x. Program Narrative
INTRODUCTION
Vermont has recently completed its fourth full fiscal year of universal newborn
hearing screening and follow-up. Every birth hospital in Vermont has committed to
screening each newborn for hearing loss and to reporting the results to the Vermont
Department of Health (VDH) Newborn Screening unit, within Children with Special
Health Needs (CSHN), Division of Maternal and Child Health (MCH). For even more
years, CSHN has organized and carried out the Hearing Outreach Program (HOP), the
source of public health outpatient audiologic screening (including referral for diagnosis
and enrollment into early intervention) for children birth to age four, including newborns
who missed or who did not pass their newborn hearing screening. HOP is a unique
intermediary step between screening and diagnosis. It utilizes otoacoustic emissions
(OAE) testing, performed by pediatric audiologists, at sites in or near every VT birth
hospital. It reduces the number of infants not passing their hospital screenings and
rescreenings by two-thirds (in 2005, 61 of 95 “refers” passed their outpatient
rescreening). In addition, Vermont is in its last year of funding from the Centers for
Disease Control to support a tracking database which is integrated into the state’s Child
Health Profile (SPHINX) along with electronic birth certificates, immunizations, lead
screening, and a planned series of other public health MCH programs. Vermont has been
unable to bring every newborn who does not pass the initial screening to diagnosis and
early intervention within the ideal timeframes of screen-by-one-month, diagnose-bythree-months, and intervene-by-six-months. This project proposes study and strategic
changes, implemented thoroughly through this small state, to reduce the loss to follow-up
at all steps along the way. Improved reporting, improved communication/clearer
protocols, and improved access to diagnosis are the key elements.
Lost-to-follow-up will be termed: LtRS (lost-to-rescreen), LtDX (lost-todiagnosis), LtEI (Lost-to-Early Intervention), and overall lost-to-follow-up, LtFU.
NEEDS ASSESSMENT
Vermont continues to be one of the more rural states as measured by population
density. Our birth rate has fallen, slowly but steadily. In 2005, Vermont had 6,139 instate births of whom 5,877 (95.7%) were screened. There were nearly 200 homebirths,
most of whom were not screened, so that the percentage of non-screened hospital births is
quite small. Ninety-seven of the 5,877 did not pass their final in-hospital screen, and of
the 97, two died. Fourteen of the 95 were lost-to-rescreening (LtRS) (14.7%), of whom
4 refused. 81 of 95 were rescreened as outpatients, most at HOP, a few at hospital or
community office-based audiology. 61 of the 81 passed the outpatient rescreening. 20
did not pass their rescreenings and were referred to diagnostic audiology. 16 of the 20
received diagnostic audiology, of whom 10 passed and 6 were diagnosed to have hearing
loss. Four of the 20 (20%) did not have diagnostic testing and were lost to diagnosis
(LtDX). All who were diagnosed with hearing loss were referred to early intervention
(zero % LtEI). Overall lost to follow-up (LtFU) rate was 18.9% (18 of 95).
1
Our experience with hearing screening suggests several slippery steps on the path
from screening to diagnosis and early intervention:
From hospital to rescreen:
Data: 81 of 95 babies who did not pass in the hospital received outpatient
screening (14.7% LtRS rate).
We agree wholeheartedly with the NICHQ project recommendations for strategies
to reduce lost-to-follow-up (scripting the message to parents, getting a second point of
contact for families, verifying identity of the primary care provider (PCP), making the
follow-up appointment, reminder calls, making two appointments, fax-back to PCP, faxback between audiologist and PCP, and obtaining consent for Early Intervention (EI)).
Several of these strategies we already employ because of our HOP clinics. However, we
note the following areas for improvement: Documentation (of baby names, parent
names, parent contact, and, perhaps most often, primary care physician name) of
information critical to communication about follow-up is sometimes incomplete or
wrong. We contact the hospital nursery; sometimes there is a staff person who can locate
missing information. Another strategy is to utilize the information from other points of
contact, bloodspot screening and birth certificates.
Scheduling follow-up screening appointments with HOP is the option of the
hospital and PCP, but routinely making HOP appointments before discharge would
assure that HOP has contact information and can mobilize its reminder system.
Consistent, sensitive, culturally-relevant screener-to-parent messages would
strengthen the assurance of follow-up. Our program has disseminated to every nursery
informational brochures for parents, written by parents and program staff. However, we
do not know how thoroughly these are used; in addition, we do not monitor the ongoing
training and the actual message-giving of each hospital’s screening staff.
