2015 EHDI National Conference Louisville, KY

Diane Behl, M.Ed. - National Center for Hearing Assessment and Management Nicole Brown, MSN, PHN, CPNP - Minnesota Department of Health Candace Lindow-Davies - President, Hands & Voices Headquarters Alyson Ward, M.S. CHES, IA- National Center for Hearing Assessment and Management Christine Yoshinaga-Itano, Ph.D., CCC-A, CED - University of Colorado, Boulder



Background - Supplement to the JCIH 2007 Position Statement



Self Assessment - Quality Improvement Tool



Development and Testing of a Tool



Discussion – Value of Assessing EHDI System Progress



Vision for the Future

Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention Following Confirmation That a Child Is Deaf or Hard of Hearing

    

Ling sounds: a/i/u/s/sh/m EI supplement to JCIH 2007 http://pediatrics.aappublications.org/content/ea rly/2013/03/18/peds.2013-0008.citation First International Family Centered Early intervention Conference best practice protocol http://jdsde.oxfordjournals.org/content/18/4/429 .abstract



Optimal outcomes for children who are deaf or hard of hearing



JCIH wanted a focus on the end product



If outcomes are the purpose, then we should be measuring outcomes and the factors that impact it.



     

In coordination with EHDI, Part C, specialized educational services for children who are deaf or hard of hearing and their families, individual states are beginning to collect baseline data and develop state plans Georgia Washington Colorado Wisconsin Minnesota And an increasing number of states

All children who are D/HH and their families have access to timely and coordinated entry into EI programs supported by a data management system capable of tracking families and children from confirmation of hearing loss to enrollment into EI services.

Source: CDC EHDI Hearing Screening and Follow-up Survey (HSFS)

www.cdc.gov/ncbddd/hearingloss/ehdidata.html

U.S., 2011) Total Not Pass = 59,161

No Hearing Loss, 48.3%

In Process, 2.7% Died / Declined, 3.4%

Hearing Loss, 8.6%

Non-resident / Moved, 1.7% LFU/LTD, 35.3%



All children who are D/HH and their families experience timely access to service coordinators who have specialized knowledge and skills related to working with individuals who are D/HH.

Documented Intervention Status of Infants with Hearing Loss (U.S., 2011) Total w. Hearing Loss = 5,170 LFU/LTD, 26.0% Died/Declined, 5.2% Not Eligible Part C, 2.8% Monitoring Only (No EI), 1.8% Receiving EI, 62.9%

Non-resident / Moved, 1.5%

Infants w. Documented Hearing Loss Total = 28,698 (2005 – 11) 6,000

5,170

Number ID

5,000

5,103

5,046

2009 (n=49)

2010 (n=52)

4,000

4,054 3,430

3,000

3,261 2,634

2,000 1,000 0 2005 (n=44)

2006 (n=47)

2007 (n=44)

2008 Year (n=48)

2011 (n=50)



All children who are D/HH should have their progress monitored every 6 months from birth to 36 months of age, through a protocol that includes the use of standardized, norm-referenced developmental evaluations, for language (spoken and/or signed), communication (auditory, visual, and/or augmentative), social-emotional, cognitive, and fine and gross motor skills.

Knowledge and skills of the provider What actually occurs in intervention sessions – fidelity of intervention  Outcomes of the child  How quickly the system reacts to get the child and family to appropriate services  

NATIONAL EARLY CHILDHOOD ASSESSMENT PROJECT: DEAF AND HARD OF HEARING States collecting outcomes of children identified through UNHS/EHDI programs

• • • • • • • • • • • • • • •

Arizona – Arizona School for the Deaf and Blind California – Fremont School for the Deaf and Blind, LA Unified Public Schools Colorado: Colorado State School for the Deaf and Blind Idaho: Idaho State School for the Deaf and Blind Indiana: Indiana State School for the Deaf and Blind Texas: 5 pilot sites + San Antonio Wisconsin: state EHDI program Wyoming: state EHDI program Oregon Maine Minnesota Utah Washington Arkansas Florida

1000 assessments completed not including Colorado • Colorado has over 3000 assessments •

