2015 ehdi national conference louisville, ky · 2015. 3. 9. · lfu/ltd, 35.3% u.s., 2011) total...
TRANSCRIPT
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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
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� 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
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� We have no relevant financial or nonfinancial
relationships in the products or services
described, reviewed, evaluated or compared
in this presentation.
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Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention Following Confirmation That a Child Is Deaf or Hard of Hearing
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� 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
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� 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.
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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.
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Source: CDC EHDI Hearing Screening and Follow-up Survey
(HSFS)
www.cdc.gov/ncbddd/hearingloss/ehdi-
data.html
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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
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� 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.
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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
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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)
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� 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.
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� 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
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NATIONAL EARLY CHILDHOOD ASSESSMENT PROJECT: DEAF AND HARD OF HEARING
States collecting outcomes of children identified through UNHS/EHDI programs
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• 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
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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
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98
9290 89 87.5
74
88 88
8082
7774
0
10
20
30
40
50
60
70
80
90
100
1 2 3 4 5 6
La
ng
ua
ge
Qu
oti
en
t
State Exp Lang Comp/Con
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81
87
74
82
71
78 76
0
20
40
60
80
100
1 2 3 4 5 6 7
La
ng
ua
ge
Qu
oti
en
t
State
Developmental Quotients: MBCDI
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98
87 868880 78
0
20
40
60
80
100
120
Minn Exp Minn Concept Mac Vocab
La
ng
ua
ge
Qu
oti
en
t
AssessmentDeaf Hearing
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93
85 8483
74 74
0
10
20
30
40
50
60
70
80
90
100
Minn Exp Minn Concept Mac
La
ng
ua
ge
Qu
oti
en
t
Assessment
By 6 mos > 6 mos
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� 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.
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� 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.
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� 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
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� 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
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� 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
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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
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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
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� Is an additional way to assess needs and gaps.
� Can help capture your system vulnerabilities.
� Helps identify what strategies to test using QI
methodology.
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� 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
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Draft EHDI Self Assessment Tool
Testing of tool
Stakeholder Feedback
Modeled after
existing tools
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Picasso had a saying. He said 'Good artists copy,
great artists steal.' And we have always been
shameless about stealing great ideas.
– Steve Jobs
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� 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:
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Level #1 – ALL GOALS
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Individual Goal and
Recommendations for#8
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• 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
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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
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� “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”
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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
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� 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.
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� 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.
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� 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
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� 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
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� 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...”
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� 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.”
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� 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.”
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� Underscores what EI services includes
� “The ultimate goal of EHDI is to optimize
language, social, and literacy development
for children who are D/HH”
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� 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
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� 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
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� 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
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� Offering parents a guide to JCIH
� Suggesting ways for parents to engage
professionals and to harness the
recommendations for use with their own
child
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"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
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Diane Behl: [email protected]
Nicole Brown: [email protected]
Candace Lindow-Davies: [email protected]
Alyson Ward: [email protected]
Christine Yoshinaga-Itano: [email protected]