Cross-border communication, reporting, and follow-up issues are significant in
New England, where small geographic state size and the location of birth hospitals on the
borders contribute to large numbers of residents of one state being born in a neighboring
state. About 10 percent of Vermont resident births are born—and screened--in
neighboring states. The New England states, under the leadership and assistance of
current federal funding sources (CDC and HRSA) are collaborating to forge interagency
agreements facilitating reporting of information critical to assuring babies receive
necessary follow-up.
Finally, the 2008 completion of the CDC-funded integrated database and tracking
system, the Vermont Child Hearing Health System, within the SPHINX Child Health
Profile, will streamline reporting processes, data quality assurance functions, and clinical
tracking and follow-up for Vermont newborns. The strategies suggested by our needs
are:
 Improved quality of documentation of screening results and contact information
 Making HOP appointments before discharge
 Improved parent materials and consistent messaging by screeners
 Cross-border agreements to assure interstate reporting, tracking and follow-up
 individual case management, in collaboration with the PCP, to assure family
connection with rescreening.
2
From rescreen to diagnosis:
Data: 16 of 20 babies referred for diagnosis received diagnostic audiolog (LtDX
rate of 20%).
Most babies who fail initial hospital screening in Vermont receive their
rescreening through the Hearing Outreach Program. A daylong screening clinic,
utilizing OAE technology and performed by audiologists with expertise in the
pediatric age range, is held at least monthly at or near each birth hospital. HOP is
directed by the pediatric audiologist who is also the director of the state’s newborn
hearing screening program, and the CDC-funded integrated database will serve both
screening and rescreening.
Maintaining the quality, capacity and accessibility of HOP is the keystone to
Vermont’s public health assurance for newborn screening. HOP audiologists provide
direct, face to face care for babies and their families, providing expert interpretation
of results and next steps for diagnosis, explaining the importance of early diagnosis
and intervention, and supporting families in accessing diagnostic audiology. HOP
also communicates results and recommendations to primary care physicians and
provides contact information about diagnostic centers.
Getting to timely, definitive diagnosis, however, is also a slippery point along the
way. Vermont’s only in-state tertiary care center, which is also the only facility in VT
which provides infant diagnostic ABR, does not perform sleep-deprivation and uses
only sedation/general anesthesia. Three other tertiary care centers, each over the
border in NH, NY, and MA, do attempt sleep-deprived ABRs. Parental and PCP
concerns about subjecting a newborn to sedation/general anesthesia “just” for a
hearing test causes delays or loss to follow-up in obtaining diagnosis.
There is no office-based diagnostic ABR available. We contacted each
audiologist in VT in 2005 to ask for a self-report of their ability to provide diagnostic
ABR for infants. We provided them the criteria (synthesized from fellow EHDI
states) which would qualify a provider of ABR. Only tertiary hospitals felt they met
the criteria, and one hospital-affiliated audiologist who had been attempting neonatal
diagnosis voluntarily decided to cease. Referral of newborns to office audiology,
utilizing sound-field technology, has resulted in multiple visits over months, without
timely conclusion. In addition, the monitoring and treatment of intervening middle
ear disease has obscured the urgency of a diagnosis of hearing loss.
Our program’s Hearing advisory council identified inconsistent medical diagnosis
to complement audiologic diagnosis as a concern as well. A discussion among
council audiologists, school consultants for the deaf, parents, and the state MCH
director and CSHN medical director (both of whom are practicing pediatricians and
AAP members; the latter is the “Chapter Champion”) identified confusion over what
additional medical diagnosis is recommended, who makes the recommendations, and
who carries them out. This project will work directly with the VT chapter of the AAP
and AAFP through the forum of their monthly meeting with the MCH division of the
Department of Health.
These suggest four areas of need:
 Support of HOP capacity statewide
3



expansion of HOP services to include AABR and diagnostic ABR; and
improved understanding of parents and PCPs about the why-when-and-how of
diagnostic audiology for babies who do not pass their newborn screens, and about
completion of medical diagnosis following audiological diagnosis; and
individual case management, in collaboration with the PCP, to assure family
connection with diagnostic testing.
From diagnosis to intervention:
Data: All 6 babies diagnosed in 2005 were referred to EI (LtEI rate of zero%).
An essential area of need is for the complete and timely reporting of diagnostic results
to the newborn hearing screening program, to enable the program to assure entry into
early intervention as well as the completion of medical diagnosis. While hospitals and
their nurseries routinely screen and report their screening results to the program,
diagnostic centers—only one of which is in Vermont itself—do not. When a baby is
rescreened at HOP and does not pass, the next step—timely ABR diagnosis—is discussed
with the family and the contact information for diagnostic sites is provided. This
information is also reported to the baby’s PCP. A release of information form is given to
the parents to present to the chosen diagnostic site, to facilitate reporting of results back
to the program. However, there is no mandated reporting, and in nearly every case,
obtaining the final diagnostic information requires persistent and exhaustive effort from
program staff. The New England EHDI programs are collaborating in this area of crossborder communication as well. The CDC-funded integrated database is ready to receive
diagnostic reports.
