3. “A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.) STEPPs

5.  Developed by Illinois Chapter, American Academy of Pediatrics (ICAAP)  Investment of Illinois Council on Developmental Disabilities  Jointly sponsored by ICAAP and AAP  Approved by the Illinois Nurses Association

6. STEPPs  2.75 CME credits - AAP  3.6 contact hour credits - INA  Please sign in  Complete evaluation form in handout booklet

7. Part I: Overview Part II: Recommended Tools Part III: Referral Process Part IV: Implementation Strategies in the Pediatric Office

8. Identify the purpose of developmental screening and early intervention Use tools to screen for developmental delays and autism Implement referral procedures for children who fail or pass but exhibit potential development concerns Employ parent/caregiver education materials Implement efficient office procedures for screening and referrals STEPPs Learning Objectives

9. Needs Assessment Screening and surveillance practices Referral procedures Topics to cover Miscellaneous issues

10. Pediatrics Vol. 108 No. 1 July 2001 AAP Policy AAP Committee on Children with Disabilities recommends routine standardized developmental and behavioral screening

11. Terminology Surveillance vs Screening

12. Missed Opportunities Practices that do not regularly screen for developmental progress miss opportunities for early referral and treatment. Typical Story

13. Why Screen and Refer? Screening works! Helps young brains develop and advances physical and emotional development Improves patient/family satisfaction Federal/legal requirements

14. Detection Rates Without ToolsWith Tools 20% of mental health problems identified (Lavigne et al. Pediatr. 1993; 91:649-655) 30% of developmental disabilities identified (Palfrey et al. JPEDS. 1994; 111:651-655) 80-90% with mental health problems identified (Sturner, JDBP 1991; 12:51-64) 70-80% with developmental disabilities correctly identified (Squires et al., JDBP 1996; 17:420- 427)

15. Screening “Caveats” Detection is not perfect, even with good tools Clinical judgment still plays a role Risk of over-referrals

16. Early Brain Development

17. Cost Effective The practice of developmental screening and referrals is not a gimmick. The cost of treating developmental problems early is substantially lower than treating a patient who is diagnosed late.

18. Good Customer Service Parents want and expect support on child development –Commonwealth Fund –Healthy Steps Screening can encourage parent involvement and investment in child’s health care

19. Good Customer Service (cont’d) “I just knew that my child was not normal. And she (the physician) kept telling me ‘you need to relax, you’re tired…you’re stressed, you’re overreacting. Take his binky away, take the bottle away.’ I hear all of that and I just want to scream. None of this applies. He’s not normal.”

20. Good Customer Service (cont’d) “I loved her!” “He is superfantastic, I won’t see another doctor!” “He actually listened to me!” Parents who felt that physicians listened to and acted on their concerns were incredibly grateful.

21. Federal/Legal Requirements Americans with Disabilities Act (ADA) 1990 Individuals with Disabilities Education Act (IDEA) 1975 (Amended in 1997) Healthy People 2000 & 2010 Goals

22. Current Practices in Developmental Screening 15-20% of pediatricians use screening tests routinely Developmental checklists Guidelines for Health Supervision (AAP) Bright Futures (MCHB/AAP) –trigger questions to promote discussion between families and providers

23. Detection of Disabilities by Physicians Legend 10 th 50 th 75 th 100 th percentile25 th Hyperactivity Emotional Problems Other Developmental Learning Disability Speech Age of First Diagnosis (years) 0246810

24. Illinois Unmet Needs Project 87% reported they provide developmental monitoring (92% of pediatricians) 64% are not using commercially developed screening tools 36% do…. –Denver and Denver II (most common) –Ages & Stages Questionnaire Screen for social-emotional/behavior problems less often Final Report: May 2002 Developmental Screening by Primary Care Physicians

25. Illinois Unmet Needs Project Barriers to screening: –Lack of time –Lack of staff –Inadequate reimbursement –Lack of training –Lack of parent acceptance of delay Final Report: May 2002 Developmental Screening by Primary Care Physicians

26. General Implementation Issues Identification of children with delay Pitfalls and challenges for/with: –Providers –Patients –Parents and caregivers Take Careful STEPPs!