• • •

•

•

Bilateral loss = 249; Unilateral loss = 10 Auditory Neuropathy = 7 English-speaking home = 239; Spanish-speaking home = 20 No additional disabilities = 229; Have additional disabilities = 30 Boys = 140; girls = 119

• • •

Bilateral hearing loss English-speaking home No other disabilities that would affect speech or language development

• • • • • • • • • •

Arizona California Colorado Idaho Indiana New Mexico (previous participant) Texas Utah Wisconsin Wyoming

Median Developmental Quotients across 7 states, excluding Colorado

100

92 84

Language Quotient

80

81

60

40

20

0 Minn Exp

Minn Concept

Assessment

Mac Vocab

100 90

98

88

88

92

90

80

80

82

89

87.5

77

Language Quotient

70

74 74

60 50 40 30 20 10 0 1

2

State

3

4

5

Exp Lang

6

Comp/Con

Developmental Quotients: MBCDI

100 87 82

81

Language Quotient

80

74

78

76

6

7

71

60

40

20

0 1

2

3

4 State

5

100 90

95

85

87

84

78

80

78

Language Quotient

70 60 50 40 30 20 10 0

Mild-Mod

Minn Exp

ModSev-Prof

Minn Concept Assessment

Mac

100

90

90

83

80

Language Quotient

80

70

70

64

64

60 50 40 30 20 10 0

Minn Exp HL only

Add Disab

Minn Concept Assessment

Mac

120

98

Language Quotient

100

88

80

87

80

86

78

60

40

20

0

Deaf

Minn Exp

Minn Concept

Hearing

Assessment

Mac Vocab

100

93

90

83

85

84 74

80

74

Language Quotient

70 60 50 40 30 20 10 0

By 6 mos

> 6 mos Minn Exp

Minn Concept

Assessment

Mac



Important variable: Great variability across states in the number of sessions or the number of minutes per week with some children receiving intensive services while others are seen once a month.

 

Why is this important? States will be in better position to advocate for more services if they have data to indicate why it is needed.



Background - Supplement to the JCIH 2007 Position Statement



Self Assessment - Quality Improvement Tool



Development and Testing of a Tool



Discussion – Value of Assessing EHDI System Progress



Vision for the Future



Look at your data sources

 Analyze provider data  Annual data reported to CDC  Surveys and questionnaires



Analyze “Outlier” programs -- both positive and negative

 How well, if at all, are providers implementing the

9 promising strategies



Assessing needs and gaps should be ongoing and continuous

Another useful tool when assessing needs and gaps  Where and when are you missing the target?  Systematic, proactive method for evaluating a process to identify: 

 Where it might be vulnerable  How it might vulnerable  To assess the relative impact of different

vulnerabilities, in order to…  Identify the parts of the process that are in need of change

Medical Home Family Support At birth

Infant screened

3 mos.

Infant referred

Examples: Born at home Vacation births

DX Confirmed

6 mos.

Etiology Enroll in determined intervention

Medical Home Family Support At birth

Infant screened

6 mos.

3 mos.

Infant referred

DX Confirmed

Etiology Enroll in determined intervention

Examples: Born with fluid Access to ENT

Is an additional way to assess needs and gaps. Can help capture your system vulnerabilities.  Helps identify what strategies to test using QI methodology.  



Background - Supplement to the JCIH 2007 Position Statement



Self Assessment - Quality Improvement Tool



Development and Testing of a Tool



Discussion – Value of Assessing EHDI System Progress



Vision for the Future

Stakeholder Feedback

Modeled after existing tools

Testing of tool

Draft EHDI Self Assessment Tool

Picasso had a saying. He said 'Good artists copy, great artists steal.' And we have always been shameless about stealing great ideas. – Steve Jobs

State and National Partner Feedback:   

Keep language “as-is” Headings – 4 levels Clear purpose  Introduction



Length may be a barrier  Break into sections and

prioritize

Level #1 – ALL GOALS

Individual Goal and Recommendations for#8

• MN Hands & Voices • MN Association of Deaf Citizens • Commission of Deaf, DeafBlind, and Hard of Hearing Minnesotans • Deaf Mentor Program • Metro Deaf School

• Northern Voices • MN Dept. of Education Part C • MN Dept. of Health • Teachers of the Deaf and Hard of Hearing

This Self-Assessment tool helped me to better understand the strengths and weakness of the Minnesota EHDI System

Strongly Agree Agree Neither Agree nor Disagree Disagree

Conducting the SelfAssessment collaboratively with a group of other stakeholders was valuable.