Finally, although we are certain that every baby diagnosed is referred to early
intervention, we have inconsistent access to IFSP dates and even less information about
the utilization of early intervention once a baby is referred. Vermont’s general early
intervention program, Family, Infant and Toddler Program (FITP), contracts with the
Vermont Center for the Deaf and Hard of Hearing’s Vermont Parent-Infant Program
(VtPIP) to provide case management and direct services for infants and toddlers with
hearing loss, statewide. FITP formerly was a unit within CSHN, and is now part of a new
Department for Children and Families (DCF). DCF and VDH are sister departments both
within the Agency of Human Services, which is promoting non-categorical and integrated
approaches to serving populations. It is an opportune time to forge agreements that will
enhance services for children. Thus, the four areas for improvement include:
 Complete reporting of babies’ diagnostic testing results, from both in-state and
out-of-state centers;
 Improved coordination and datasharing between the program and the early
intervention program.
 individual case management, in collaboration with the PCP, to assure family
connection with early intervention.
METHODOLOGY
We will undertake a Plan-Do-Study-Act (from IHI) for model improvement
process for implementing stategies which will result in a decrease in lost-to-follow-up
4
rate. We will utilize three advisory-workgroups: the existing Hearing Advisory Council
and its parent committee, a workgroup of nursery screening managers (which has met
with us at least annually since 2003, and the existing monthly meeting of the VDH-AAPAAFP-MCH group (described in Organizational Information, below). These groups will
be referred to as: Parents; Screeners; and AAP.
Goal 1: To put into practice the knowledge that parents of newborns with hearing
loss are the best advisors to the development of systems of care for their children.
We will recruit and hire a parent program advisor, through the Vermont Parent
Infant Program, the statewide early intervention program component for young children
with hearing loss, which already supports parent advisors for children in their program.
The parent will be a member of the project team. We will design and implement a
structured interview with families who have been through the hearing screening process
to identify strengths and weaknesses of their journey from screening to early intervention.
These interviews will inform our project activities at every level. In addition, we will
continue to confer quarterly with the existing CSHN Hearing Advisory Council (created
in the early 1990’s and co-chaired by a parent and hearing professional) and, especially,
its parent committee.
Goal 2: From hospital to rescreen: To reduce the percentage of newborns who,
having screened initially positive for hearing loss, do not receive a timely follow-up
screening.
After gathering input from the project Screeners group, we will undertake steps to
support nursery screeners to improve the completeness of data reported to the program,
and specifically to validate the PCP information and family contact information. We will
adjust HOP scheduling practices to facilitate the making of HOP appointments for babies
before they are discharged from the hospital. Working with our advisory groups we will
develop, disseminate, promote and monitor the use of materials for parents. We will join
with the New England EHDI states, our neighbors, to finalize and implement crossborder agreements to assure reporting, tracking and follow-up of VT resident babies born
out of state, and out-of-state follow-up for other-resident babies born in VT. We will
expand our program staffing so that individual case management, in collaboration with
the baby’s PCP, works to assure that rescreening occurs within the first month. These
objectives and their associated activities will be carried out by the program audiologist,
the program administrative assistant, the new parent advisor, and a new staff member, a
pediatric nurse.
Goal 3: From rescreen to diagnosis: To increase the percentage of newborns who,
having confirmed positive screen for hearing loss, receive a timely audiological
diagnostic evaluation
HOP is the principal provider of rescreening for babies who do not pass their
initial screen. The capacity and accessibility of HOP to rescreen newborns will be
sustained by supporting necessary staffing levels. In order to rescreen NICU infants
5
according to the new JCIH recommendations, HOP will add the equipment and training
necessary to provide AABR screening statewide. To address the lack of access to sleepdeprivation diagnostic ABR, we will expand HOP services to include new diagnostic
ABR technology which does not require infant immobility nor absolute quiet. The
equipment is also combined with OAE as is eminently portable, making is highly
appropriate for itinerant HOP services. Together with our advisory groups we will
develop and promote strategies for the achievement of a timely diagnosis—even when in
the presence of the co-morbidity of middle ear disease. To encourage PCPs to refer
newborns with hearing loss for further medical diagnosis, we will, in collaboration with
the AAP group, survey PCPs and ENTs for beliefs and current practices around
diagnosis, create and disseminate an educational message for PCPs to promote genetic,
ophthalmologic, and ENT referrals as appropriate, and test outcomes. As above, we will
expand our program staffing so that individual case management, in collaboration with
the baby’s PCP, works to assure that diagnosis occurs within three months.
