Connecticut MCHB EHDI Grant
Project Abstract
Project Title: Vermont's Children's Hearing Identification and Resources Project (CHIRP): Closing the Loop
Project Director: Carol R. Hassler, MD
Phone (802)863-7338
Organization Name: VT Dept. of Health, Children with Special Health Needs
Address: 108 Cherry St., P.O. Box 70, Burlington, VT 05402
Contact Person: Carol R. Hassler, MD
Phone (802)863-7338
Fax: (802)863-7635 E-mail/World Wide Web Address: chassle@vdh.state.vt.us
Project Period: 4 Years
From: 3/31/01 To: 3/30/05ABSTRACTORGANIZATIONAL SETTING.
Vermont's"Children's Hearing Identification and Resources Project (CHIRP): Closing the Loop" will be located within Children with Special Health Needs (CSHN), in the Division of Health Improvement, Vermont Department of Health (VDH). The Project Director will be Carol Hassler, MD, CSHN Director. The project will be carried out within an expanded unit in CSHN currently encompassing the state's CSHN programs, the existing Hearing Outreach Project (a targeted outpatient hearing OAE testing program), and the state's IDEA-Part C program.
PURPOSE.The project's purpose is to assure that all Vermont birth hospitals will participate in UNHS and home-birthed infants will be screened, so that all newborns are screened by one month of age; an aggressively thorough public-health clinical follow-up system to assure that those who need diagnosis receive it by 3 months of age, that those who need early intervention begin it by 6 months of age; strategies to strengthen areas of the comprehensive system, from screening through intervention. The project complements a new cooperative agreement with the Centers for Disease Control and to establish a comprehensive EHDI data and tracking system.
CHALLENGES.In Vermont, the age at diagnosis of hearing loss, 5 1/2 years, must be reduced. Vermont has made some progress towards UNHS; at the end of 2000, six of fourteen (including one in NH) birth hospitals have initiated UNHS. Outpatient hearing testing is available for at risk infants and young children through the Hearing Outreach Project (HOP). With enhancement, HOP will be available for post-nursery follow-up testing and case management for infants not passing their initial screenings. Nationally, the 50% lost-to-follow-up rate for UNHS programs is serious and sobering. This Vermont project will address this challenge through its public health approach and data/tracking system.
GOALS AND OBJECTIVES.Goal 1: All Vermont birth hospitals will screen the hearing of all newborns before discharge, and all home-birthed infants will be screened by one month of age. Four VT birth hospitals will begin UNHS by the end of year1, and the rest by end of year 2. Technical assistance will sustain and improve the capacity of UNHS hospitals to screen. The percentage of known home birthed infants receiving hearing screening will increase.
Goal 2: All VT newborns needing diagnosis of hearing loss will have diagnosis completed by 3 months. HOP will expand its current capacity, in order to provide clinical audiological follow-up OAE testing and aggressive, public health, goal-based case management. Hospitals will be assisted in developing their follow-up protocols for "refer" or missed infants. Infants needing diagnosis will have project case management support to complete testing by 3 mos. Diagnostic services for very young infants will have increased capacity for infant evaluations. The project will decrease the lost-to-follow-up rate, at each milestone (1 month screen; 3 month diagnosis; 6 month intervention) compared with nationally-reported EHDI data, using Tracking Database.
Goal 3: All Vermont infants diagnosed with hearing loss will be receiving appropriate early intervention by six months of age. The age at which infants needing intervention, begin intervention, will be tracked and will progressively improve, through project case management. VT audiology and EI providers will participate in continuing education around best practices for services for infants with hearing loss.
Goal 4: Primary Care Providers will be supported in their role as Medical Home for infants with hearing loss. Every UNHS infant will have a PCP identified in the Tracking Database. The identified PCP will be involved in each step of the UNHS/EHDI; Project clinical case management will communicate and plan diagnostic course with infant's PCP and family. Medical home/PCP will participate in project oversight through advisory council. Professional education efforts will increase awareness of PCPs about the goals of UNHS and early intervention, and provide tools for patient education.
Goal 5: Parents will be partners in all aspects of the project. Parents will receive family to family support at the time of their infant's hearing loss is diagnosed. Parents will participate in project oversight, design and evaluation.
Goal 6: The Tracking Database will serve as both a patient management information system and a source of information about the quality of the system of UNHS/EHDI . EHDI/CDC project staff will select key data elements necessary to meet the JCIH indicators (see text of narrative) and additional medical home and family support indicators. Project staff will enter key information about the course of each newborn, from birth, through screening, follow-up, diagnosis, intervention (as detailed in above sections). Analysis of Tracking Database will form the basis of project reports to Advisory Council and VAHHS. Goal 7: Evaluation and oversight of the project will be accomplished with the guidance of Advisory Council. Advisory Council will be established and functional by summer 2001.
METHODOLOGY.The existing resources of the Hearing Outreach Project will be enhanced to provide thorough, public health clinical follow-up and case management of newborns needing follow-up; directly providing outpatient testing where appropriate, and collaborating with the primary care provider (PCP) medical home, for timely referral to appropriate diagnostic and intervention services. The ability of the system of care to perform diagnosis and early intervention will be assessed by families and providers, and strengthened by continuing education opportunities, establishing credentials for CSHN participation, and facilitating (and providing technical and parental assistance to) an ongoing group of hospital managers overseeing UNHS.
EVALUATION.The Project will be accountable to the Advisory Council of parents and providers for accomplishment of project outcomes. Regular status reports will also be made to the association of hospitals and to the state ICC for the Part C early intervention system. Objective measures of project accomplishments will be based on data from the individual Tracking Database system, using JCIH standards.
TEXT OF ANNOTATIONThe overall goal of the project is to assure that all Vermont newborns with hearing loss are identified and receive timely and appropriate early intervention and treatment, within the timeframes established by JCIH. The project will strengthen existing resources to establish a centralized, public health follow-up assurance system, including the direct provision of follow-up outpatient testing through the Hearing Outreach Project (HOP) and effective case management to assure that quality and timeframes are met.
