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Act Early on Developmental Concerns:

Partnering with Early Intervention

Monday, July 14, 2008

•Georgina Peacock, MD, MPH, FAAP AUCD Fellow, CDC/National Center on Birth Defects and Developmental Disabilities •Diane Zedan Director, Special Education, First Steps Washtenaw/Early On •Layla Mohammed, MD, FAAP Primary Care Pediatrician, Ypsilanti Pediatrics

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Objectives Describe importance of referring children to

Early Intervention and follow up services as soon as a developmental issue is suspected

Understand the role of the Early Intervention program

Utilize strategies identified on the teleconference to form partnerships, encourage referrals, and improve communication with Early Intervention and community services

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Importance of referring children to Early Intervention and follow up services as soon as a developmental issue is suspected

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Developmental Disabilities

Group of severe chronic conditions manifested during developmental period

Attributable to an impairment in physical, cognitive, speech or language, psychological, or self-care areas

About 17% of US children <18 years of age and ~2% have a serious developmental disabilities

Most causes unknown

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Screening and SurveillanceIt’s more than just height and

weight….

Surveillance – informal assessment of children’s development at each doctor’s visit

Screening – formalized screening at well child visits 9,18, 24 or 30 months (general development) 18 and 24 months (autism specific)

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What is Early Intervention?

Coordinated, community-based, multidisciplinary services for children with delays or at risk for delays

Individuals with Disabilities Act (IDEA) Part C (Birth to Three) Part B (Early childhood special education)

3-5 years old (in some states, the age is birth to 5)

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Early Intervention

Or. . . . . First Connections (Arkansas) Early Start (California) Family Centered Early Supports and

Services (New Hampshire) Help Me Grow (Ohio) Early On (Michigan) Infant & Toddler Connection (Virginia) Baby Watch (Utah) ETC. . . .

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Eligibility States must provide services to:

Children experiencing developmental delays Children with established mental and physical risk

conditions (eg, low birth weight) States may provide services to:

Children at risk of experiencing a developmental delay Each state is required to establish a definition of

eligibility for services for 5 developmental domains: Motor Communication Cognitive Daily living Socio-emotional

(Definitions of eligibility differ significantly from state to state)

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People involved in early intervention

Families Speech Therapists Physical Therapists Occupational Therapists Special instructors/teachers Nutritionists Nurses Physicians Social Workers

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The importance of early screening and referral

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Parents struggle for answers

Early signs may be subtle Inconsistent skills - strengths and weaknesses Regression in some children Parents often suspect their child

has a hearing loss was “too” good as a baby has language delays

Pediatricians often first line of professional help

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Don’t take a wait and see

approach!

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Parental Concerns Majority of general pediatricians believe that an

established diagnosis is important when considering EI referral. This perception is associated with decreased reported referral for children with speech delay and those whose parents express concern for inappropriate development.1

Recent study by CDC indicated most children with an autism spectrum disorders diagnosis had signs of a developmental problem before the age of 3, but average age of diagnosis was 5 years.2

1. Silverstein M, Sand N, Glascoe FP, Gupta VB, Tonniges TP, O’Connor K. Pediatrician Practices Regarding Referral to Early Intervention Services: Is an Established Diagnosis Important? Ambulatory Pediatrics. 2006;6:105-109

2. Wiggins, Baio, Rice, 2006

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Learn the Signs. Act Early.

When children have a delay, they need to be referred to a developmental specialist and to their local early

intervention provider

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Early intervention…

Gives a child his/her best chance at reaching his true potential

Provides support and education to the family (eg, parents, caretakers, siblings, etc.)

Helps to monitor child for secondary developmental problems

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Early Intervention in

Washtenaw County, MI

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Early InterventionMichigan EarlyOn

Washtenaw CountyAnn Arbor, Saline & Ypsilanti

and surrounding area

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Washtenaw CountyCollaborativeSuccess by 6

Universal Parent Education Programs Birth to Six Agency Collaborative Single Entry Enrollment to Publicly Funded

Preschool Programs

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Success by 6

First Steps Washtenaw (0 – 6 years old) Early On Children’s Health Insurance Advocate Child Care Providers Training Parent Network Single Entry Preschool Enrollment

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First Steps Washtenaw

Home VisitsScreening/Assessment

Ages & Stages QuestionnaireObservations

Educational GroupsParent Education

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First Steps Washtenaw

Universal Early Childhood Program

Early Intervention/EarlyOn

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Early On

Federally Mandated Program

Children Ages birth to 36 months

Developmental Delays

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Early On

Provided by IDEAIndividuals with Disabilities

Education Act (Part B – Special Education)

Part C

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IDEA, Part CEarly Intervention

Individualized Family Service Plan (IFSP)

Child-find system, public awarenessServices provided in the context of the

family's natural or least restrictive environment

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Eligibility Criteria(in Michigan)

“Established Condition” Delay in one or more areas of development

(cognitive, physical, emotional, gross/fine motor, adaptive)

Child has questionable quality of developmental skills

Physician diagnosis is not needed

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Necessitates a Referral

“Established Condition” Medical Diagnosis Child Abuse/Neglect In utero Exposures Regulatory Disorders High Lead Levels

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How Does It Occur?

