2015 ehdi national conference louisville, ky · 2015. 3. 9. · lfu/ltd, 35.3% u.s., 2011) total...

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

2015 EHDI National Conference

Louisville, KY

� 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

� We have no relevant financial or nonfinancial

relationships in the products or services

described, reviewed, evaluated or compared

in this presentation.

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.

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/ehdi-

data.html

Hearing Loss, 8.6%

No Hearing Loss, 48.3%

In Process, 2.7%

Died / Declined,

3.4%

Non-resident / Moved,

1.7%

LFU/LTD, 35.3%

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

� 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.

Receiving EI, 62.9%

LFU/LTD, 26.0%

Died/Declined, 5.2%

Not Eligible Part C, 2.8%

Monitoring Only (No EI),

1.8%

Non-resident / Moved, 1.5%

Documented Intervention Status of Infants with Hearing Loss

(U.S., 2011) Total w. Hearing Loss = 5,170

2,634

3,2613,430

4,054

5,103 5,046

5,170

0

1,000

2,000

3,000

4,000

5,000

6,000

2005(n=44)

2006(n=47)

2007(n=44)

2008(n=48)

2009(n=49)

2010(n=52)

2011(n=50)

Nu

mb

er

ID

Year

Infants w. Documented Hearing LossTotal = 28,698 (2005 – 11)

� 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

92

8481

0

20

40

60

80

100

Minn Exp Minn Concept Mac Vocab

Lan

gu

ag

e Q

uo

tien

t

Assessment

Median Developmental Quotients across 7 states, excluding Colorado

98

9290 89 87.5

74

88 88

8082

7774

0

10

20

30

40

50

60

70

80

90

100

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87

74

82

71

78 76

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State

Developmental Quotients: MBCDI

98

87 868880 78

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20

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120

Minn Exp Minn Concept Mac Vocab

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AssessmentDeaf Hearing

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74 74

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Minn Exp Minn Concept Mac

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Assessment

By 6 mos > 6 mos

� 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

Infant

screened

Infant

referred

DX

Confirmed

Etiology

determined

Enroll in

intervention

At birth 3 mos. 6 mos.

Family Support

Examples:

Born at home

Vacation births

Medical Home

Infant

screened

Infant

referred

DX

Confirmed

Etiology

determined

Enroll in

intervention

At birth 3 mos. 6 mos.

Family Support

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

Draft EHDI Self Assessment Tool

Testing of tool

Stakeholder Feedback

Modeled after

existing tools

Picasso had a saying. He said 'Good artists copy,

great artists steal.' And we have always been

shameless about stealing great ideas.

– Steve Jobs

� Keep language “as-is”

� Headings – 4 levels

� Clear purpose

� Introduction

� Length may be a barrier

� Break into sections and prioritize

State and National Partner Feedback:

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

0 20 40 60 80 100

Conducting the Self-

Assessment collaboratively

with a group of other

stakeholders was valuable.

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

Strongly Disagree

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”

0 20 40 60 80

The purpose of the EHDI

System Self-Assessment

tool is clear.

The format of the EHDI

System Self-Assessment

tool makes sense.

Strongly Agree

Agree

Neither Agree or Disagree

Disagree

Strongly Disagree

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 high-

quality 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: Diane.behl@usu.edu

Nicole Brown: nicole.brown@state.mn.us

Candace Lindow-Davies: candaced@lifetrack-mn.org

Alyson Ward: alyson.ward@usu.edu

Christine Yoshinaga-Itano: christie.yoshi@Colorado.EDU