KEY WORDSUniversal newborn hearing screening; Comprehensive outpatient clinical follow-up; OAE; Public Health Case Management; Assessment and continuing education; Part C collaboration
PROJECT NARRATIVE1. The Purpose of the Project
Our public health goal is the implementation of newborn nursery-based screening of the hearing of all Vermont newborns, and the assurance of thorough and timely follow-up and tracking, through diagnosis and early intervention, of all infants identified with hearing loss. This universal newborn hearing screening system (UNHS) will be integrated into the existing systems of newborn metabolic screening, diagnosis and treatment, for early intervention (Part C-IDEA), and for comprehensive services for children with special health care needs (CSHN: Children with Special Health Needs Title V-CSHCN program within the Vermont Department of Health).
Challenges
Significant congenital hearing loss meets all the requirements for newborn screening: It is a condition with a higher prevalence than other conditions for which newborn screening has been provided historically, is not clinically apparent in newborns without specific screening, bears serious permanent consequences, and demonstrates measurable benefit from early intervention. The prevalence of permanent, bilateral hearing loss is estimated to be 1.2 to 5.7 per 1000 live births, corresponding to about 7 to 40 Vermont births each year, and more with lesser degrees of hearing loss. Hearing screening targeted only to newborns with known risk factors consistently misses half of those with significant congenital hearing loss. Recent studies confirm that intervention needs to be initiated by six months, to give children the best chance for good language development. The clinical results of delayed diagnosis of deafness can include language and academic delays, and psychosocial difficulties. Furthermore, the experience of hospitals, nationally, is that nearly 50% of infants screened in UNHS hospitals and found to need follow-up, were lost to follow-up, confirming that a comprehensive, aggressive, thorough system for follow-up, from re-screening, to diagnosis, to effective intervention within the timeframes recommended by JCIH (October, 2000) is essential. Screening by one month, diagnosis by 3 months, and intervention by 6 months are the goals recommended by the Joint Committee on Infant Hearing (JCIH) to assure that newborns with hearing loss are not missed, and are able to benefit maximally from early intervention and treatment.
The magnitude of the task of establishing UNHS and comprehensive follow-up and tracking in Vermont is described in detail under 6., Needs Assessment: Current Status and Specific Challenges. In summary, however, the challenges in Vermont are those of a state which is beginning UNHS in a cautious, stepwise, voluntary fashion, in the context, however, of a well-established, statewide outpatient hearing testing program (Hearing Outreach Project, HOP) combined with a history of effective universal metabolic screening, and strong early intervention and Title V CSHCN services. In Vermont the average age at diagnosis still (1999) hovers around 5 1/2 years, based on surveys of VT audiologists, self- reports of their newly-diagnosed patients, suggesting the process of detecting hearing loss in children depends greatly on testing performed at school entry, and could be lowered by UNHS. The Vermont Department of Health (VDH) has a statutory responsibility for general "early case-finding," under which VDH and birth hospitals partner to screen all newborns for metabolic disorders. Vermont does not yet have a full, statewide program of universal newborn hearing screening (UNHS) and follow-up. Barriers have included concerns about cost and nursery staffing needs, pediatrician concerns about false positive rates and the impact on families worrying about possible hearing loss, overall cost/benefit compared to other public health, concerns about the high lost-to-follow-up rates at hospitals whose experiences have been published, concerns about the capacity to perform accurate diagnostic audiometry on young infants, and concerns about the capacity to prescribe appropriate amplification for infants. In the absence of UNHS, an outpatient hearing testing program, using OAE and tympanometry, was established, the Hearing Outreach Project (HOP). HOP is a program of itinerant clinics, one site in each of the 13 hospital service areas, staffed by a pediatric audiologist, managed by the Children with Special Health Needs (CSHN) Title V program, and collaboratively funded until June, 2001, by the VT Association of Hospitals and Health Systems (VAHHS), Fletcher Allen Health Care (FAHC), community hospitals, private foundations, the VT Department of Education, and VDH. HOP was envisioned in 1993 by the CSHN Hearing and Communications Advisory Council, a body comprised of parents of children with hearing loss, adult advocates, primary and specialty care providers, and special educators. Although HOP began as a program of outpatient OAE testing targeted to young children at risk of hearing loss, in the absence of UNHS, a number primary care practices and one hospital are referring all their newborns for outpatient screening and follow-up. Currently, six of the thirteen (fourteen, including Dartmouth in Lebanon, NH) Vermont birth hospitals have implemented UNHS programs in their nurseries, with a variety of follow-up protocols for infants who do not pass their initial screenings. The status of UNHS in Vermont is described in detail under Needs Assessment. However, in calendar year 1999, with 6569 births, only 9.4% of infants were screened for hearing loss before hospital discharge.
Rationale and evidence supporting the proposed intervention/demonstration
Vermont proposes a central public health approach to assure that the comprehensive elements of a UNHS and intervention program are accomplished. As the national experience with hospital based screening grows, it has become increasingly clear that the results of screening do not, all by themselves, assure that infants will receive timely and appropriate diagnosis and intervention. Indeed, national Early Hearing Detection and Intervention (EHDI) data collected by the Centers for Disease Control (CDC) and presented at the Atlanta EHDI grantee meeting, November, 2000, have shown that nearly one-half of infants screened and found to need follow-up do not receive it at all, let alone, within the recommended timeframe. In Vermont, the principal question of the statewide hospitals' (VAHHS) leadership, in response to a presentation by the CSHN director about the need for UNHS, was, in essence, "And, then what?" VT hospital CEOs clearly view their uncertainty of the current capacity of the "system" to assure that screening will result in timely and meaningful benefit to identified infants as a deterrent to the implementation of hospital screening. Additional questions asked included the tangible commitment of public funding (Medicaid, Title V, special education) sufficient to support the needed services for the children whose diagnoses will be made at increasingly younger ages. This project proposes to build upon the existing public health (HOP; statistical support), early intervention (Part C) and Title V (CSHN) resources, to assure that the promise that begins with UNHS, the promise of identification and early intervention, is met for all Vermont infants.