Referral byPhysiciansParentsParent EducatorChild Protective

Services

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How Does It Occur?

- Online

- 800 number

- Local phone number

To find contact information for your state EI program visit the National Early Childhood Technical Assistance Center’s Web site at: www.nectac.org

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In Washtenaw County

Early Intervention Services Provided by Local School Districts and outside agenciesPublic HealthPrivate Early Childhood Consultants

(eg, Special Education Teachers)Huron Valley Child Guidance

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What Occurs?1. Intake

2. Developmental Evaluation

3. Eligibility Determined

4. If Eligible, Development of IFSP

5. Receipt of Services

(within 45 days of signing consent)

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What’s in an IFSP? Present Level of Development Family Resources, Priorities, Concerns Ways to Enhance Child’s Development Outcome Expectations Specific Services to be Provided Dates to Start and Stop/Re-evaluate Name of Service Coordinator

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What Services Might be Provided?

Family Education Physical Therapy Occupational Therapy Speech & Language Therapy Social Work Vision/Hearing Services Counseling Nutrition Service Coordination Health Care Provider Collaboration

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Physician’s Role

Developmental Surveillance and Screening Referral of Child/Patient Provide Health Information to Early On Ensure Patient Continues to Receive Services Ensure Patient Receives Services They Need Respond to Identification of Specific Delays

with Medical Work-up as Needed

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Physician’s Role

With permission from the family: A health report, including vision and hearing. Results of the Ages & Stages Questionnaire,

M-CHAT or another screener Possible consultation regarding what is best

for the family/child. Updates to the Service Coordinator

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Service Coordinator should share with Physician

With permission from the family: Assessment Results IFSP; Services Provided

(can be provided through new feedback form) Updates on Progress Every 6 Months Coordinate Outside Agency Supports

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Collaborating withPhysicians

Meeting with Physicians Presenting to Physician Groups Involving Physicians in Collaborative Groups

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So…DON’T WORRY

BUT DON’T WAIT

Refer Patients You’re Concerned About!

1800earlyon.org (MI)1-800-EARLYON (MI)www.nectac.org (US)

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One practice’s experience in forming partnerships, encouraging referrals, improving communication and determining value to practice

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Michigan Initiatives

Children Special Health Care Services (CSHCS): Medical Home Initiative

MI AAP Chapter: Developmental Surveillance and Screening Policy Implementation Project (D-PIP)

Michigan Department of Community Health (MDCH): Assuring Better Child Health & Development (ABCD) Project

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CSHCS

CSHCS: A program that provides medical and support services to eligible children and youth with special health care needs. Eg: Down Syndrome, Phenylketonuria Focuses almost exclusively on physical health

conditions and services provided by pediatric sub-specialists

Goals: Promotion of medical home for children with special health care needs in the state through educational outreach programs.

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D-PIP

The Developmental Surveillance and Screening Policy Implementation Project (D-PIP) selected 17 pilot primary care pediatric practices to implement the AAP policy statement, Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening

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D-PIP

D-PIP Project in Michigan : Ypsilanti Health Center Each month data was collected on developmental

assessment for the first 10 scheduled patients between ages 8-30 months

Data collection for 9 months Data collection for both Pediatrics and Family

Medicine

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ABCD Assuring Better Child Health and Development (ABCD)

Project: Michigan is one of 20 states/territories selected to participate in the ABCD Screening Academy, an

initiative supported by The Commonwealth Fund. A 15 month project 20 Michigan pilot clinics to integrate screening tools

in preventive health care visits Ypsilanti Health Center Medicaid reimbursed

patients are assessed for utilization of developmental screening tools, eg: Ages & Stages Questionnaire (ASQ)

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Through CSHCS, D-PIP, and ABCD, it was determined that. . .

a better partnership needed to be formed

with Early Intervention

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Creating the Team Ypsilanti Health Center/ Pediatrics Washtenaw County EarlyOn Program Local District EarlyOn Coordinators Washtenaw County Dept. of Public Health Social

Worker Meetings: every 6 weeks, Sept 2007-now

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Alphabet Soup What does it mean to you?