Goal 4: From diagnosis to intervention: To assure that all newborns diagnosed with
hearing loss are referred to…and receive…appropriate early intervention services.
We believe that the Birth Information Network (BIN) statute which is the basis
for hospitals’ reporting nursery screening results to the program should also apply to
hospitals performing diagnostic audiology for infants up to one year of age (the age limit
of the BIN statute). One of the early activities of our project will be the testing of this
interpretation by pursuing routine reporting of hospital diagnoses, from in-state hospitals.
We are collaborating with the New England EHDI states to create interstate public health
agreements for datasharing. To encourage PCPs to refer newborns with hearing loss for
further medical diagnosis, we will, in collaboration with the AAP group, survey PCPs
and ENTs for beliefs and current practices around diagnosis, create and disseminate an
educational message for PCPs to promote genetic, ophthalmologic, and ENT referrals as
appropriate, and test outcomes. To date we have not found a gap between diagnosis and
referral to Early Intervention for babies who have hearing loss. However, we do not have
consistent information about follow-through. We will pursue a formal agreement with Vt
PIP (the early intervention component for young children with hearing loss) to close the
loop of reporting actual enrollment with early intervention. As above, we will expand our
program staffing so that individual case management, in collaboration with the baby’s
PCP and VtPIP, works to assure not only that referral to EI occurs within six months, but
follow-through also occurs.
WORKPLAN
The staff of the project will include the EHDI/HOP audiologist who now manages
both the universal newborn hearing screening/EHDI effort and HOP; a new staff
member, a pediatric nurse, who will manage this proposed project and co-manage with
the audiologist those elements of EHDI which do not require the specific expertise of an
audiologist. The nurse manager will be hired in the first quarter of the project.
6
Goal 1: To put into practice the knowledge that parents of newborns with hearing
loss are the best advisors to the development of systems of care for their children.
Objective 1.1 Hire a project parent advisor, by end of first quarter
We will recruit and hire a parent program advisor, through the Vermont Parent
Infant Program, the statewide early intervention program component for young children
with hearing loss, which already supports parent advisors for children in their program.
The parent will be a member of the project team. Who: Project audiologist, VtPIP
director, co-chairs of Hearing Advisory Council, Newborn Screening Chief. How:
Contract with VtPIP.
Objective 1.2 Complete structured interviews with families by end of fourth quarter
We will design and implement a structured interview with families who have been
through the hearing screening process to identify strengths and weaknesses of their
journey from screening to early intervention. These interviews will inform our project
activities at every level. Who/How: The project parent, in collaboration with Hearing
Council will:
 construct a draft structured interview which will include input about
experiences as well as their suggestions, obtain AHS IRB review (PLAN),
 pilot with three families (DO);
 review and revise (STUDY); and
 interview ten families who have had personal contact with EHDI and/or HOP
staff, compile results, and share with project team and Council (ACT).

Objective 1.3 Utilize quarterly meetings with Hearing Advisory Council to guide project.
We will confer/report quarterly with the existing CSHN Hearing Advisory
Council (created in the early 1990’s and co-chaired by a parent and hearing professional,
and comprised of parents, educational consultants, audiologists) and, especially, its parent
committee. Who/How: The project audiologist, parent advisor, nurse manager, and NBS
chief and CSHN medical director will:
 present and discuss at quarterly meetings. This activity is a PLAN component
connected with all project objectives.
Goal 2: From hospital to rescreen: To reduce the percentage of newborns who,
having screened initially positive for hearing loss, do not receive a timely follow-up
screening.
Objective 2.1 Reduce number of initial reports containing errors or missing PCP and
family contact information by 25% by second quarter year two; 50% by end of year two;
and 90% by end of year three.
Who: Nurse manager; parent advisor; EHDI/HOP director/audiologist.
 We will convene a Screeners group (staff from at least 5 hospitals) by the end of
the second quarter. After gathering input from the project Screeners group
(PLAN),
 we will pilot their recommended strategies in the Screeners’ own hospitals (DO);
 review their experiences, in the Screener group (STUDY); and
7

expand strategies to all hospitals (ACT) by end of year one.
Objective 2.2 Increase the percentage of babies needing rescreening who have HOP
appointments made by discharge to 50% by end of year one, 75% by year two, 90% by
year three.
Who: HOP administrative staff, EHDI director, nurse manager, parent.
 We will devise, after conferring with all three advising groups (PLAN) and
 pilot (DO) two strategies (e.g., reserve appointments at beginning or end of clinic
day; or have nursery call to make each appointment) that adjust HOP scheduling
practices to facilitate the making of HOP appointments for babies before they are
discharged from the hospital.