Anticipated benefit
In summary, the goals and objectives of this project are to provide the comprehensive public health assurance that universal newborn hearing screening, of all infants, will result in the identification of infants needing follow-up by one month, diagnosis of infants by three months, and initiation of parent to parent support and early audiologic/educational intervention and management for infants with confirmed hearing loss, by six months of age. Additionally, the project will assess long-term benefit at 12 and 24 months after diagnosis.
2. Organizational experience and capacity.
CSHN, the organizational location of the proposed project, has a strong history of experience and leadership in the care of children with hearing loss. It has transformed its traditional Hearing Clinics, from ENT clinics for otitis media, to a focus on the earliest possible identification of hearing loss, under the guidance of its CSHN Hearing and Communication Programs Advisory Council. The council is exemplary in its longevity, activity, and representation, including parents, Deaf adults, audiologists, early interventionists, speech/language pathologists, primary care physicians, and administrators. The Council has guided the transition of the CSHN Hearing program from an ENT/Otitis Media clinic to a comprehensive team-based consultation model, has surveyed audiologists to determine the average age at diagnosis of hearing loss in children, has proposed the HOP model for outpatient OAE testing to find children at a younger age, when it became apparent that Vermont was not going to move quickly toward UNHS, and has spearheaded public and professional awareness about hearing loss risk factors. CSHN also chaired the legislatively-formed UNHS Study Commission in 1999which recommended a plan for UNHS in hospitals and central public health assurance and follow-up. CSHN now manages the HOP (described in more detail elsewhere), at 13 sites around the state, and has established the HOP advisory council, comprised of representatives from the contributing VAHHS hospitals, parents, and primary care physicians. The HOP council meets several times a year, to review data of the clinical work of HOP, discuss operational management and collaboration with hospitals (most HOP sites are in community hospitals), budgetary concerns, and goals. Each meeting opens with parents of a child with hearing loss telling their story, their journey from concern to diagnosis to intervention. A variety of services for children who have a permanent hearing loss is available through CSHN, including Parent/Child Support Groups, the Hearing Aid Support Services Program ( through which CSHN assists families with the prescription and purchase of hearing aids for children up to 6 years old), and the CSHN Hearing Aid Loan Bank. In addition, the CSHN Share Program helps families with the after-insurance cost of care prescribed by CSHN programs. Both programs will help support UNHS families in obtaining necessary testing and treatment.
In addition, VDH has many years of experience in managing the current system of universal newborn metabolic screening, with many parallels to a UNHS system. The metabolic screening system achieve a high percentage of timely screening of newborns through the collaborative efforts of VT birth hospitals and lay midwives. Lab reports are returned to primary care physicians (PCPs) and the state's newborn screening director, who personally follows-up on every abnormal result, to assure confirmation and entry into treatment. The CSHN Metabolic Clinic is available for ongoing specialty care, care coordination, and health care support for identified children. The entire system is guided by the Newborn Screening Advisory Committee.
3. Administrative Structure
As mentioned above, the project will reside administratively and clinically within CSHN (the state CSHCN program), in VDH. CSHN's extensive experience with hearing services is described above. The project will enable HOP to expand to function as a comprehensive, accessible (both geographically and financially--there is no cost to families) source of clinical hearing follow-up testing and case management to assure diagnosis and intervention for all Vermont newborns with hearing loss. Hearing programs at CSHN are integrated (see above section) with other clinical and support programs, including CSHN's payer of last resort function, which utilizes Title V dollars to help families with after-insurance balances for authorized care.
In addition, CSHN is the home of Vermont's Part C early intervention program, the Family, Infant and Toddler Project (FITP). The CSHN director supervises the FITP director and the medical social work and nursing supervisors. CSHN medical social workers are members of every regional FITP team; in addition, one CSHN MSW, a person with severe hearing loss, provides especially meaningful support to many FITP and CSHN families whose children have hearing loss. Administrative and clinical integration with FITP will help to assure the UNHS goal of early intervention by 6 months of age, by minimizing administrative complexity.
CSHN is a unit with in the VDH Division of Health Improvement, whose director is also the state MCH director and who supervises the CSHN director. In turn, the MCH director reports to the Commissioner of Health. Other divisions in VDH are important links for the project. The MCH statistician, who will contribute time to the project, is part of the Division of Health Surveillance. There is a rapidly growing Information Systems unit This unit is integrally involved in the EHDI/CDC data/tracking grant, just received by CSHN. VDH is one of several departments within the Agency of Human Services (AHS), including (among others), Aging and Disabilities, whose Division of Vocational Rehabilitation is regularly represented at CSHN advisory meetings, and the Department of Prevention, Access, Transition, and Healthaccess , containing the Medicaid agency. The AHS Secretary reports to the Governor.
4. Available resources
Regionally, Vermont is bordered by two states (New York and Massachusetts) with UNHS legislative mandates, and by NH which has received an earlier MCHB-UNHS implementation grant. Cross-border collaboration is needed with all three states, particularly NH where about 600 VT resident babies are born each year, and the location (Dartmouth; Lebanon, NH) is the source of most tertiary care for VT families living on the east "coast" of VT. Dartmouth has announced intention to begin UNHS in early 2001, an event that may well serve as an incentive to other VT and NH hospitals.
Currently, Vermont must turn to her tertiary care center, FAHC, affiliated with the University of Vermont, and two tertiary "border" hospitals at Dartmouth and Albany Medical Center, to provide the diagnostic audiometry for very young infants. Although some community-based audiologists have diagnostic ABR capability, the requirement for sedation for the youngest infants means that infant ABRs can be performed most safely in the hospital setting. With the goal of confirmatory diagnosis by 3 months of age, at this time diagnostic options with anesthesiology support are limited to the three tertiary care centers.