ROI . . . .

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Return on Investment

orRelease of Information

Alphabet Soup What does it mean to you?

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Collaborative Goals

Flowchart for referrals Communication points Release of Information Consents Needs Assessment Referral Database Enrollment Follow-up Collaborative Presentations: primary care

physicians/ MI AAP Collaborative Projects- Autism Pilot

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Collaborative Agenda #1

Flowchart for Referral and Communication Points

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Collaborative Agenda #2

Needs Assessment

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Practice Needs Assessment

Number of children categorized by age Number of children with special health care

needs National Data – National Center for Health

Statistics Survey (2005) for children < 5 yr Speech delay: 12.1/ 1000 Developmental delay and MR: 8.4/1000 Other mental, emotional : 3.6/ 1000 Learning Disability: 2.3/1000 ( relative standard error 20-30% ).

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Barriers Electronic Medical Record (EMR) or Health system data:

Enough volunteers to check each EMR for data. Manager/ institute open to query?

Referrals based on ASQ results Language limitations Specificity 76% (not all children will be identified)

(sensitivity 87%)

Over referral 11% Under-referral 4%

EarlyOn readiness for influx of children with abnormal screening tests (eg-will there be enough Early Intervention providers?)

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Needs Assessment Questions

How many children served are less then 5 yr of age?

How many children less then 5 yrs are developmentally screened?

How many children are being referred to EarlyOn? For 3-5 years of age, what about preschool??

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Statistics

Conclusion: An Early On database is needed to identify appropriate identification and care plan.

No. of Providers 3.5 (accounting for 2.25 FTE)

No. patients <18 8,481

Anticipated patients <18 w/activity limitations/ chronic conditions

462

No. Patient < 18 w/ CSHCS 133

Anticipated no. of patients with limited activity due to a chronic condition less then 5 yr

Unknown (US – 3.9%)

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Needs Assessment

How many children less then 5 yrs are developmentally screened? Ages 4-60 months are developmentally

screened Subpopulation of 8-30 months will hopefully

represent all screening: How many children between ages 8-30

months are being screened? 26/30 (86%)

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YPSILANTI D-PIP PROJECT

Ages 8-30 months (2006-2007)

0

5

10

15

20

25

30

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July March

Total

Surv.

Screening

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Database Results Children referred to Early On between 1/2007 and 6/2008:

Speech Delay 16

Gross Motor Delay 7

Social Emotional 3

Fine Motor Delay 2

Failure to Thrive 2

Vision Problems 1

Problem Solving 1

Total 32/1691

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Enrollment Follow-up

Received feedback from 1 out of 2 Early On coordinators

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Have not received Early On comprehensive evaluation due to barriers such as transportation, time, etc.

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Receiving continued follow up 12

Resolved 2

Total 32

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Value A sincere effort from each member to remain part

of the collaboration Time commitment valuable but necessary Communication: utilizing e-mail and meetings Enhance family-physician partnership Presentations: free

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Current Challenges: Clash of Privacy Laws?

HIPAA: Health Insurance and Portability Accountability Act

FERPA: Family Educational Rights and Privacy Act

Part C: IDEA B-3 early intervention population

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Overcoming Barriers to Getting Started

Find out who you should be talking to

Find out how referrals are preferred

Establish a plan for information exchange that works for your office and EI

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Resources National Early Childhood Technical Assistance

Center (NECTAC) www.nectac.org/Provides contact information for state Part C coordinators and other early childhood resources.

National Dissemination Center for Children with Disabilities (NICHCY) www.nichcy.org/Provides information on disabilities, IDEA, No Child Left Behind, and research-based information on effective educational practices.

Learn the Signs. Act Early.ww.cdc.gov/ncbddd/autism/actearly/ Provides parent, provider, and child care educational resources on developmental milestones and developmental disabilities.

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Resources Developmental Surveillance & Screening Policy

Statementhttp://aappolicy.aappublications.org/cgi/content/full/pediatrics;118/1/405

Early Intervention Policy Statementhttp://aappolicy.aappublications.org/cgi/content/full/pediatrics;120/5/1153#R10

Early On Physician’s Packet Sample packet of materials developed by EI to share with physicians.

Early Intervention Referral Form Form used by physicians to refer to EI. Form includes release of information consent.

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Questions & Answers

For additional questions, please contact us at: Georgina Peacock - gpeacock@cdc.gov Diane Zedan - dzedan@wash.k12.mi.us Layla Mohammed - lmohamme@umich.edu Holly Griffin - hgriffin@aap.org