 We will review our experience (STUDY) and
 move forward with the best strategy (ACT).
Objective 2.3 Increase the number of hospitals using consistent, appropriate messages
and materials for parents about the need for follow-up for babies who do not pass
screening to 9 by end of year two and 13 by year three.
Who: Parent advisor, nurse manager, Hearing Advisory Council parent committee.
 Working with our advisory groups we will develop a consensus message (PLAN),
 draft, review and pilot the message and materials in hospitals (DO),
 review and revise (STUDY), and
 spread materials and message to all birth hospitals (ACT).
Objective 2.4 Complete agreements with two neighboring states (NH and MA), end of
year three.
Who: Parent advisor, nurse manager, Hearing Advisory Council parent committee.
 We will join with the New England EHDI states, our neighbors, to finalize and
implement cross-border agreements to assure reporting, tracking and follow-up of
VT resident babies born out of state, and out-of-state follow-up for other-resident
babies born in VT. This shared effort is already underway, with draft agreements
having been written. The political and legal process in each state will be
different.
Objective 2.5 Direct staff contact with PCP for each baby needing rescreening will be
associated with increasing the percentage of babies with confirmed PCP and decrease
LtRS rate by 50% by end of year one, and increase the percentage rescreened by one
month of age.
Who: Nurse manager.
 We will expand our program staffing so that individual case management, in
collaboration with the baby’s PCP, works to assure that rescreening occurs within
the first month. We will confer with the AAP group for specific strategies for
effective communication with PCP (PLAN);
 we will make a direct contact (rather than just letter) to the PCP of each baby who
needs rescreen, thereby confirming the PCP—or taking steps to identify the
correct PCP—and confirming the need for rescreen, using draft scripts for
contacting PCPs when their patient needs rescreening (DO);
8

we will adjust scripts as needed (STUDY/ACT).
Goal 3: From rescreen to diagnosis: To increase the percentage of newborns who,
having confirmed positive screen for hearing loss, receive a timely audiological
diagnostic evaluation
Objective 3.1 Reduce the LtRS rate by 50% end of year two, and 90% end of year three
Who: All HOP staff; nurse manager.
 HOP is the principal provider of rescreening for babies who do not pass their
initial screen. The capacity and accessibility of HOP to rescreen newborns will be
sustained by supporting necessary staffing levels. HOP staff will study the refer
rates by region to plan any redistributing of staff time and clinics to accommodate
more newborns (PLAN).
 Accordingly, changes will be made in frequency and/or site of clinics (DO).
 The impact on the waiting time for appointments will be reviewed by staff by end
of first year (STUDY),
 and adjustments made (ACT).
Objective 3.2 Geographic accessibility of NICU infants to AABR rescreening and
monitoring will increase to 4 HOP sites by end of year one; 8 by end of year two; and 13
by end of year three.
Who: HOP audiologists (FAHC contractors); HOP/EHDI director.
 In order to rescreen NICU infants according to the new JCIH recommendations,
HOP will add the equipment and training necessary to provide AABR screening
statewide. Preliminary planning suggests HOP will need three AABR/OAE
instruments (PLAN);
 we will purchase one in each of the three project years (DO);
 we will track the distances families need to travel for AABR screening—all will
have HOP or tertiary hospital access (FAHC in VT; Dartmouth in NH), but some
families will need to travel farther (STUDY);
 when all HOP sites have access to AABR, no baby will need to travel farther than
the local birth hospital (ACT).
Objective 3.3 In-state access to ABR diagnosis not needing sedation/anesthesia will
increase by 2 sites end of year one; 6 sites by end of year two
Who: HOP audiologists (FAHC contractors); HOP/EHDI director.
 To address the lack of access to sleep-deprivation diagnostic ABR, we will
expand HOP services to include new diagnostic ABR technology which does not
require infant immobility nor absolute quiet. The equipment is also combined
with OAE as is eminently portable, making is highly appropriate for itinerant
HOP services. The EHDI program has just met with the vendor and observed
several demonstrations of the equipment (PLAN);
 we will purchase one system and adjust our HOP scheduling to permit it to be
utilized at at least half of our sites (DO);
 we will review whether we need more, or fewer HOP sites to be performing
diagnostic ABR (STUDY),
9

and adjust as needed. If other audiologists in local or community hospital
practices develop the ability to perform unsedated ABR diagnosis, HOP will
adjust its sites so as not to create imbalanced competition (ACT).
Objective 3.4 PCPs will report increased information and resources to refer families
whose baby has hearing loss to complete an appropriate medical work-up
Who: All project staff, in collaboration with the MCH director and VT-AAP president.
