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1 2012 EHDI Conference Sharon S. Ringwalt, Ph.D., CCC-SLP National Early Childhood Technical Assistance Center (NECTAC), Mid-South Regional Resource Center.

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Presentation on theme: "1 2012 EHDI Conference Sharon S. Ringwalt, Ph.D., CCC-SLP National Early Childhood Technical Assistance Center (NECTAC), Mid-South Regional Resource Center."— Presentation transcript:

1 EHDI Conference Sharon S. Ringwalt, Ph.D., CCC-SLP National Early Childhood Technical Assistance Center (NECTAC), Mid-South Regional Resource Center (MSRRC), and Temporary Assignment to CDC EHDI Team IDEA 2004 FOR EHDI P ROFESSIONALS 2/8/12

2 2

3 W HAT IS IDEA?  Individuals with Disabilities Education Improvement Act (IDEA 2004)  Originally passed in 1975 as the Education for All Handicapped Children Act  Established framework for special education and early intervention services in this country  Reauthorization signed December 3, /8/12

4  1975 – Congress passed PL (Education of All Handicapped Children Act)  PL ◦ Section 619 (added preschool) ◦ Part H (became Part C)  IDEA reauthorized  2004 – passed the Individuals with Disabilities Education Improvement Act 2004  September 2011 – new Part C regulations issued H ISTORICAL O VERVIEW OF IDEA 2/8/12 4

5 T HE L AW OF THE L AND  The Individuals with Disabilities Education Act (IDEA) provides a free, appropriate, public education for all children with disabilities, including speech, language, and hearing disorders. Part B funds cover children ages Services are provided as outlined in the Individualized Education Program (IEP). Part C funds cover infants from birth through age two and services are provided as outlined in the Individualized Family Service Plan (IFSP).  Part B services are mandatory; Part C services are not. 5 2/8/12

6 IDEA 2004  Signed into law December 3, 2004  NEW NAME (i.e., includes IMPROVEMENT!) but same acronym  NPRM: Proposed Code of Federal Regulations for Part B (services for children 3-21) released June 10, 2005; new Part C regulations issued September 2011  Statute Implementation: July 1, 2005; New Part C Regulations Implementation: July 1, /8/12

7 IDEA 2004: P URPOSE  To ensure all children with disabilities have available to them a free appropriate public education  To ensure the rights of children with disabilities and their parents are protected  To assist education agencies to provide for the education of all children with disabilities  To assist States in the implementation of early intervention services for infants and toddlers with disabilities and their families  To ensure that educators and parents have the necessary tools to improve educational results for children with disabilities 7 2/8/12

8 IDEA 2004: P ART C P URPOSE  To develop and implement a  statewide  comprehensive,  coordinated,  multidisciplinary  system of support and services  for infants and toddlers with disabilities  and their families 8 2/8/12

9 W HAT ARE S OME OF THE NEW IDEA S ?  Early Intervening Services allow use of up to 15% of special education funds to be used for pre- referral activities  Allows for use of a Response to Intervention model in determining LD  Need to document what you are doing and how you are doing it! 9 2/8/12

10 W HAT ARE OTHER NEW IDEA S ?  Due Process changes for Part B  Parents must notify districts of their specific issues at the time that they file a written complaint  Two years statute of limitations instead of three  The party requesting the hearing shall not be allowed to raise issues at the hearing that were not raised in the due process complaint notice, unless the other party agrees 10 2/8/12

11 M ORE ON IDEA 2004  Assistive Technology - not considered a surgically implanted medical device (i.e., cochlear implant, prosthesis) NOR is it considered a related service  Highly Qualified Teachers – SPED teachers must be NCLB HQ + SPED certified  Related Services includes nursing services 11 2/8/12

12 M ORE ON IDEA 2004  Addresses specific concerns about ELLs  References Homeless  Includes definition of universal design  Mandates provision of instructional materials for students with print disabilities through the National Instructional Materials Access Center  Increases the benefits afforded private school students 12 2/8/12

