especially with the subtle delays.

Developmental Screening in Maryland A little Maryland history

Until 1997 Medicaid/Healthy Kids/EPSDT required screening using the DDST (Denver) for all well child visits 6 months to 6 years

Maryland did away with this requirement when Medicaid Managed Care was implemented in 1997

A 2005 focus group study revealed that Maryland pediatricians were evaluating development but not using a standardized screening tool Personal judgment Milestones on the EPSDT forms Parents did not perceive that development had

been assessed and parents reported significant lag between when they raised a concern and when evaluation occured.

What is the data on National Developmental Screening?

What is the data on National Developmental Screening?

Prince George’s County Providers in PGSNIPS

48%

77%

73%

52%

23%

27%

43%

45%

56%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

FY14

FY 15

FY 16

Changes in Developmental Screening

Percentage of enrolled providers surveyed no yes

July 2016 -Total of 143 enrolled providers

Maryland- Thinking Ahead! As a state we recognize the expertise of all of those

who play a critical role in the development of our children.

It is now a mandate for Healthcare providers to screen all children with public health insurance in Maryland.

Maryland attempted to mandate Childcare Providers to screen children for abnormal development. This legislation did not pass.

Failed legislation should not deter Healthcare and

Childcare professionals in Prince George’s County from

collaborating to identify children with developmental

differences!

Healthcare Providers alone are not identifying children!

Our effort to collaborative is the beginning!

Prince George’s County Infants & Toddlers Program

One World Center for

Autism, Inc.

Maryland Behavioral

Health Integration in Pediatric

Primary Care

Prince

George’s

County

Health

Department

Health

Services for

Children

with Special

Needs, Inc.

PGCSNIPS Brings Local, State, and Nationwide Supports and Tools to Physician Offices

SNIPS Team

PGSNIPS TEAM

Health Department-

Data Management and Outreach Coordinator

PGCPS- Lead Agency

OWCA-

Outreach Nurse

Medical Consultant

Autism 101 Collaborative Screening

Healthcare Trainings

New Outreach Efforts-OBGYN’s and Birthing

Hospitals

Birth through FiveHelp Me Thrive

Campaign

OBGYN’s25

69New

providers

Steady Referrals now with continued Change in

Practice but decrease in

direct referrals!

Even though we are making significant impact, as a county we are still identifying children late, especially

children birth through 12 months of age.

Why? The missing link is the outreach and support of childcare providers in the same manner that we support our Healthcare providers to implement

developmental screening!

MSDE Data-Ages 3-21-Students with Disabilities Trend in High Growth Disabilities (2013)

Reasons-Better/ more specific diagnosis of other disabilities ?

Reality – Have to be strategic in identifying and serving this population

Disability 2003 2013 Difference Trend

Specific Learning Disabilities

40,648 30,876 (<10,000)

Emotional Disabilities

9,727 6,635 (<3,000)

Multiple Disabilities

5,475 4,335 approx. 1,000

Autism 4,084 10,211 (> 6,000)

Total State 113,780 102,702 (approx. 11,000)

MSDE Data-Students by Age and Disability-Autism (2013)

Ages # of Students with Autism

3-5 years 918 How can we IDENTIFY earlier and possibly change the trajectory of development?

6-11 years 4510 Almost 5x increase in identification-missing the window for early intervention. How can we SUPPORT better?

12-17 4010 How can we SUPPORT better?

18-21 773 How can we SUPPORT better?

MSDE Data-Number of Students in Nonpublic Schools by Disability(2013)

Disability # of Students State Rank

Emotional Disability 1,157 1st

Autism 1,118 2nd

Multiple Disabilities 495 3rd

Other Health Impaired 272 4th

Student with Emotional Health Challenges and Autism make up the majority of students supported in Most Restrictive Environments.

It is also critical to remember that Many students with Autism have co-morbid emotional health conditions and are also educated under the ED classification

as their primary disability

MSDE Data-Distribution of Students with Disabilities by Least Restrictive Environment (2013)

Ages-6-21 years # of Students in Prince George’ County

Percentage %

Inside Regular Education 80% or More

6,813 53.56%

Inside Regular Education 79-40%

1,133 8.91%

Inside Regular Education less than 40%

3,554 27.94%(highest in the state)

Separate Facilities 1,186 9.32%(highest in the state)

As a county we pay a significant price to support students outside of our walls!

Summary of the issues at hand…..➢Children and youth who are identified later often have more challenging behaviors and greater social, emotional and educational needs.

➢This translates to a greater need for highly trained educators and related service providers to support these children and youth.

➢Additionally, lack of community based -behavioral health supports for children and youth with autism leave families looking to their educational system for answers and help

➢This can lead to a breakdown in communication between families and their educational system, which create distrust of their child's educational supports

➢The End Result: STRESSED families and a STIGMATIZED school system

Who ultimately pays the price:

We all do!