Since 1993, Vermont has had a statewide early intervention system through Part C, IDEA. The Family, Infant and Toddler Project (FITP) serves over 700 children, birth to age three (about 3% of the population). Children identified with hearing loss are categorically eligible for services. FITP enhances services for children with hearing loss through its funding of the Vermont Parent Infant Program (VPIP), a statewide early intervention program of assessment, home-based specialized instruction, and parent support, for infants and children to age five, who are deaf or hard of hearing. VPIP is one of several hearing intervention programs contained administratively within the Vermont Center for the Deaf and Hard of Hearing, based out of the Austine School in Brattleboro, a day and residential school for deaf students. Other Vermont Center resources for families and children with hearing loss include the regional Educational Consultants for the Deaf and Hard of Hearing, Interpreter Services, and, most importantly for families, a statewide Family Support Services Coordinator who provides parent to parent support to families. Another resource for parent support for families whose children have any special health need is Parent to Parent of Vermont (P2P), an established, statewide program of mutual parent support, to which CSHN makes an annual grant, to help support its parent matching activities.
Two very important national sources of support and motivation help states implement UNHS systems. The first is the support of the Maternal and Child Health Bureau through the dissemination of the monograph and website, "Early Identification of Hearing Loss: Implementing Universal Newborn Hearing Screening Programs" from the National Center for Hearing Assessment and Management (NCHAM) at Utah State University. This manual was helpful in persuading the Vermont Study that UNHS was possible. Secondly, the publication of the Joint Committee on Infant Hearing (JCIH) "Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs," representing the consensus of member organizations in audiology, speech/language pathology, pediatrics, otolaryngology and the Council on Education of the Deaf, is a thorough, compelling and practical document, and is particularly helpful in its elucidation of roles and responsibilities of partners in the system, as well as in its definition of benchmarks and measurable quality indicators for every point along the path towards a UNHS system. This grant proposal adopts the JCIH recommendations as benchmarks and indicators for our VT system.
Existing Project Staff and Resources:
CSHN is a new recipient (October, 2000) of a CDC Cooperative Agreement for EHDI. This grant focuses on developing state capacity for a data system to track each newborn, from birth to screening to diagnosis to intervention and to provide aggregate information about system quality, follow-up rates and timeliness, and findings. The grant will enable the state to build or adapt a Tracking Database, to serve a function capable of tracking 6,500 births per year, and to link and eventually integrate with newborn metabolic screening and electronic birth certificate databases. Inputs will begin with hospital births and update as screenings, diagnosis, and interventions occur; the database will also serve as the patient case management tool for project staff (e.g., for identifying infants in need of outreach), and as a source of system-wide and hospital-wide feedback for system quality assurance. . The department's Information Services unit has grown significantly in resources in the past year and is embarking upon a complete revision of the department's Manangement Information System, named SPHINX. Other currently available resources, described elsewhere, include HOP, CSHN programs and family supports (coordination and financial assistance), and well-developed sources of guidance (advisory councils). Community and state supports are also described elsewhere.
The CSHN director is a pediatrician with twenty years of experience in team-based care for children with special health care needs, five as director of multidisciplinary clinics in a tertiary care setting, and fifteen as director of the CSHN program (and its predecessor program). The current HOP audiologist is an experienced pediatric audiologist. Statistical support to HOP is provided by a VDH, Division of Health Surveillance staff member involved in state MCH monitoring and analysis. The HOP program coordinator is a clinical nurse with many years of public health administration experience.
Physical resources include project location at the central offices of VDH, within the CSHN space which includes clinical examination rooms, audiologic OAE and tympanometry testing equipment. Itinerant HOP clinic space is being provided at hospitals, a Parent/Child Center, and local VDH offices, covering all of the state's hospital service areas.
Financial access to medical care related to hearing loss appears quite good. Vermont has a very high level of health care coverage for children, reported at >95%. In large measure, this level of coverage is due to the inclusion in Medicaid eligibility of children (to age 18) whose families have incomes up to 300% federal poverty level, or about $51,000 for a family of four. As VT primary care physicians serving children universally "take Medicaid", children have excellent access to primary care "medical homes", as well as to a very broad set of benefits, including services needed by children who have hearing loss. In addition, CSHN fills some of the gaps through its Hearing Aid Purchase program and its Cost Share program.
Data Integration Opportunities Three immediate opportunities for linkage include the Hearing Outreach Project, the Family, Infant and Toddler Project (both described above) and the statewide universal newborn metabolic (bloodspot) screening program. The Vermont Department of Health has many years of experience managing the current system of metabolic screening, with many parallels to an EHDI system, collaborative efforts between hospitals and the central system program director, timely communication among hospitals, the central program, and primary care physicians about those newborns needing immediate follow-up, public health outreach when needed to assure that no newborn is lost to follow-up, informed consent procedures (written informed dissent), referral to intervention and treatment with the support of CSHN in the areas of care coordination and financial assistance, analysis of screening data with respect to quality assurance measures (such as inadequate samples or delays in submission), with feedback and technical assistance to screening hospitals, and system oversight by the Newborn Screening Advisory Committee. Finally, the Tracking Database will be linked to birth certificates and incorporated into the Vermont Department of Health's emerging comprehensive client management information system, SPHINX. Although in its earliest stages, SPHINX's development is "on a fast track".
5. Identification of the target population and service availability.
The ultimate target population is all VT resident newborns, including home-birthed infants. In addition, activities target parents and providers of key elements of the UNHS system, such as hospitals, audiologists serving Vermont infants and young children, nursery managers, and early interventionists. Primary Care Providers and lay midwives are also included. Service availability and service needs are discussed extensively in the following Needs Assessment section, and proposed activities are discussed under Goals and Objectives. In summary, however:
|
TARGET POPULATION |
PROPOSED ACTIVITIES |
|
Newborns |
UNHS and comprehensive clinical follow-up and case management |
|
Parents |
Family-centered educational materials |
|
Meaningful input into project design and outcomes |
|
|
Parent to parent support |
|
|
Primary Care Providers |
Linkages to the system assuring support of their medical home role |
|
Advisory council membership |
|
|
Hospitals |
Technical assistance to strengthen UNHS activities |
|
Nursery UNHS Managers |
Inservices and support group |
|
Audiologists |
Continuing education |
|
Provider agreements |
|
|
Early Interventionists |
Continuing education |
|
Lay Midwives |
Outreach |
6. Needs assessment: Current status and specific challenges
Status of implementation of UNHS before hospital discharge.