13 R EAUTHORIZATION OF IDEA 2004 – H IGHLIGHTS  Implications for Audiology  Policy direction provided on the need to provide information on “the full range of options to families of deaf and hard of hearing children”  Addition of “interpreting services” as an identified related service  Identification of “teachers of the deaf” as special educators 2/8/12 13

14 R EAUTHORIZATION OF IDEA 2004 – H IGHLIGHTS, CONTINUED  Implications for Audiology  States given flexibility to define personnel qualifications  Retention of Regional and State centers (schools) for children, when this is the least restrictive environment (LRE)  Establishment of both “cued language services” and “sign language [services]” as early intervention (EI) services 2/8/12 14

15 H OW D OES P ART C W ORK ? 15 2/8/12

16 IFSP P ROCESS  From Referral to Service Delivery  See NECTAC handout (also milies/ifsp_process_chart.pdf) (currently being revised to incorporate changes in new Part C regs) milies/ifsp_process_chart.pdf 16 2/8/12

17 C HILD F IND : I DENTIFICATION AND R EFERRAL  Potential Referral Sources:  From EHDI Program  From Hospitals  From Physicians  From Families  From Child Care Providers  From Other Community Programs  Other? 17 2/8/12

18 I NTAKE AND F AMILY A SSESSMENT  Varies from state-to-state  Service Coordinator – Interim or permanent  Includes finding out families needs, priorities, goals 18 2/8/12

19 C HILD E VALUATION AND A SSESSMENT  3 potential steps: screening, evaluation, and assessment  Use assessment in program planning and for progress monitoring  Apply data collection/assessment to decision-making process  Eligibility varies widely from state-to-state, including eligibility of children with hearing loss 19 2/8/12

20 IFSP D EVELOPMENT  Developed by a TEAM, not a single individual  Must include the family 20 2/8/12

21 S ERVICE D ELIVERY AND T RANSITION  Services must be delivered in a child’s natural environment  Transition begins with the very first IFSP meeting  Transition includes specific requirements; some changes with new Part C regs 21 2/8/12

22 R EQUIREMENTS ? W HAT R EQUIREMENTS ?  New Part C regs: /pdf/ pdf New Part C regs: /pdf/ pdf  What do the data tell us? 22 2/8/12

23 23 2/8/12

24 determine reimbursement rates improve coding control costs establish provider credentials determine what services covered quality assurance reporting to stakeholders OSEP assist employers w/decisions about benefit packages distinguishing between educational and medical necessity Private Insurance predict resource utilization establish eligibility criteria develop data driven payment mechanisms Medicaid How would they each use data? 2/8/12 24

25  SPP = State Performance Plan  6 year plan, developed by each state in 2005; extended for 2 more years (until next reauthorization?!?)  APR = Annual Performance Report  Completed yearly by each state, submitted in February  Covers data from the previous FFY (Federal Fiscal Year) – e.g., the APR submitted February 2012 reported data from FFY 2010 (July 2010 through June 2011) N ATIONAL F OCUS : SPP/APR 2/8/12 25

26 2/8/12 26  C1 – Timely Service Delivery  C7 – Timeliness of IFSP  C8 – Early Childhood Transition (A, B, C)  C9 – Part C Monitoring System  C10 – Administrative Complaints  C11 – Due Process Hearings  C14 – Data Accuracy

27 R ESULTS (P ERFORMANCE ) I NDICATORS : P ART C  C2 – Settings  C3 – Child Outcomes (A, B, C)  C4 – Family Outcomes  C5 – Child Find, Ages Birth to 1  C6 – Child Find, Ages Birth to 3  C12 – Resolution Agreements  C 13 – Mediations 2/8/12 27

28 W HAT DOES “ COMPLIANCE ” MEAN ?  State’s target MUST be 100%  Affects State’s “Determination”  Meets requirements  Needs assistance  Needs intervention  Needs substantial intervention  State must report all non-compliance 2/8/12 28

29 W HAT DOES “ RESULTS ” MEAN ?  State sets its own targets, based upon stakeholder input  Has not affected State’s “Determination” – but may in future  State must report all non-compliance 2/8/12 29