1st Step -Strengthen Collaborative Identification- Current data

➢ 89% of parents of children and youth with autism mention

concerns about development prior to 36 months of age,

however the average age of diagnosis is 56 months which

is a tremendous barrier to receiving life-changing early

intervention

➢ There are significant disparities in the diagnosis of

minority children with autism when compared to their

white peers in Maryland and nationally

Prevalence by race

1/63- White, Caucasian

1/81- African American

1/93- Non-white Hispanic, Latino

See article on ASD diagnosis

in Minority Children

1st Step Identification – Key points for Prince George’s County

Given the racial demographics of our

County it is imperative that we collaborate on

identifying children with Autism earlier.

Nationally we are not only identifying minority

children later but we are also missing their

opportunity for early intervention or increasing the likelihood of missed or

misdiagnosis

Group Discussion

What do you think of County Outcomes?

What are your thoughts on developmental screening in your setting?

An Overview of Recommended General Developmental Screening Tools for Maryland

Health Care providers EPSDT- Top 2

Ages and Stages Questionnaire (ASQ)

Parents’ Evaluation of Developmental Status (PEDS)

Approved Tools for Childcare Professionals

ASQ-3

Best Beginnings

BRIGANCE®EarlyChildhood Screen III PRINT

Speed DIAL-4

Early Screening Inventory Revised 2008 Edition (ESIR

Using the most Common tool!

ASQ

Option: Ages & StagesAdvantages

Well-validated

One-time cost Unlimited duplication

Milestone/skill-based May facilitate

education

Options for parent administration or parent self-report

Waiting room/exam room

Disadvantages

Length 25-35 items, 5-6

pages (“5-6 min”)

Age-specific Logistics of correct

distribution

ASQ ScoringScoring instructions:

Yes = 10 pointsSometimes = 5 pointsNo = 0 points

Each section: 6 questions, so 60 points maximum

PASS = All domains normal (white areas)BORDERLINE = One borderline score (gray areas)

FAIL = One or more failed scores (black areas) or two or more borderline scores

Colaborative CommunicationWhat to Do with the Results? (AAP 2006)

When the results are normal:

When administered due to concerns or borderline

When results are concerning:

Developmental Screening: Normal Results (AAP 2006)

When the results are normal: Inform parents and continue with

other aspects of the preventive visit

Provides an opportunity to focus on developmental promotion

Communicate result to between professionals with parent permission.

Developmental Screening:Parental Concerns or Borderline (AAP 2006)

Schedule early return visit for additional surveillance, even if the screening tool results do not indicate a risk of delay

Communicate results between professionals with parent permission.

Developmental Screening: Failed Screen

Failed/abnormal/positive screen Refer immediately to Early Intervention

Refer for medical developmental diagnostic evaluation

Communicate result between professionals with parent permission.

The Importance of the Developmental / Medical Diagnostic Evaluation (AAP 2006)

Identifies the specific developmental disorder or disorders giving parents a greater understanding of their child’s disability

Identifies specific prognostic information

Provides genetic counseling around recurrence risk and family planning

Provides specific medical treatments for improved health and function of the child

Directs therapeutic intervention programming

9-12 month wait list

Prince Georges County Infants and Toddlers Program: Early Developmental Intervention/

Early Childhood Services Diagnosis not necessary for referral

A free program that provides early intervention services to support families of children with developmental delays. Parents learn strategies through modeling and coaching in the home and community (libraries, parks, gym, etc.).

Remember that Early Childhood services are geared at early intervention and family support. These services are not in lieu of a medical/ diagnostic evaluation.

30-45 day timeline

What type of early intervention services are provided by the Prince Georges Infants and Toddlers Program?

Multidisciplinary developmental evaluations to determine the need for interventions, such as: Educational group activities in

community settings

Special instruction

Physical therapy

Speech and Language therapy

Audiology and Vision Services

Occupational therapy

Make an appropriate referral to Early Intervention Services

Send a referral directly to the Infants and Toddler program

Keep in mind that many parents are given a number to contact Early childhood services but a large percentage do not follow up.

As childcare professionals/ providers, you can make direct referral to PGC Infant and Toddlers.

Attrition following decision to refer

100%

64%

40%

31%

0%

20%

40%

60%

80%

100%

referred referral received assessed eligible

% o

f c

hil

dre

n r

efe

rre

d

A Referral to consider:Project Win!

Service of the Prince George’s County Child Resource Center

Provides professional development for county childcare providers

Providers- both Healthcare and Childcare Professionals can make a referral for Early Childhood Mental Health Consultations within the childcare setting

Respond to referrals and request from Childcare professionals

Childcare/ Healthcare Information Exchange Form

Child

Family

Healthcare Professional

Childcare Professional

SUMMARY

Remember we may not have all of the

answers individually but together we can

create brighter tomorrows!

Additional Resources on Screening

For Childcare Professionals: Maryland Excels Prince Georges Child Resource Center Prince George’s County Infant and Toddlers Program http://mptchildcarecourses.thinkport.org/dev-screening-

tool-review-and-application-2.html

For Healthcare Providers: PGCSNIPS MDAAP Maryland Excels

Thank you!