Since the report of the Study Commission to the legislature, in January, 2000, five Vermont hospitals, delivering about one-fourth of VT newborns, have implemented UNHS in their nurseries, utilizing a variety of screening technologies follow-up/tracking methods (see table, below). In discussions with CSHN staff, VT hospital administrators have cited several recurring factors posing barriers to initiating UNHS, including the lack of nursery staff time to perform yet another task, the cost of the equipment, and lack of consistent third party reimbursement. For two UNHS hospitals, HOP provides clinical follow-up, from confirmatory outpatient OAE testing, through case management for diagnosis and intervention, for their newborns who do not pass their initial screening. In other areas, hospitals defer the follow-up planning to the infant's PCP, some of whom choose to refer to HOP and some to local audiologists. One hospital (Springfield) performed in-nursery UNHS, but abandoned this activity in November, 1999, and now refers all its newborns to HOP, with the acknowledgement, however, that a monthly outpatient screening clinic cannot meet the standard timeline for screening (i.e., all cannot be screened by one month of age) nor for percentage screened (only about 75% of newborns keep their appointments for screening). HOP also provides clinical monitoring for at-risk NICU infants from FAHC. The expansion of HOP to have the capacity for statewide UNHS clinical follow-up and aggressive and thorough case management is the central feature of this grant proposal.
The current status of hospital-based UNHS is summarized below:
|
HOSPITAL |
ANNUAL VT |
UNHS STATUS, |
FOLLOW-UP |
|
Northwestern |
440 |
Active |
Referral to VDH |
|
Southwestern |
345 |
Active |
Referral to VDH |
|
North Country |
215 |
Active |
PCP choice |
|
Northeastern |
273 |
Active |
PCP choice |
|
Copley |
245 |
Active |
PCP choice |
|
Porter |
241 |
Active |
PCP choice |
|
Fletcher Allen |
2159 |
Under discussion |
|
|
Gifford |
247 |
Under discussion |
|
|
Rutland Regional |
592 |
Equipment pending |
|
|
Springfield |
192 |
Early discussion |
|
|
Central Vermont |
484 |
No discussion |
|
|
Brattleboro Memorial |
279 |
No discussion |
|
|
Grace Cottage |
17 |
No discussion |
|
|
Dartmouth Hitchcock |
398 |
Planned for early 2001 |
NH protocol pending |
|
Other Out of State |
310 |
|
|
|
Home births |
137 |
|
|
|
Total UNHS Births |
1759 (27%) |
|
|
|
TOTAL VT BIRTHS |
6569 |
|
|
Because some of the UNHS hospitals began screening in mid-2000, it will not be until 2001 that the actual percentage of 27% of newborns screened can be anticipated. The dimensions of the UNHS challenge, therefore, encompass the eight non-UNHS birth hospitals, 137 annual home births, and the 73% of VT newborns who will not be screened if no new hospitals initiate UNHS.
Linkage to medical home.
Vermont pediatricians were skeptical initially to the benefits of UNHS, based upon comments offered after our UVM Department of Pediatrics Grand Rounds in 1996. PCPs cited the concerns of Bess and Paradise particularly about the high rate of false positives and the cost, in dollars and parental anguish, in following up all the infants who did not pass initially. More recently, one of the FAHC neonatalogists authored and distributed a research paper in which he compared, unfavorably, the relative benefits of UNHS to those of a folic acid campaign. On the other hand, community based pediatricians have been instrumental, in every instance, to their local hospitals' implementing UNHS. For the four VT hospitals now implementing UNHS, the local pediatrician indefatiguably carried the mission to hospital administrators, nursing directors, and community philanthropies, until successful. In addition, a growing number of VT practices in non-UNHS service areas refer all their newborns to HOP for outpatient OAE testing, and in UNHS areas, refer their patients needing follow-up to HOP. In HOP's current clinical practice, when families self-refer, staff ask during the intake conversation for permission to contact the child's PCP for confirmation of the referral. HOP testing results are communicated with the family and PCP, including the recommendation for further diagnosis, if needed, followed by phone contact to assure that diagnostic testing has occurred. Hospitals implementing UNHS have varied in their protocols for follow-up. Some (such as Porter) defer follow-up entirely to the PCP. HOP has used several strategies to promote the JCIH standards for follow-up among PCPs, while making referral to HOP an easy and accessible source of follow-up and assurance. However, this aspect of a comprehensive system of UNHS and follow-up remains a challenge to be addressed by this grant.
Audiologic diagnosis by 3 months of age.
At this writing, only those infants who do not pass their hospital screening and are subsequently referred to HOP, either directly by the hospital or by their PCP, enter into a system of clinical follow-up and case management through diagnosis. If the referred infant does not pass the HOP testing, the HOP audiologist explains to the parents about the need for comprehensive diagnostic testing, and communicates with the PCP about the need recommendation and the resources for testing. CSHN utilizes Title V funds to assist families with the considerable costs of testing. HOP staff frequently, however, have to pursue feedback (from the audiologist, PCP, or parents) about the results of the diagnostic testing, in order to assure that no infant has "fallen through the cracks." The current HOP data system contains documentation of the course of each infant referred. Another system concern is the capacity of the state's audiology providers to accommodate the increased numbers of infants needing diagnosis, and to utilize age-appropriate infant tests (diagnostic ABR with sleep deprivation/sedation/anesthesia). Therefore, the challenges to achieving audiologic diagnosis by 3 months of age include: Variation in the referral protocols for diagnosis, capacity for audiologic diagnosis of infants, the need to keep post-nursery "refer" (i.e., screens not passed) rates low to make best use of diagnostic capacity, and strengthening HOP to accommodate potentially all VT newborns needing clinical follow-up and case management to assure diagnosis and intervention.