30  Accountability  Data – systems, quality, validity, reliability  Finance  MOE (maintenance of effort)  FAF (Federal Allocation Formula)/FMAP (Federal Medical Assistance Percentage)  Reimbursement – Insurance, Medicaid, Family Co-Pay, other sources  ARRA funds – must have been expended by 12/31/11  Quality services  Evidence-based practices  Family and provider satisfaction S TATES ’ F OCUS 2/8/12 30

31 N EW A CCOUNTABILITY M EASURES  In Fall 2011, OSEP began new 4-year cycle of continuous improvement and monitoring visits  2-3 days focusing on “verification”  NEW for Fall 2011: 1-2 days focusing on “results”  After the first round of Results Visits, process being reviewed and refined  First-round states chose to focus on child find, child outcomes or family outcomes 2/8/12 31

32 A CCOUNTABILITY  Providers whose agencies receive Part C funds are responsible for implementing all IDEA requirements.  Compliance Indicators  Results Indicators  Related Requirements 2/8/12 32

33 M AINTENANCE OF E FFORT  States must maintain their (fiscal) effort each year – the same or additional state dollars must be allocated to Part C each year  Implications:  States’ continued participation in Part C  Bifurcated system  Changes in eligibility What might each of these mean for children with hearing loss; with speech-language delays or disorders? 2/8/12 33

34 S ERVICE D ELIVERY 2/8/12 34 Where and By Whom?

35 L EGISLATIVE M ANDATE  Recent federal legislation requires that early intervention services and supports be provided to the maximum extent appropriate in natural environments, including the home and community settings in which children without disabilities participate (IDEA, 2004, SEC 632 G). 2/8/12 35

36 L EGISLATIVE M ANDATE  According to IDEA 2004, services and supports should be provided in a setting other than a natural environment only when early intervention cannot be achieved satisfactorily in a natural environment (IDEA, 2004, SEC 632 G).  In those cases, written justification must be provided. 2/8/12 36

37 W HAT DOES THIS MEAN FOR Y OU ?  What are the implications of this legislative mandates for those who deliver services to infants and toddlers who are deaf or hard of hearing? For the families of these children? 2/8/12 37

38 D ETERMINATIONS  OSEP makes states’ determinations  Announced in early June  States must make determinations of local programs, considering:  Performance on compliance indicators;  Whether data submitted by LEAs/EIS programs is valid, reliable, and timely;  Uncorrected noncompliance from other sources; and  Any audit findings. 2/8/12 38

39 I MPORTANT T RANSITIONS C URRENTLY O CCURRING IN S ERVICE D ELIVERY  Focus on family-centered practices & principles  Emphasis placed by legislation and “recommended practices” on delivery of service in natural environments  Move from primary direct service delivery model to a range of service delivery options 2/8/12 39

40 W HAT A RE N ATURAL E NVIRONMENTS ?  Families’ homes  Early care and education settings  Community settings (e.g., park, recreation facility, play groups)  Any place that families and IFSP team members indicate is a desired location for intervention 2/8/12 40

41 B ENEFITS OF S ERVICE D ELIVERY IN N ATURAL E NVIRONMENTS  Natural learning opportunities are important for promoting children’s development and functioning (Dunst, Bruder, Trivette, Hamby, Raab, & McClean, 2001).  Families report enhanced feelings of security and control over services being provided in their home and increased family support structure (Stowe & Turnbull, 2001). 2/8/12 41

42 B ENEFITS OF N ATURAL E NVIRONMENTS  The basic premise of intervention in natural environments is the involvement of the family and caregivers in the teaching and learning process with children as they communicate throughout the day (Bruder, 1998).  SLP has concrete opportunities to assess the child in daily activities as they occur and demonstrate how to embed intervention into these activities, increasing the accuracy and frequency of communication opportunities for the child and caregivers (Cripe & Venn, 1997). 2/8/12 42