 Together with our AAP and Council advisory groups we will develop and
promote strategies for the achievement of a timely diagnosis—even when in the
presence of the co-morbidity of middle ear disease. To encourage PCPs to refer
newborns with hearing loss for further medical diagnosis, we will begin with, in
collaboration with the AAP group (PLAN);
 survey PCPs and ENTs for beliefs and current practices around diagnosis (DO);
 based on their responses (STUDY),
 create and disseminate an educational message for PCPs to promote genetic,
ophthalmologic, and ENT referrals as appropriate, and re-survey (ACT).
Objective 3.5 Direct staff contact with PCP for each baby needing diagnosis will be
associated with a decrease LtDX rate by 50% by end of year two, and an increase the
percentage diagnosed by three months of age.
Who: Nurse manager; parent advisor and EHDI/HOP director as needed.
As above, we will expand our program staffing so that individual case management, in
collaboration with the baby’s PCP, works to assure that diagnosis occurs within three
months.
 After conferring with the parent group and the AAP group for their strategy
suggestions (PLAN),
 we will make an individual contact to each PCP whose patient is in need of
diagnosis to describe VT resources for diagnosis of infant hearing loss, and to
offer PCP and family assistance in obtaining diagnosis (DO).
 We will study the effect on LtDX rates and timeliness (by 3 months) of diagnosis,
and re-confer with AAP group to obtain PCP feedback (STUDY), and
 Revise case management methods to reflect feedback (ACT) .
Goal 4: From diagnosis to intervention: To assure that all newborns diagnosed with
hearing loss are referred to…and receive…appropriate early intervention services.
Objective 4.1 All in-state hospitals performing diagnostic audiology will have begun
reporting diagnostic results for infants, by mid year two.
Who: nurse manager; VDH lawyer.
The existing Birth Information Network (BIN) statute which is the basis for
hospitals’ reporting nursery screening results to the program would also apply to
hospitals performing diagnostic audiology for infants up to one year of age (the age limit
of the BIN statute). One of the early activities of our project will be the testing of this
interpretation by pursuing routine reporting of hospital diagnoses, from in-state hospitals.
 A first step will be the design of a simple format by which hospitals may report
their findings; our database is ready to accept this information (PLAN).
10



We will contact their institution attorneys to explain the statute and the
expectation that hospitals will report not only initial screening data but follow-up
and diagnostic results as well (DO).
We will assess effectiveness of that first contact in achieving compliance with
reporting (STUDY),
and provide hospitals with more support and rationale for reporting, if needed
(ACT).
(See objective 2.4, above: Complete agreements with two neighboring states (NH and
MA), end of year three.
 We are collaborating with the New England EHDI states to create interstate
public health agreements for datasharing. The agreements need to include sharing
of diagnostic information and not just screening, as we anticipate obtaining from
in-state hospitals. )
Objective 4.2 Information sharing agreements between the program and VtPIP (early
intervention) will be established by end of year one.
Who: all project staff; VDH lawyer.
To date we have not found a gap between diagnosis and referral to Early Intervention for
babies who have hearing loss. However, we do not have consistent information about
follow-through.
 We will pursue a formal agreement with Vt PIP (the early intervention component
for young children with hearing loss) to close the loop of reporting actual
enrollment with early intervention.
Objective 4.3 Direct staff contact with PCP for each baby diagnosed and needing early
intervention, and direct contact with Vt PIP about child’s participation will be associated
with maintenance of 100% referral to EI throughout project by end of year two, and an
increase in the percentage enrolled by six months.
Who: nurse manager and parent advisor.
 As above, we will expand our program staffing so that individual case
management, in collaboration with the baby’s PCP and VtPIP, works to assure not
only that referral to EI occurs within six months, but follow-through also occurs.
(See related objectives, above)
Overall, project staff will meet weekly.
 VDH-AAP-AAFP-MCH meetings are monthly; we will confer/report at least
quarterly.
 Hearing Council meetings are quarterly.
 The Screener group will meet on an adhoc basis and annually, as they have since
the inception of univeral newborn hearing screening in Vermont.
RESOLUTION OF CHALLENGES
The CDC-funded Children’s Hearing Health System integrated database
needs to be complete for the data quality improvements and streamlining to occur. We
11
expect the database to have been receiving data by the end of the CDC funding period,
June 30, 2008, with adjustments occurring for 2-3 more quarters. However, the initial
activities of the grant will not require use of the database.