Ongoing family-to-family support.
Currently, when infants are identified with hearing loss, the diagnosing audiologist most often refers to the VPIP (described above) and its family support coordinator. VPIP, in turn, links infants and their families to the statewide Part C early intervention program, FITP. Through FITP, most families receive service coordination from a Community Resource Parent, a parent trained in care coordination and IFSP development. From 12-2-98 to 12-1-99, 11 FITP enrolled children (1.4% of 775) were eligible because of hearing loss. An unknown number of children had hearing loss in addition to other chronic conditions. Continuing challenges include the capacity of the VPIP parent support network to accommodate families of infants diagnosed as newborns, and linkages with the parent support available through FITP, VPIP, and Parent to Parent (also described above).
Enrollment in EI by 6 months.
As described above, currently, the diagnosing audiologist refers infants to VPIP, and VPIP links with FITP (Part C). Together with the family, the infant's IFSP is developed and implemented with the assurance of the Part C entitlement program. Several VT audiologists are experienced in the prescription and fitting of amplification for infants, including new digital technology. Financial access to digital hearing aids has improved with the addition of a new payment level by Medicaid, and by CSHN payer of last resort support. Medical evaluation by an otolaryngologist is often recommended by the audiologist; pediatric ENT services are available at tertiary care centers, and in a few VT communities. Consideration of cochlear implant is also available at the tertiary care centers, in VT and New England. Several remaining challenges include: A process for assurance of timely referral and initiation of specialized early intervention; system capacity for prescribing appropriate amplification for the youngest infants; consistent and timely development of a cohesive, collaborative IFSP and intervention team. Finally, the project plans to document the status of identified infants 12 and 24 months after diagnosis.
Data and Tracking System Needs and Current Status
As described above, CSHN is a new recipient (October, 2000) of a CDC Cooperative Agreement for EHDI, focusing on developing the state's capacity for a data system to track each newborn, from birth to screening to diagnosis to intervention and to provide aggregate information about system quality, follow-up rates and timeliness, and findings. The grant will enable the state to build or adapt a database, to serve a function capable of tracking 6,500 births per year, and to link and eventually integrate with newborn metabolic screening and electronic birth certificate databases. Inputs will begin with hospital births and update as screenings, diagnosis, and interventions occur; the database will also serve as the patient case management tool for project staff (e.g., for identifying infants in need of outreach), and as a source of system-wide and hospital-wide feedback for system quality assurance. The state has the basic building blocks for such a system: HOP currently has a small, Access-based database managed within the HOP program; metabolic screening has an entirely separate, off-site database; electronic birth certificates are being used but are not timely enough to use as the basis for triggering in-hospital screening; FITP has a small, local database in which is entered the annual "December 1 Child Count" data. CSHN has had preliminary contact and presentations from the OZ system, and will explore it further under the activities of the EHDI grant. All infants will have their hearing screening, diagnosis and intervention status tracked and assured through a central tracking system, which combines non-personally identifiable data from hospitals and child-specific data on infants whose hearing detection and intervention care is provided through HOP. Briefly, the EHDI/CDC data-tracking project will integrate magnificently with the clinical follow-up and case management focus of this proposed project. The EHDI project will establish agreements with screening hospitals to collect, centrally at the project level, non-personally-identifiable information on the infants for whom the hospitals have performed one or more screening and follow-up steps. The information will be keyed to the JCIH Benchmarks and Associated Quality Indicators. (These indicators, while not establishing a management information file for each infant, nor linked to the birth certificates, still provide a comprehensive picture of the quality, timeliness and thoroughness of each hospital's screening (and follow-up) process. The EHDI project will strengthen the individual case tracking capability of HOP; when infants are referred to HOP at any point of the sequence (e.g. home-birthed infants or infants discharged without screening referred to HOP for initial screening; infants referred for coordination of their diagnostic testing), their pre-referral data will become part of their individual patient record and Tracking Database. Their course of care, once enrolled in HOP, will also be part of their continuing record/database. The EHDI project will develop a method to integrate the non-personally identifiable tracking information reported by hospitals, and the individual (and confidential) tracking information from HOP, into an aggregate whole, which, when analyzed, describes the status of the EHDI system according to JCIH Benchmarks and Indicators, indicates areas needing improvement, and which can be used to suggest improvement strategies.
Further needs assessment focusing on Increasing Capacity and Quality of the UNHS Elements is also planned within the activities of this project. These include: Focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the system serving their children; survey of the VT audiologists serving children to ascertain their current practices and their self-reported interest in and need for continuing education around the audiologic care of infants; focus group of the nursery managers currently overseeing UNHS in their hospitals and those whose hospitals are anticipating UNHS to identify common concerns and successful strategies. The findings will guide project design of continuing education for audiology and early intervention providers.
7. Collaboration and Cooperation
These aspects are described much more fully under sections 2, 3, and 4, above. The project's location within CSHN facilitates its collaboration with other entities which are organizational "first degree relatives" to CSHN. These include FITP, the Part C program (administratively within CSHN), MCH (parent organization to CSHN), Education (co-lead agency for Part C), Parent to Parent of Vermont (grantee of CSHN), VPIP (grantee of Part C), Vermont Center for the Deaf and Hard of Hearing (umbrella agency of VPIP and Family Services program); Medicaid (CSHN director serves on several Medicaid committees), and newborn metabolic screening (CSHN metabolic program). In addition, CSHN and HOP currently have two committees advising the programs on hearing management issues; the broad composition of the councils is described under Organizational Experience Capacity, above. The project will turn to both councils for guidance and will report to them at quarterly meetings on project progress.