43 B ENEFITS OF S ERVICE D ELIVERY IN C OMMUNITY S ETTINGS  Support and encouragement from others outside the family  Improvement in child self-esteem  Facilitation of social skills, adaptive skills, and positive behavior through peer modeling  Enhanced sense of belonging on the part of the family (Bruder, 2001;Stowe & Turnbull, 2001) 2/8/12 43

44 G OAL OF EARLY INTERVENTION “…To enable young children to be active and successful participants during the early childhood years and in the future in a variety of settings – in their homes with their families, in child care, in preschool or school programs, and in the community.” (from Early Childhood Outcomes Center, 2/8/12 44

45 45 2/8/12

46 EHDI AND P ART C 2/8/12 46

47 CDC: N EWBORN H EARING S CREENING AND D IAGNOSIS  In 2009, the Centers for Disease Control and Prevention (CDC) data showed that over 97% of newborns in the United States were screened for hearing loss.  Of those who were screened, 1.6% did not pass the final or most recent hearing screening.  Of those babies not passing the hearing screening, 67.9% were diagnosed as either having or not having a hearing loss before 3 months of age.  There was an increase in the number of infants screened for hearing loss from 1999 (46.5%) to 2007 (97.0%). 2/8/12 47

48 P ART C S ERVICES FOR B ABIES WITH H EARING L OSS  In 2009, 88.0% of the babies with diagnosed hearing loss were referred to Part C Early Intervention Services.  Among the 88% of those referred, 91% were eligible for Part C services  The remaining 9% referred either were not eligible for services or their eligibility status was unknown. 2/8/12 48

49 I SSUES BETWEEN EHDI AND P ART C  Loss to follow-up/loss to documentation  Eligibility criteria  Child and family privacy  Data sharing 2/8/12 49

50 2/8/12 50 In 2005 and 2006, more than 90% of infants were screened for hearing loss. Of these infants, 2% in both years did not pass their final screening. Out of those not passing the final screening, approximately two- thirds were not documented as having a diagnostic finding. In both years, the reason reported for the majority of infants was loss to follow-up/loss to documentation (LFU/LTD). Although the majority of infants with permanent hearing loss were receiving intervention, more than 30% were classified as LFU/LTD and could not be documented as receiving intervention services. (Gaffney, Green, & Gaffney, Publication Information: Public Health Reports / March–April 2010 / Volume 125 (pages 199 – 207) ( fm?Volume=125&Issue=2)

51 I MPLICATIONS  Continued expansion of follow-up efforts by Early Hearing Detection and Intervention (EHDI) programs and data reporting by providers, data linkage and integration, and information sharing between providers and EHDI programs will be vital to further reduce loss to follow-up and to document program effectiveness in identifying infants with hearing loss and ensuring these infants receive appropriate early intervention services. (Centers for Disease Control and Prevention. Identifying Infants with Hearing Loss — United States, 1999–2007. MMWR 2010;59: ) 2/8/12 51

52 R ECOMMENDED A CTION S TEPS TO I NCREASE T IMELY A CCESS TO E FFECTIVE EI S ERVICES D ELIVERED BY Q UALIFIED P ROVIDERS  Increase support for training and innovative delivery models  Collaborate on training modules  Create best-practice guidelines for EI  Disseminate practice guidelines and provide technical assistance for implementation  Develop valid tools for monitoring and reporting developmental outcomes  Request increased support for interventions  Expand loaner hearing aid banks (Source: treatment and intervention breakout group, “Accelerating Evidence Into Practice for the Benefit of Children With Early Hearing Loss” workshop, January 24, /8/12 52

53 W HY C OLLECT O UTCOMES D ATA ? 2/8/12 53

54 PART REVIEW FINDINGS FOR IDEA P ART C AND P ART B (619) Results not demonstrated: “While the program has met its goal relating to the number of children served, it has not collected information on how well the program is doing to improve the educational and developmental outcomes of preschool children served.” Read more at 2/8/12 54

55 OSEP’ S RESPONSE  Required states to submit outcome data in their Annual Performance Report (APR)  Funded the Early Childhood Outcomes (ECO) Center to do research, make recommendations, and assist states 2/8/12 55

