Collaborative Developmental Screening Prince Georges County Special Needs Physician Support Program Abila 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 Kids Paul Lipkin, MD, Kennedy Kreiger Institute Tracey King,MD, Johns Hopkins Department of Pediatrics Pathfinders for Autism Parents Place of Maryland With Support from the Maryland Office of Maternal Child Health and 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! Family Child Early Childhood Professionall Healthcare Professional
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 History In 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 s Mission and History OWCA is a non-profit organization whose MISSIONis 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 Individual Support Community Awareness
OWCA s Vision: IMPACT 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 Individual Support Community Awareness
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 Family Child Childcare Professional Healthcare Professional
Children are cared for in various 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 I am a I am an Family member You are a member of Home # 1- The Family Home. Health Care Provider You are a member of Home #2- The Medical Home. 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 Home a place is 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.
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 Action Assessment and Treatment Improved Outcomes Development, 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.
Whole Brain Weight in Grams Source: A.N. Schore, Affect Regulation and the Origin of the Self, 1994. 1600 Growth of Brain 1400 1200 1000 Conception to Birth Birth to Age 20 Birth 800 600 400 200 Conception 3 5 10 15 20
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) Periodic Remember that screening only identifies the risk for developmental disorders. It does not diagnose developmental disorders.
AAP Recommendations: Developmental Screening Autism 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 July 2016 -Total of 143 enrolled providers Changes in Developmental Screening FY 16 27% 56% 73% FY 15 23% 45% 77% FY14 43% 48% 52% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Percentage of enrolled providers surveyed no yes
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!
PGCSNIPS Brings Local, State, and Nationwide Supports and Tools to Physician Offices SNIPS Team PGCPS- Lead Agency Prince George s County Infants & Toddlers Program One World Center for Autism, Inc. Health Services for Children with Special Needs, Inc. Maryland Behavioral Health Integration in Pediatric Primary Care Prince George s County Health Department Data Management and Outreach Coordinator PGSNIPS TEAM Health Department- OWCA- Outreach Nurse Medical Consultant Healthcare Trainings Autism 101 Collaborative Screening
New Outreach Efforts- OBGYN s and Birthing Hospitals Birth through Five Help Me Thrive Campaign OBGYN s 25 69 New 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) Disability 2003 2013 Difference Trend Specific Learning Disabilities Emotional Disabilities Multiple Disabilities 40,648 30,876 (<10,000) 9,727 6,635 (<3,000) 5,475 4,335 approx. 1,000 Autism 4,084 10,211 (> 6,000) Total State 113,780 102,702 (approx. 11,000) Reasons-Better/ more specific diagnosis of other disabilities? Reality Have to be strategic in identifying and serving this population
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 identificationmissing 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 1 st Autism 1,118 2 nd Multiple Disabilities 495 3 rd Other Health Impaired 272 4 th 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 Inside Regular Education 79-40% 6,813 53.56% 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!
1 st 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 See article on ASD diagnosis in Minority Children 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
1 st 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)
ASQ-3 Approved Tools for Childcare Best Beginnings BRIGANCE Early Childhood Screen III PRINT Speed DIAL-4 Early Screening Inventory Revised 2008 Edition (ESIR Professionals
Using the most Common tool! ASQ
Option: Ages & Stages Advantages 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 Scoring Scoring instructions: Yes = Sometimes = No = Each section: 10 points 5 points 0 points 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 Communication What 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.
% of children referred Attrition following decision to refer 100% 100% 80% 60% 64% 40% 40% 31% 20% 0% referred referral received assessed eligible
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 Family Child Childcare Professional Healthcare 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-screeningtool-review-and-application-2.html For Healthcare Providers: PGCSNIPS MDAAP Maryland Excels
Thank you!