27. Take Careful STEPPs: What to Expect Developmental or Behavioral Disorders –Speech and language issues –Mental retardation –Learning problems –Attentional disorders –Other behavioral difficulties only ½ of children with these problems identified prior to school entrance

28. Take Careful STEPPs: What to Expect http://www.pedstest.com/test/peds_intro.html

29. Take Careful STEPPs: Providers Lack of education on tools and their use Expectations about children’s development The “wait and see” approach Continued reliance on observations Failure to trust screening tests or results Reliance on poor quality or homemade tools

30. Take Careful STEPPs: Children Development exists on a continuum Children manifest skills variably, inconsistently Latent period Developmental problems increase with age –2-3% of 0-18 month olds –10% of 24-72 month olds –16% of 0-21 year olds

31. Take Careful STEPPs: Children (cont’d) Screen at all well child visits Consider screening at some sick visits

32. Take Careful STEPPs: Parents/Caregivers Parents are reservoirs of rich information Screening structures observations, reports, and communication about child development Screening becomes a teaching tool for parents and health care professionals Screening improves relationships Parent involvement reduces cost

33. Take Careful STEPPs: Parents/Caregivers Parent recall is often inaccurate Parent reports rely on current descriptions of child’s behavior and skills Parents may face personal challenges Reliable under certain conditions, with well-developed tests

34. Take Careful STEPPs: Preparing Parents/Caregivers Explain tool and purpose to parents Discourage assumption of a “problem” –addressing behavioral and developmental issues is an important part of your service Assess ability to complete tool properly –with assistance? –in office or at home?

35. Take Careful STEPPs: Communicating Results Focus on positives Practice your language “Learning too slowly” “Delayed in some areas” “Needs some extra attention and support”

36. Take Careful STEPPs: Communicating Results Stress the need for further evaluation and follow-up Offer parents activities they can do right away Help the parent to inform others

37. Take Careful STEPPs: Encouraging Next Steps Acknowledge parent’s fear Avoid judging or scolding parents Encourage communication, particularly when recommendations are not followed Provide parent with information on the referral Set a follow-up appointment

38. Take Careful STEPPs: Encouraging Next Steps The importance of information to parents: –Must explain situation to others –Language barriers –Logistics “Demystify” the process

39. Part I Summary Developmental Screening is: Recommended by AAP Different than surveillance Beneficial to children and practices Underutilized in Illinois Challenging but rewarding to implement

41. STEPPs Features of developmental screening tests Parents’ Evaluation of Developmental Status – PEDS parent report tool Ages and Stages Questionnaire - ASQ Checklist for Autism in Toddlers – CHAT Autism spectrum disorders

42. Screening Test Features Sensitivity Specificity Positive predictive value Validity Reliability

43. Screening Test Features Scoring Training Administration

45. Used for children birth through 8 years old Written at 5th-grade reading level Available in English, Spanish, Vietnamese Designed as parent report tool for waiting room Requires minimal time for parent to complete Can be performed as interview, requiring 2-3 minutes to complete and score

46. 1.general concerns 2.speech sounds 3.comprehension 4.use of hands and fingers 5.use of arms and legs 6.behavior 7.interaction with others 8.independence 9.preschool/school skills 10. other

47. Score & Interpretation Form Longitudinal Score –Tally parent’s concerns –Predictive concerns vs. non-predictive concerns Interpretation Form –Clinical judgments

48. Interpretation Form when and where to refer when to screen further when to offer developmental promotion and recommendations when to provide behavioral guidance when to observe vigilantly when reassurance and routine monitoring are sufficient

49. Interpretation of scores – Path A-referral – Path B-screen with secondary screen – Path C-counsel – Path D- foreign language barrier – Path E-elicit concerns at next visit

50. Challenges in Interpreting Parent Concerns consider language barriers watch for concerns that fall in multiple categories –he won’t do it for himself investigate tentative language pursue previous concerns

51. Case Example

52. Ages & Stages ™ Questionnaire Parent report tool with exercises, 30-35 items Covers 5 skill/developmental areas Written at a 6 th grade level Available in Spanish, English, and French Choices of responses (yes, sometimes, not yet) Requires 15-20 minutes to complete, 5 minutes to score 19 color-coded age-appropriate questionnaires and score sheets