56 OSEP REPORTING REQUIREMENTS : C HILD OUTCOMES  Positive social-emotional skills (including social relationships)  Acquisition and use of knowledge and skills (including early language/communication  Use of appropriate behaviors to meet their needs 2/8/12 56

57 W HY COLLECT OUTCOMES DATA ? Aggregated data on outcomes are important for state and local purposes.  To document program effectiveness  To improve programs Identify strengths and weaknesses Allocate support resources, such as technical assistance 2/8/12 57

58 Understanding the Three Child Outcomes 2/8/12 58

59 F UNCTIONAL OUTCOMES  Not domain-based, not separating child development into discrete areas (communication, gross motor, etc.)  Refer to behaviors that integrate skills across domains  Can involve multiple domains  Emphasize how the child is able to carry out meaningful behaviors in a meaningful context 2/8/12 59

60 C HILDREN HAVE POSITIVE SOCIAL RELATIONSHIPS  Involves:  Relating with adults  Relating with other children  For older children, following rules related to groups or interacting with others  Includes areas like:  Attachment/separation/autonomy  Expressing emotions and feelings  Learning rules and expectations  Social interactions and play 2/8/12 60

61 C HILDREN ACQUIRE AND USE KNOWLEDGE AND SKILLS  Involves:  Thinking  Reasoning  Remembering  Problem solving  Using symbols and language  Understanding physical and social worlds  Includes:  Early concepts—symbols, pictures, numbers  Imitation  Object permanence  Expressive language and communication  Early literacy 2/8/12 61

62 C HILDREN TAKE APPROPRIATE ACTION TO MEET THEIR NEEDS  Involves:  Taking care of basic needs  Getting from place to place  Using tools (e.g., fork, toothbrush, crayon)  In older children, contributing to their own health and safety  Includes:  Integrating motor skills to complete tasks  Self-help skills (e.g., dressing, feeding, grooming, toileting, household responsibility)  Acting on the world to get what one wants 2/8/12 62

63 Assessing the Three Functional Child Outcomes 2/8/12 63

64 DEC RECOMMENDED PRACTICES FOR ASSESSMENT  Involve multiple sources  Examples: family members, professional team members, service providers, caregivers  Involve multiple measures  Examples: observations, criterion- or curriculum-based instruments, interviews, norm-referenced scales, informed clinical opinion, work samples 2/8/12 64

65 A SSESSMENT PRACTICES APPROPRIATE FOR OUTCOMES MEASUREMENT : ASHA ASHA recommended practices: Gather information from families, teachers, other service providers Collect child-centered, contextualized, descriptive, functional information (American Speech-Language-Hearing Association, 2005) 2/8/12 65

66 A SSESSMENT INSTRUMENTS  Assessment tools can inform us about children’s functioning in each of the three outcome areas  Challenge: There is no assessment tool that assesses the three outcomes directly 2/8/12 66

67 A SSESSING FUNCTIONAL OUTCOMES  What does the child usually do?  Actual performance across settings and situations  How the child uses his/her skills to accomplish tasks  Not the child’s capacity to function under unusual or ideal circumstances  Not necessarily the child’s performance in a structured testing situation 2/8/12 67

68 U SING INFORMATION FROM ASSESSMENT TOOLS  The ECO Center has “crosswalked” assessment tools to the outcomes  Crosswalks show which sections of assessment tools are related to each outcome  Having many items does not necessarily mean the assessment captures functioning across settings 2/8/12 68

69 W HAT WE ARE MEASURING  Percent of children who demonstrate improved:  Positive social emotional skills (including positive social relationships)  Acquisition and use of knowledge and skills (including early language/communication and early literacy)  Use of appropriate behaviors to meet their needs 2/8/12 69

70 H OW WE REPORT IT – P ERCENTAGE OF CHILDREN WHO : a.Did not improve functioning b.Improved functioning, but not sufficient to move nearer to functioning comparable to same-aged peers c.Improved functioning to a level nearer to same-aged peers but did not reach it d.Improved functioning to reach a level comparable to same-aged peers e.Maintained functioning at a level comparable to same- aged peers 2/8/12 70