Goals and Objectives
|
Goal 1: All Vermont birth hospitals will screen the hearing of all newborns before discharge, and all home-birthed infants will be screened by one month of age |
|
Objective 1.1: Four VT birth hospitals will begin UNHS by the end of year1, and the rest by end of year 2 |
|
Activity 1.1.1 Project director will continue to make presentations semiannually to VAHHS hospital CEO's |
|
Activity 1.1.2 Project staff will make presentations to key non-UNHS hospital decision-makers to encourage their planning and implementation of UNHS |
|
Activity 1.1.3 Small grants to hospitals will assist in the purchase of equipment |
|
Activity 1.1.4 Project staff and parent contractors will provide technical assistance to hospitals developing UNHS protocols (equipment selection, informed consent, 2-step screening protocols, screening for risk/monitoring; communication with parents and PCPs about results) |
|
Objective 1.2 Technical assistance will sustain and improve the capacity of UNHS hospitals to screen |
|
Activity 1.2.1 Project staff will establish a nursery UNHS managers' group and develop annual inservices |
|
Activity 1.2.2 Project staff will use the EHDI/CDC Tracking Database to analyze hospital UNHS performance (timeliness, false positives, misses, "refers" ) on a hospital, by hospital basis, provide data feedback to hospitals, and suggest improved practices |
|
Activity 1.2.3 The project will facilitate a meeting of hospital representatives and VT third party funding sources, including Medicaid, to discuss the potential coverage options for the costs to the hospitals |
|
Activity 1.2.4 All births will be entered into Tracking Database (dob; demographics; PCP) |
|
Activity 1.2.5 Results of all hospital screens (methods, results, age at testing, known risks, plan for follow-up if "refer") will be reported to project and entered into EHDI/CDC Tracking Database |
|
Objective 1.3 The percentage of known home birthed infants receiving hearing screening will increase |
|
Activity 1.3.1 (1) Metabolic samples and/or (2) birth certificates of known home-birthed infants will be matched to infants OAE-tested by HOP; infant entered into Tracking Database. |
|
Activity 1.3.2 Project staff will contact PCP if there is no record of HOP hearing testing for a known home-birthed infant, to schedule infant for HOP outpatient OAE testing within one month of identification of birth |
|
Activity 1.3.3 A lay midwife will be included as an advisory council member. |
|
Activity 1.3.4 The project staff will expand the content of contacts with lay midwives around metabolic screening, to include hearing screening |
|
Activity 1.3.5 Project staff will present to parent organizations associated with home births (e.g., La Leche League) |
|
Activity 1.3.6 Results of all home-birth HOP tests will be entered into Tracking Database; % screened |
|
Goal 2: All VT newborns needing diagnosis of hearing loss will have diagnosis completed by 3 months |
|
Objective 2.1 HOP will expand its current capacity, in order to provide clinical audiological follow-up OAE testing and aggressive, public health, goal-based case management |
|
Activity 2.1.1 HOP clinical and case management staff time will expand through grant support |
|
Activity 2.1.2 The project will build upon current HOP third party billing efforts to capture available payments for visits, to maintain HOP services at no direct cost to families. |
|
Activity 2.1.3 Frequency of itinerant clinics at each site will be increased to meet the necessary timeliness goal |
|
Activity 2.1.4 Infants referred to HOP (missed screening or "refer") will be seen by HOP pediatric audiologist for OAE testing and tympanometry, and screened for the risk of later-onset hearing loss, within one month |
|
Activity 2.1.5 HOP testing outcomes will be discussed with the family, and with permission, reported to the PCP, and the hospital and/or lay midwife, and entered into the Tracking Database. |
|
Objective 2.2 Hospitals will be assisted in developing their follow-up protocols for "refer" or missed infants |
|
Activity 2.2.1 Among hospitals and PCPs, the project will promote referral to HOP as the easiest, most thorough, most proactive and consistent resource to assure comprehensive post-nursery follow-up. |
|
Activity 2.2.2 Project staff will help hospitals to develop failsafe protocols and agreements for clinical follow-up in their UNHS procedures. Options: Hospitals refer infants needing follow-up to clinical HOP clinical follow-up program, and notify PCP; or, hospitals defer to PCP for follow-up and merely notify HOP (and enter into the Tracking Database) |
|
Objective 2.3 Infants needing diagnosis will have project case management support to complete testing by 3 mos. |
|
Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results) |
|
Activity 2.3.2 HOP proactively pursues the results of the diagnostic testing, to assure that the testing is accomplished and communicated by three months. |
|
Activity 2.3.3 When an infant has been referred to a diagnostic center (either directly by HOP or by the PCP, with HOP case management), HOP facilitates family access through CSHN financial assistance, within Cost Share guidelines. |
|
Objective 2.4 Diagnostic services for very young infants will have increased capacity for infant evaluations |
|
Activity 2.4.1 The Advisory councils will review and adapt the new (expected January, 2001) Colorado standards for appropriate methods of hearing diagnosis in infants |
|
Activity 2.4.2 Diagnostic programs/centers which meet the standards will be invited to participate (through provider agreements) in the hearing screening follow-up network and will be able to receive CSHN after-insurance coverage of their services to infants needing hearing diagnosis. |
|
Activity 2.4.3 Clinical standards agreements will be achieved with diagnostic centers re: awareness of target age of 3 months; timeliness of seeing infants referred by program; reporting missed appointments so program can follow-up; reporting results and recommendations back to program and PCP |
|
Activity 2.4.4 The project will identify potential new diagnostic sites, and help them to identify their need for resources to meet the practice standards |
|
Objective 2.5 The project will decrease the lost-to-follow-up rate, at each milestone (1 month screen; 3 month diagnosis; 6 month intervention) compared with nationally-reported EHDI data, using Tracking Database |
|
Activity 2.5.1 Missed appointments will be pursued and case managed by project coordinator (may include outreach to parents and PCPs, assistance with accessing Medicaid transportation, special arrangements for home HOP visits when necessary; public health nursing referrals; financial assistance) |
|
Goal 3: All Vermont infants diagnosed with hearing loss will be receiving appropriate early intervention by six months of age |
|
Objective 3.1 The age at which infants needing intervention, begin intervention, will be tracked and will progressively improve, through project case management |
|
Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support. |
|
Activity 3.1.2 Project case management will faciliate connections with needed intervention services |
|
Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission). |
|
Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. |
