Transcript Missouri Newborn Hearing Screening : A status report

Missouri Newborn
Hearing Screening:
A status report
Jenna M. Bollinger, B.A.
Department of Communication Disorders & Deaf Education
Fontbonne University
Spring 2004
Abstract
In January 2002, the state of Missouri began a Universal Newborn Hearing
Screening (UNHS) program in response to the implementation recommendations
made by the Joint Committee on Infant Hearing (JCIH) year 2000 position
statement. These principles and guidelines addressed audiologic screening and data
collection as well as follow-up and intervention, to improve services for infants and
their families. After nearly two years of full implementation, this archival study set
out to examine which aspects of Missouri’s Early Hearing Detection and
Intervention program adhere to the principles and guidelines outlined by the JCIH.
In order to draw conclusions regarding the current functioning of Missouri’s
program several sources of existing data will be utilized. These sources include:
intensive review of the JCIH principles and guidelines, interviews with health care
professionals involved in the initial implementation, interviews with professionals
involved in the present functioning of the program, and analysis of current research
evaluating other UNHS programs. After examination of these sources, Missouri’s
compliance with individual principles will be discussed.
Purpose
 Compare
the principles delineated by the
Joint Committee on Infant Hearing (JCIH)
year 2000 position statement with
Missouri’s newborn hearing screening
program
Question
 What
aspects of Missouri’s Early Hearing
Detection and Intervention (EHDI)
program are consistent with the principles
and guidelines outlined by the Joint
Committee on Infant Hearing (JCIH)
2000?
Procedures

Reviewed existing research regarding universal
newborn hearing screening
 Reviewed JCIH Year 2000 Position Statement
 Developed research questions
 Interviews
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Program Manager of MO NHS
Regional Representatives
Screening Staff from various hospitals (metropolitan,
suburban, rural)
State Audiologic Consultant
JCIH Principle One

All infants have access to hearing screening using a
physiologic measure. Newborns who receive routine
care have access to hearing screening during their
hospital birth admission. Newborns in alternative
birthing facilities, including home births, have access
to and are referred for screening before one month of
age. All newborns of infants who require neonatal
intensive care receive hearing screening before
discharge from the hospital. These components
constitute universal newborn hearing screening.
Findings: Principle One
 It
appears all hospitals are using
physiologic measures of screening.
 Because the law only applies to hospital
and birthing facility births, infants born in
the home are exempt from mandatory
screening.
 Current practice is consistent with MO law,
however the law is not consistent with the
JCIH principle.
JCIH Principle Two
 All
infants who do not pass the birth admission
screen and any subsequent rescreening begin
appropriate Audiologic and medical
evaluations to confirm the presence of hearing
loss before 3 months of age.
Findings: Principle Two
 MO
law does not outline a timeline for
follow-up.
 Infants may be receiving follow-up testing
consistent with the JCIH timeline, however
the follow-up procedures aren’t initiated
prior to 3 months of age.
 Additionally, some families may have
difficulty scheduling appointments
depending on their location.
JCHI Principle Three
 All
infants with confirmed permanent hearing
loss receive services before 6 months of age in
interdisciplinary intervention programs that
recognize and build on strengths, informed
choice, tradition, and cultural beliefs of the
family.
Findings: Principle Three
 While
the law does not acknowledge the 6
month deadline, it does indicate
intervention in a timely manner.
 Follow-up data is not kept at the state level
regarding the provider and extent of early
intervention services.
JCIH Principle Four

All infants who pass newborn hearing screening but
who have risk indicators for other auditory disorders
and/or speech and language delay receive ongoing
audiolgic and medical surveillance and monitoring
for communication development. Infants with
indicators associated with late-onset, progressive, or
fluctuating hearing loss as well as auditory neural
conduction disorders and/or brainstem auditory
pathway dysfunction should be monitored.
Findings: Principle Four
 MO
currently keeps a high risk registry.
 Thus far, it has been difficult for screeners
to report possible risk factors to the state
due to the nature of the form/paperwork.
 The state has revised the form and
expects implementation soon.
JCIH Principle Five
 Infant and
family rights are guaranteed
through informed choice, decision-making,
and consent.
Findings: Principle Five
 Hospitals
present hearing screening as
part of the newborn screening protocol.
 Family has the right to refuse screening.
 According to MO law, refusal of screening
must be documented in writing.
JCIH Principle Six
 Infant hearing
screening and evaluation
results are afforded the same protections all
other health care and educational information.
As new standards for privacy and
confidentiality are proposed, they must
balance the needs of society and the rights of
the infant and family, without compromising
the ability of health and education to provide
care.
Findings: Principle Six
 HIPPA!!!
JCIH Principle Seven

Information systems are used to measure and report
the effectiveness of EHDI services. While state
registries measure and track screening, evaluation,
and intervention outcomes for infants and their
families, efforts should be make to honor a family’s
privacy by removing identifying information wherever
possible. Aggregate state and national data may also
be used to measure and track the impact of EHDI
programs on public heath and education while
maintaining the confidentiality of individual infant
and family information.
Findings: Principle Seven

Confidentiality is honored.
 The state is recording data regarding the results
of initial screening. A protocol is not available for
documenting follow-up and intervention
outcomes.
 The data management system does not
evaluate individual hospital outcomes.
 Hospitals keep track of their own performance
data
JCIH Principle Eight
 EHDI
programs provide data to monitor
quality, demonstrate compliance with
legislation and regulations, determine fiscal
accountability and cost effectiveness, support
reimbursement for services, and mobilize and
maintain community support.
Findings: Principle Eight
 MO
law does not address quality
indicators, compliance with legislation, or
cost effectiveness issues.
 Hospitals efforts to maintain “standard of
care” tend to be self-monitoring.
Conclusions
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The majority of births are being screened.
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Confidentiality is maintained.
Quality screening measures are used.
There is no data available to draw conclusions
about follow-up and intervention.
 The state’s data management system makes it
difficult for regional representatives to
enter/access data.
 Multiple services housed in multiple departments
makes communication difficult.
Areas for Future Investigation
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Enrollment in Intervention
Data Management Systems
Hospital Performance
Long-term Cost Effectiveness
Parent Attitudes/Satisfaction/Knowledge
Referral Process
References
Joint Committee on Infant Hearing (2000). Joint
Committee on Infant Hearing Year 2000 Position
Statement. Audiology Today, August 2000
(Special Issue), 6-24.

Background References Available Upon Request