Act Early on Developmental Concerns: Partnering with Early Intervention

1. 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

2. 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

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

4. 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

5. 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)

6. 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)

7. 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. . . .

8. 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)

9. People involved in early intervention • Families • Speech Therapists • Physical Therapists • Occupational Therapists • Special instructors/teachers • Nutritionists • Nurses • Physicians • Social Workers

10. The importance of early screening and referral

11. 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

12. Don’t take a wait and see approach!

13. 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, O’Connor K. Pediatrician Practices Regarding Referral to Early Intervention Services: Is an Established Diagnosis Important? Ambulatory Pediatrics. 2006;6:105-109 • Wiggins, Baio, Rice, 2006

14. 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

15. 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

16. Early Intervention in Washtenaw County, MI

17. Early InterventionMichigan EarlyOn Washtenaw County Ann Arbor, Saline & Ypsilanti and surrounding area

18. Washtenaw CountyCollaborativeSuccess by 6 • Universal Parent Education Programs • Birth to Six Agency Collaborative • Single Entry Enrollment to Publicly Funded Preschool Programs

19. 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

20. First Steps Washtenaw • Home Visits • Screening/Assessment • Ages & Stages Questionnaire • Observations • Educational Groups • Parent Education

21. First Steps Washtenaw Universal Early Childhood Program Early Intervention/EarlyOn

22. Early On • Federally Mandated Program • Children Ages birth to 36 months • Developmental Delays

23. Early On • Provided by IDEA • Individuals with Disabilities Education Act (Part B – Special Education) • Part C

24. 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

25. 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

26. Necessitates a Referral “Established Condition” • Medical Diagnosis • Child Abuse/Neglect • In utero Exposures • Regulatory Disorders • High Lead Levels

27. How Does It Occur? Referral by • Physicians • Parents • Parent Educator • Child Protective Services

28. 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

29. 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

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

31. 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

32. 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

33. 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

34. 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

35. 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

36. Collaborating withPhysicians • Meeting with Physicians • Presenting to Physician Groups • Involving Physicians in Collaborative Groups

37. 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)

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

39. 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

40. 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.

41. 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

42. 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

43. 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)

44. Through CSHCS, D-PIP, and ABCD, it was determined that. . . a better partnership needed to be formed with Early Intervention

45. 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

46. Alphabet Soup What does it mean to you? ROI . . . .

47. Alphabet Soup What does it mean to you? Return on Investment or Release of Information

48. 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

49. Collaborative Agenda #1 Flowchart for Referral and Communication Points