53. Ages & Stages ™ Questionnaire Using the shapes below to look at, does your child copy at least three shapes onto a large piece of paper using a pencil or crayon, without tracing? Your child’s drawings should look similar to the design of the shapes below, but they may be different in size. Yes Sometimes Not Yet   

54. Ages & Stages ™ Questionnaire Use ASQ Information Summary sheet to score and for child’s permanent record Ensure test is complete Convert responses to point values: yes (10), sometimes (5), not yet (0) Add item scores by developmental area and record totals Use ratio scoring procedure for unfinished sections

55. Ages & Stages ™ Questionnaire Refer or Follow-up

56. Ages & Stages ™ Questionnaire The specific answers to each item on the questionnaire can be recorded below on the summary chart.

57. Ages & Stages™ Questionnaire Challenges Difficult to complete Difficult to stock and maintain Advantages Minimal physician time Low cost, photocopying permitted Developmental suggestions included Age-appropriate sensitivity and specificity Secondary screen to PEDS

58. Ages & Stages™ Questionnaire Case Example

59. Autism Spectrum Disorders

60. 1 in 500 children Age of diagnosis falling Parent concern ~18 months of age Early detection crucial

61. Autism Spectrum Disorders Distinguishing characteristics of children with autism at mental age of 12-24 months: –Lack of joint attention –Lack of eye gaze to determine others’ intentions –Lack of proto-declarative pointing –Using another person’s body as a tool –Failure to “show objects” to adults –Lack of initiation –Lack of symbolic play

62. Autism Screening Absolute Indications for Immediate Evaluation- Refer to Early Intervention System 12 months: No babbling, pointing, or other gestures 16 months: No single words 24 months: No 2-word, spontaneous phrases (not echolalic) Any age: Any loss of any language or social skills

63. CHecklist for Autism in Toddlers (CHAT) Completed by parents in the waiting or exam room Administered at 18 and 24 month visits Requires 5 minutes for parent to answer 9 questions Requires 1 minute for provider to incorporate 5 observations into physical and document Identifies 2 key behaviors – joint attention and pretend play

64. Scoring the CHAT 5 key items A5 (pretend play) A7 (protodeclarative pointing)* Bii (following a point) Biii (pretending) Biv (producing a point)* * medium risk

65. CHAT Follow Up Passes –no further action –no guarantee child will not develop social- communication problem –concerned parents should seek referral Fails –re-screen in one month –refer to specialist clinic for diagnostic evaluation after second fail AND –Refer to Early Intervention System

66. M-CHAT Modified Checklist for Autism in Toddlers 18 –24 months 23 questions, using original 9 from CHAT as basis Scored in five minutes by a professional or paraprofessional Yes/No responses convert to Pass/Fail responses A child fails the checklist when –two or more critical items are failed OR –any three items are failed. Not all children who fail the checklist will meet the criteria for diagnosis on the autism spectrum

67. Part II Summary

69. STEPPs Referrals and referral resources Early Intervention System and Child and Family Connections offices Practical aspects of incorporating developmental screening Coding and reimbursement

70. Referral Overview Prevention Programs –at risk Early Intervention –birth to age 3 –Suspected delay –qualifying condition Special Education –Age 3 to 21

71. Prevention Programs & Resources Early Head Start and Head Start –serves birth-3 and 3-5 year olds –comprehensive health and education services –low income families

72. Prevention Programs & Resources Early Head Start and Head Start –serves birth-3 and 3-5 year olds –comprehensive health and education services –low income families Healthy Families Illinois –serves birth-5, at risk for abuse and neglect –voluntary, home visitation program

73. Prevention Programs & Resources Early Head Start and Head Start –serves birth-3 and 3-5 year olds –comprehensive health and education services –low income families Healthy Families Illinois –serves birth-5, at risk for abuse and neglect –voluntary, home visitation program Child Care Resource and Referral –connect to child care services and subsidies –nurse consultants for health and safety issues