71 M UST HAVE : 2 DATA POINTS TO CALCULATE PROGRESS  The OSEP categories describe types of progress children can make between entry and exit 2/8/12 71

72 U SING DATA FOR PROGRAM IMPROVEMENT = FMA Findings Meanings Action 2/8/12 72

73 F INDINGS  Findings are the numbers, such as “45% of children in category b”  The numbers are not debatable 2/8/12 73

74 M EANING  How do you interpret the #s?  Is this finding good news? Bad news? News we can’t interpret?  Meaning is debatable -- even reasonable people can reach different conclusions from the same set of numbers  Stakeholder involvement can be helpful in making sense of findings 2/8/12 74

75 A CTION  Given the meaning put on the numbers, what should be done?  Recommendations or action steps  Action can be debatable – and often is  A role for stakeholders 2/8/12 75

76 Who are the stakeholders? Early Intervention Stakeholders Media Managers EDHI Faculty Consumers ASHA State Legislators Providers Congress School Boards State ICC State Assns NIH AAA APTA NAEYC Private Foundations Pediatricians Family Practitioners Child Psychiatrists Advocacy Groups Head Start Programs Journals CDC Grant writers NECTAC 2/8/1276

77 I MPLICATIONS  What are the implications of collecting outcomes data for providers who work with children with hearing loss? For the families of those children? 2/8/12 77

78 P ROGRAM IMPROVEMENT : W HERE AND HOW  At the:  State level – TA, policy  Regional or local level – supervision, guidance  Classroom level – spend more time on certain aspects of the curriculum  Child level – modify intervention 2/8/12 78

79 K EY POINTS  Findings (i.e., the summary numbers) by themselves are meaningless  Meaning is attached by those who read the numbers  You have the opportunity and obligation to attach meaning 2/8/12 79

80 E XAMPLES OF PROCESS QUESTIONS  Are services high quality?  Are children and families receiving all the services they should in a timely manner?  Are services family-centered?  What are the barriers to high quality services? 2/8/12 80

81 D ATA QUALITY  If you conclude the data are not (yet) valid, they cannot be used for program improvement  Meaning = data not yet valid  Action = continue to improve data collection and quality assurance 2/8/12 81

82 C OLLABORATION AND CONNECTIONS ARE ESSENTIAL ELEMENTS OF SUCCESS Interagency collaboration is an unnatural act committed by non-consenting adults. Frank Heron 2/8/12 82

83 LEAD AGENCIES NEED SUPPORT AND PARTNERSHIP FROM COLLABORATING AGENCIES MORE THAN EVER Challenge to maintain an appropriate balance between quality and compliance in context of major fiscal crisis 2/8/12 83

84  Federal  State L AW AND R EGULATIONS – P ERTAINING TO SICC S 2/8/12 84

85 P OTENTIAL R OLES OF THE P ART C C OORDINATOR /L EAD A GENCY A DMINISTRATOR 2/8/12 85  Supports the SICC in carrying out their functions and responsibilities  Serves in an ad hoc capacity – non-voting member  Assists with developing the agenda  Reports on topical issues and priorities  Provides a State-of-State/LA report at SICC meetings  Reports on and seeks input for State Performance Plan and Annual Performance Report  Reports on Level of Determination for State and local programs  Reviews and comments on the SICC annual report  Updates the SICC on State, regional, and Federal issues  Assists in identifying SICC priorities and goals  Provides administrative support and/or funds for the SICC

86 W HAT ’ S YOUR P OTENTIAL R OLE IN P ART C?  As EHDI Coordinator  As an Audiologist  As a Speech-Language Pathologist  As a Teacher of a child with a hearing loss  As another service provider  As a family member 86 2/8/12

87 A DDITIONAL R ESOURCES  National Early Childhood Technical Assistance Center (NECTAC):  Early Hearing Detection and Intervention Programs (EHDI): programs.html programs.html  National Center for Hearing Assessment and Management (NCHAM):  PEDIATRICS Volume 126, Supplement 1, August /8/12 87


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