Act Early on Developmental Concerns: Partnering with Early Intervention

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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 lt18 years of age and 2
  have a serious developmental disabilities
• Most causes unknown

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Screening and SurveillanceIts more than just
height and weight.

• Surveillance informal assessment of childrens
  development at each doctors 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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Dont 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

• Silverstein M, Sand N, Glascoe FP, Gupta VB,
  Tonniges TP, OConnor K. Pediatrician Practices
  Regarding Referral to Early Intervention
  Services Is an Established Diagnosis Important?
  Ambulatory Pediatrics. 20066105-109
• 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 County
• Ann 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
• Childrens Health Insurance Advocate
• Child Care Providers Training
• Parent Network
• Single Entry Preschool Enrollment

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First Steps Washtenaw

• Home Visits
• Screening/Assessment
• Ages Stages Questionnaire
• Observations
• Educational Groups
• Parent 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 IDEA
• Individuals with Disabilities Education Act (Part
  B Special Education)
• Part C

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IDEA, Part C Early Intervention

• Individualized Family Service Plan (IFSP)
• Child-find system, public awareness
• Services 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 by
• Physicians
• Parents
• Parent Educator
• Child 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 Centers Web site at
www.nectac.org
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In Washtenaw County

• Early Intervention Services Provided by Local
  School Districts and outside agencies
• Public Health
• Private Early Childhood Consultants (eg, Special
  Education Teachers)
• Huron Valley Child Guidance

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What Occurs?

• Intake
• Developmental Evaluation
• Eligibility Determined
• If Eligible, Development of IFSP
• Receipt of Services
• (within 45 days of signing consent)

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Whats in an IFSP?

• Present Level of Development
• Family Resources, Priorities, Concerns
• Ways to Enhance Childs 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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Physicians 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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Physicians 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

• DONT WORRY
• BUT
• DONT WAIT
• Refer Patients Youre Concerned About!
• 1800earlyon.org (MI)
• 1-800-EARLYON (MI)
• www.nectac.org (US)

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One practices 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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Alphabet Soup What does it mean to you?
Return on Investment or Release of Information
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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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(No Transcript)
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Collaborative Agenda 2

• Needs Assessment

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(No Transcript)
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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 lt 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.

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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 PROJECTAges 8-30 months
(2006-2007)
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Database Results Children referred to Early On
between 1/2007 and 6/2008
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Enrollment Follow-up
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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/auti
  sm/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/pediatrics118/1/405
• Early Intervention Policy Statementhttp//aappoli
  cy.aappublications.org/cgi/content/full/pediatrics
  120/5/1153R10
• Early On Physicians 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_at_cdc.gov
• Diane Zedan - dzedan_at_wash.k12.mi.us
• Layla Mohammed - lmohamme_at_umich.edu
• Holly Griffin - hgriffin_at_aap.org