The Medical Home and the delicate balance of guidelines/protocols and
patient-physician autonomy. While HOP is the only source of outpatient rescreening
performed by an audiologist, and while most babies needing follow-up are referred (by
their PCPs) to HOP, and while some hospitals call for appointments before discharge,
most hospitals do not, unless there is a PCP order to do so. Similarly, promotion of a
uniform protocol for diagnosis, and of a protocol for the medical work-up of congenital
hearing loss, may be perceived as interference in the medical home. We believe that
accurate, up-to-date, peer-reviewed information, compiled by respected, Vermont-based
colleagues, will go far towards acceptance of new guidelines. VDH has successfully
promoted “The Provider Toolkit”, a well-received set of guidelines, tools (such as
developmental screening tools), current articles, to all PCPs in VT caring for children.
Geographically, HOP is highly accessible to Vermont families, as it is held in 13
sites around the state on an at least monthly basis. Diagnostic ABR, as described in the
introduction, is not available in Vermont except under sedation; three more sites are
nearby in NY, NH, and MA and utilize sleep-deprivation. This grant proposes to address
ABR access, and will utilize HOP as the vehicle.
The EHDI program and HOP are lean programs, and depend upon highly
specialized professionals—audiologists with pediatric training and experience—for
staffing. To sustain fiscal resources, HOP has implemented fee-for-service billing to
insurances and will be changing its billing agent in the next month to a more efficient
agent. In addition, the fee charged to hospitals for newborn screening will be increased
to include a portion of the costs of the hearing screening system—but not HOP costs.
Staff turnover has been infrequent, but when it happens, its impact is powerful and
difficult.
Uncertainty about barriers to reporting. Despite the encouraging
interpretation of the BIN statute, we may find resistance to expanded reporting.
Similarly, although the interstate agreements among New England states has taken many
steps, they are yet to be signed and implemented. Nationally, there continues to be
confusion about the finality of the barrier to communication created by FERPA. The
agreements, however, are a tool to improve reporting, but are not the only tool.
Individual case management, personal contact with families to support them through the
screening-diagnosis-early intervention sequence, can also achieve improved lost-tofollow-up rates. System improvements, however, such as improved reporting, will help
to limit the need for case management to fewer babies.
State positions. As this proposal is being written, Vermont’s executive branch
has announced that the total number of state positions will be reduced by 400 in this year
and next, by the non-filling of vacancies created by retirements. It is possible that we
will not be able to create a new state position, even with federal funding, for the nurse
manager. Our alternative will be to contract with Fletcher Allen Health Care, our tertiary
hospital. We contract with FAHC, Department of Community Health Improvement,
currently for the EHDI audiologist and admin support for HOP. This collaborative
relationship has worked exceedingly smoothly for many years.
12
EVALUATION AND TECHNICAL SUPPORT CAPACITY
The EHDI program director, Stacy Jordan, has led EHDI and HOP since May,
2005, and before that served both as the hearing screening director for the state’s largest
birth hospital and as a HOP clinician for several years. She has also taken the clinical
lead in the development and implementation of the CDC-funded integrated database
project. One of the unique strengths of that project is the integration of initial screening
and clinical HOP services, so that it serves both as a screening database and as a patient
care record. Cynthia Ingham is the Newborn Screening Chief for VDH, overseeing all
newborn screening efforts but directly managing the bloodspot screening, a position she
has held for five years, for most of those years in combination with coordinating the
CSHN Metabolic clinic and program. She is a leader in the New England Regional
Genetics Group (NERRG), and is a co-director of the board of NERGG, Inc., currently.
The program also collaborates with the statistics unit of the Division of Epidemiology,
including the MCH data chief and the Birth Information Network director. Extensive
Information Technology support has been available through the development of the
database project.
ORGANIZATIONAL INFORMATION
Applicant organization: Vermont’s Children with Special Health Needs (CSHN)
program. It is the mission of CSHN to promote the well being of Vermont children with
developmental and special health care needs. Our mission is consistent with the Healthy
People 2010 goals of assuring that "children with special health care needs have access to
a medical home," and that all "states…have service systems for children with special
health care needs." CSHN provides family-centered, community-based, coordinated
services for Vermont children with special health needs and their families through direct
services (clinics), care coordination, financial assistance, family support, and systembuilding activities. The newborn screening program within CSHN is responsible for the
metabolic and universal newborn hearing screening programs. The program provides
oversight to ensure all newborns are screened, and that follow-up care is provided to all
newborns that have had positive screens. CSHN pediatric nurses and medical social
workers are based in regional offices. Staff are involved in care planning and
coordination, including transitions from one care setting to another. Families are referred
to CSHN from Medicaid’s High-Tech program when it is first determined that the child
will need intensive, home-based medical care. CSHN, the applicant organization and
Title V CSHCN program, is a unit within the Division of Maternal and Child Health, VT
Department of Health, Agency of Human Services (AHS).