74. Prevention Programs & Resources (cont’d) All Our Kids: Birth to Three Networks –(312) 922-3863 extension 335 Early Childhood Education Block Grant Even Start Family Case Management

75. Prevention Programs & Resources (cont’d) Parents Care and Share of Illinois Parents Too Soon WIC Other resources at IDHS web site (www.dhs.state.il.us)

76. Early Intervention Who you should be referring to EI When to refer - timeline for evaluation/services Where to refer What specific services the EI system provides

77. Early Intervention: Who Children Aged 0-3 with a Developmental Delay Cognitive abilities Physical abilities - including vision and hearing Language/speech/communication Social-emotional abilities Adaptive self-help skills –At risk of substantial developmental delay

78. Early Intervention: Who At risk for delay Caregiver - diagnosed psychological disorder or developmental disability Or when Three or More Risk Factors are Present Caregiver - alcohol or substance abuser Caregiver - less than 15 years old Caregiver - 10th grade education level Caregiver - chronic illness Child - homeless Mother - abused alcohol/substances during pregnancy Child has not been removed from abusive circumstances Illinois Administrative Code Ch IV, § 500.50 Subchapter e

79. 0-3: Early Intervention- Where Child and Family Connections (CFCs) 25 sites in Illinois Functions: –assist in screening/evaluation –determine eligibility –assess needs –plan for services –identify providers Call 800-323-4769 for nearest CFC

80. 0-3: Early Intervention- What Occupational therapy Physical therapy Speech/language therapy Family training, counseling, support Service coordination Audiology Vision services Nursing Nutrition Psychological services Social Services Developmental therapy Transportation Medical diagnostic services

81. Autism Deaf-Blindness Deafness Emotional Disturbance Hearing Impairment Mental Retardation Multiple Disabilities Orthopedic Impairment Other Health Impairment Specific Learning Disability Speech/Language Impairment Traumatic Brain Injury Visual Impairment 3-5: Special Education

82. 3-5: Special Education- Referral Process Designate steps for making a referral Designate person(s) to whom a referral may be made Identify information to be provided Provide assistance necessary to meet requirements Identify process for providing parents with notice of their rights

83. Early Intervention: When 2 Working Days 45 Days For EI Identification Referral for Evaluation and Assessment (service coordinator assigned) Evaluation/Assessment Eligibility Determined IFSP Developed IEP Developed 60 Days For Spec Ed

84. QUESTIONS: Which tools at what intervals? How do you make time for screening? Who administers the screening, scores the tests, and communicates results? Who else may be screening the children in your practice? Incorporating Screening into Practice

85. ANSWER: The Team Approach –Solves problems –Generates new ideas –Encourages participation –Requires training Incorporating Screening into Practice

86. A Leader!

87. Scheduling Screening Tools 1 month Edinburgh 2 month Edinburgh 4 Month ASQ 6 Month PEDS 9 Month IDI 12 Month ASQ 15 Month ASQ 18 Month CHAT or M-CHAT 24 Month CHAT or M-CHAT 36 Month PEDS 48 Month ASQ 60 Month ASQ

88. Screening Administration Tools can be: Distributed at well child visits to be completed and brought back Mailed immediately prior to well child visits Completed in waiting or exam rooms Completed by phone interview prior to the visit

89. Staff Roles Professionals establish the system choose the tools train scorers provide feedback to parents advise parents on development and behavior Paraprofessionals implement the system score questionnaires provide routine feedback distribute patient education maintain and update referral lists

90. Staff Roles (cont’d) Secretarial staff: copy or order tools, maintain supply Medical records staff: stuff charts Receptionists: explain tool, offer assistance

91. Staff Roles (cont’d) Medical Assistants: score questionnaire Registered Nurses: score questionnaire, discuss results, offer referral information Physicians, NPs, PAs: review scored tools, discuss results, administer secondary screenings, make referrals

92. The Happy Employee

93. Problem Solving Activity Screening Implementation Worksheet

94. Maximizing Reimbursement Medicaid/KidCare (IDPA) coverage Private insurers Coding ICAAP assistance: Kathryn Hawley 312-733-6207 khawley@illinoisaap.net

95. “A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.) STEPPs

96. The End