Strongly Disagree

0

20

40

60

80

100

Percent of Respondents N=8



“Forces you to look at each part and gauge where the state is regarding each part. Brings forth information from various stakeholders that may not have been known previously”



“Very fascinating discussion. We have more work to do than I had initially thought. I’m eager to have more in depth conversations per goal with more time allotted.”



“Brutal honesty and collaboration”

The format of the EHDI System Self-Assessment tool makes sense. Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree

The purpose of the EHDI System Self-Assessment tool is clear.

0

20

40

60

80

Percent of Respondents N=8



Developing Priorities & Next Steps 





We didn’t have time to discuss priorities or reflect about how this relates to our needs here in MN. What will be done with the results?

Clear Context  Wording very open to individual

interpretation and having to refer back to JCIH document is cumbersome.

 Come to the table not only to assess

but to be informed about the works of others, your own state resources, and the possibilities for more  Be sure everyone is involved and

contributed and that they need to be willing and ready to scrutinize all aspects of their system without criticism.



Background - Supplement to the JCIH 2007 Position Statement



Self Assessment - Quality Improvement Tool



Development and Testing of a Tool



Discussion – Value of Assessing EHDI System Progress



Vision for the Future



Background - Supplement to the JCIH 2007 Position Statement



Self Assessment - Quality Improvement Tool



Development and Testing of a Tool



Discussion – Value of Assessing EHDI System Progress



Vision for the Future



Provides parents access to information experts CAN agree upon

“This EI services document, drafted by teams of professionals with extensive expertise in EI programs for children who are D/HH and their families, relied on literature searches, existing systematic reviews, and recent professional consensus statements in developing this set of guidelines...”



Emphasizes the critical nature of services ONCE a child is identified as D/HH

“Screening and confirmation that a child is D/HH are largely meaningless without appropriate, individualized, targeted and highquality intervention.”



Reinforces the need for individualized and family-driven services

“An optimal EI service team centers around the family and includes professionals with pediatric experience. The specific professionals on each team should be individualized on the basis of family needs.”



Underscores what EI services includes



“The ultimate goal of EHDI is to optimize language, social, and literacy development for children who are D/HH”

Addresses qualifications of providers, including children who use sign language, listening and spoken language, cue, etc.  Ensures the full range of opportunities for a the diverse needs of children  Addresses the needs of families from diverse cultural backgrounds 



Gives parents and adults who are deaf and hard of hearing critical and specific roles in the EHDI system  Goal 3a, Goal 8, Goal 9, Goal10, Goal 11



Just like the need for services following identification that a child is deaf or hard of hearing, a self-evaluation tool is needed to assist programs to align with JCIH goals  Reassuring for families that EHDI programs will evaluate    

their own activities through a standard measure Ensuring parents and adults who are deaf and hard of hearing participate in evaluation Calling for continuous improvement and self-reflection Making the case for possible funding of services that may not be already established in an EHDI program Perhaps allowing for programs to compare one to another for guidance on how to improve

 

Offering parents a guide to JCIH Suggesting ways for parents to engage professionals and to harness the recommendations for use with their own child

"The JCIH EI document has established important measures to determine if best practices are being established. It's very important that families also have the opportunity to both know and understand those best practices, in order to determine if the level of services that are being provided to them are appropriate. This is especially important for families who are starting out, since they often don't have any experiences and/or established comparisons to what should be the standard.“ -- Janet DesGeorges Executive Director of Hands & Voices Co-Chair of CDC EHDI Parent to Parent Subcommittee

Diane Behl: [email protected] Nicole Brown: [email protected] Candace Lindow-Davies: [email protected] Alyson Ward: [email protected] Christine Yoshinaga-Itano: [email protected]