Cultural Competence: Every AHS employee and major contractor is required to
complete an online training course in cultural competence. Every CSHN employee and
the EHDI program staff have completed this coursework successfully. In addition, the
VT AHEC has just made available a Vermont-specific resource and practice document
about cultural and ethnic groups in Vermont. CSHN’s next quarterly statewide staff
meeting is a workshop on working with families from refugee populations in our clinics.
EHDI Program: CSHN developed and manages the comprehensive EHDI
program with the initial support of a HRSA EHDI grant and the current cooperative
13
agreement from the CDC. All 12 birth hospitals now perform UNHS and report the
results to the EHDI program, which assures follow-up. The CSHN program has, for
many years, supported a Children’s Hearing Advisory Council. Through some members
of the council, the legislature established a study commission in 1999 to recommend
whether the state should implement UNHS. The CSHN director chaired the commission,
which recommended UNHS and immediately implemented the Hearing Outreach
Program, an itinerant OAE screening clinic held at each birth hospital, to make screening
available before UNHS could be in full operation. The VT Association of Hospitals and
Health Systems strongly supported the HOP effort, including seed funding. CSHN
partners with FAHC (the state’s tertiary care hospital) for staffing of this clinic.
Collaboration with Bloodspot screening: The newborn screening program, for
many years being only a bloodspot screening program, is now the organizational unit
within CSHN overseeing both hearing and bloodspot screening; therefore, a single
administrative structure interacts with hospitals and nurseries around these efforts. Both
programs work closely with their over-the-border counterparts (in NH, NY, and MA) for
babies born in one state but living in the other. Comprehensive intervention and support
for VT babies identified through both screening programs is provided through CSHN.
Key Collaboration with AAP: VDH, including CSHN, collaborates closely with
primary care providers through several projects and relationships with the VT Chapter of
the AAP, and the VT AAFP. Monthly meetings of the AAP executive committee and
AAFP president, with the VDH MCH director, also a pediatrician, are held with VDH
MCH leadership to address child health care and systems issues. The EHDI program has
participated in AAP continuing education efforts, and has sought advice from AAP on
EHDI protocol and program needs. With respect to medical homes, CSHN partnered
with the AAP through an MCHB-funded Medical Home grant, and also participated with
AAP in the Medical Home Learning Collaborative II of NICHQ. The CSHN medical
director and Child Development Clinic director(Carol Hassler, MD) who oversees
clinical aspects of newborn screening programs is also the AAP Chapter Champion for
Vermont. Her supervisor, Wendy Davis, MD, is the MCH director and past president of
VT AAP. The current AAP chapter president, Kimberly Aakre, MD, is a developmental
pediatrician who works half-time in the CSHN Child Development Clinic.
Early Intervention: Until the major 2004 reorganization of the (umbrella) VT
Agency of Human Services, CSHN was, for twelve years, also the administrative home
of the state’s Part C program. CSHN social workers continue to staff each of the 12
regional Part C programs, and the CSHN business office continues to process the payer
of last resort bills so that families experience a seamless fiscal system (whether their child
receives care through Part C, CSHN, or both). Our collaboration has continued, even
with Part C in a newly created Department for Children and Families. The specific early
intervention team for children with hearing loss, VT Parent Information Program of the
VT Center for the Deaf and Hard of Hearing, continues to partner with CSHN/EHDI in
direct services to young children and in creating continuing education programs for staff.
Legislation: Vermont does not have a law requiring hospitals to perform newborn
screening. VDH has a statutory responsibility (18 VSA chapter 3 section 115 (b) (3)) for
“early casefinding” on which its newborn screening activities are based. There are
newborn screening regulations which give VDH responsibility for assuring that newborns
are screened and permits charging a fee to hospitals. Hospitals had always understood
14
that the responsibility for collecting and mailing the bloodspot samples had been
delegated to them. Bloodspot results, however, are reported to VDH by the laboratory
with which the state contracts to process the samples. Hospitals have also willingly
undertaken the hearing screening of their newborns. Only one hospital had protested that
reporting the results to VDH was a HIPAA violation. That issue was resolved by
reference to a more recent bill (Act 32 (S. 159) enacted July 1, 2003) directing VDH to
create a “Birth Information Network.” The Birth Information includes congenital hearing
loss as a reportable condition. While hospitals all report hearing screening findings, at
this time the expectation has not been expanded explicitly to include audiologists who
make the diagnosis of hearing loss, nor to out of state hospitals performing screening, and
remains one of the challenges of our proposed project.
Database: Vermont is in its last year of funding from the Centers for Disease
Control to build a tracking database which is integrated into the state’s Child Health
Profile (SPHINX) along with electronic birth certificates, immunizations, lead screening,
death certificates, and WIC; other public health MCH programs will be added over time.
15