|
Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. |
|
Activity 3.1.6 Tracking Database will have entries for age at diagnosis; age at FITP/VPIP enrollment; age at IFSP; status at 6, 12, and 24 months post-diagnosis. |
|
Activity 3.1.7 Project case management offer CSHN financial assistance with costs, to eliminate barriers to timely access of early intervention |
|
Objective 3.2 VT audiology and EI providers will participate in continuing education around best practices for services for infants with hearing loss |
|
Activity 3.2.1 Project will establish audiology/VPIP/FITP/parent focus group to gather information and guidance about the content of continuing education for EI providers |
|
Activity 3.2.2 Project will integrate continuing education efforts with Part C training activities |
|
Activity 3.2.3 Modeled on CSHN nutrition network, project will offer inservices to community based audiologists to enhance their skills in the audiologic and amplification care of infants, to enable them to receive referrals from the project. |
|
Activity 3.2.4 Project will collaborate with nationally-funded UNHD.EHDI technical assistance centers, to organize and present a major, interdisciplinary early hearing intervention conference in year two and year four |
|
Goal 4: Primary Care Providers will be supported in their role as Medical Home for infants with hearing loss |
|
Objective 4.1 Every UNHS infant will have a PCP identified in the Tracking Database |
|
Activity 4.1.1 UNHS hospitals will note name of PCP with their screening reports |
|
Activity 4.1.2 When infants are referred to HOP for clinical audiologic follow-up and case management, parents will be interviewed about their PCP and information entered into Tracking Database |
|
Activity 4.1.3 Project staff will request and update permission from parents to communicate with their infant's PCP with all necessary testing reports and recommendations |
|
Objective 4.2 The identified PCP will be involved in each step of the UNHS/EHDI; Project clinical case management will communicate and plan diagnostic course with infant's PCP and family |
|
Activity 4.2.1 UNHS hospitals will report screening results to PCP,and to project for Tracking Database |
|
[Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results)] |
|
[Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support.] |
|
[Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission).] |
|
[Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. ] |
|
[Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. ] |
|
Objective 4.3 Medical home/PCP will participate in project oversight through advisory council |
|
Activity 4.3.1 PCPs will continue to be members of the advisory council(s) |
|
Objective 4.4 Professional education efforts will increase awareness of PCPs about the goals of UNHS and early intervention, and provide tools for patient education |
|
Activity 4.4.1 Project staff, in collaboration with PCP input from advisory council, will develop educational messages (e.g. grand rounds; mailings) to the PCP community about the needs for hearing screening; risk factors; hearing developmental milestones, best practices for follow-up and intervention |
|
Activity 4.4.2 Project staff, in collaboration with PCP and parents, will adapt national parent education material about UNHS, to be made available by PCPs to their families |
|
Goal 5: Parents will be partners in all aspects of the project |
|
Objective 5.1 Parents will receive family to family support at the time of their infant's hearing loss is diagnosed |
|
Activity 5.1.1 Parents will lead advisory council in revisiting the discussion (first discussed at Study Commission) about the timing of referral for direct parent-to-parent support (i.e., pre- or post-diagnosis) |
|
Activity 5.1.2 Project will offer referral to Family Support Services and Parent to Parent, at time of diagnosis |
|
Activity 5.1.3 Parents will co-present with staff at project inservices, to emphasize value of support and family-centered care practices |
|
Activity 5.1.4 A small grant will enhance Family Support Services' capacity to provide support |
|
Activity 5.1.5 Tracking Database will record age at referral to family to family support |
|
Objective 5.2 Parents will participate in project oversight, design and evaluation |
|
Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%) |
|
Activity 5.2.2 Parent stipends will be funded to enable parents to participate in project advisory functions |
|
Activity 5.2.3 The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview |
|
Goal 6: The Tracking Database will serve as both a patient management information system and a source of information about the quality of the system of UNHS/EHDI |
|
Objective 6.1 EHDI/CDC project staff will select key data elements necessary to meet the JCIH indicators (see text of narrative) and additional medical home and family support indicators |
|
Activities are those of the EHDI/CDC project |
|
Objective 6.2: Project staff will enter key information about the course of each newborn, from birth, through screening, follow-up, diagnosis, intervention (as detailed in above sections) |
|
Objective 6.3 Analysis of Tracking Database will form the basis of project reports to Advisory Council and VAHHS |
|
Goal 7: Evaluation and oversight of the project will be accomplished with the guidance of Advisory Council |
|
Objective 7.1 Advisory Council will be established and functional by summer 2001 |
|
Activity 7.1.1 The current advisory councils for HOP and the CSHN Hearing and Communications programs will review their current missions and composition to develop a format to provide support and evaluation functions for the project. |
|
Activity 7.1.2 Aggregate Tracking Data will be reviewed by advisory council and will inform recommendations at each meeting |
|
[ The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview ] |
|
[Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%)] |
|
[Activity 4.3.1 PCPs will continue to be members of the advisory council(s)] |
9. Required Resources
To carry out the project goals, objectives, and activities, the project requires a project coordinator, with a background both in clinical direct service to children with special health care needs and their families, and experience in managing a multidimensional public health project. The coordinator will manage all aspects of the project, and will take the lead in case management activities not requiring the specific expertise of the audiologist. The coordinator will also facilitate the focus groups and structured interviews. The project audiologist must be a respected provider of pediatric audiology services, capable both of direct service (and supervision of direct service delegated to others as needed), and of establishing a role of audiologic leadership, for the project, for CSHN and Part C, and among practicing community audiologists. The role includes the assessment of continuing education needs, the development of curriculum, and, together with coordinator, implementation of continuing education activities. The project secretary must be able to function independently, with guidance, in a wide range of support activities, from family contacts, to clinic scheduling, to meeting organization, to data entry. Funds are also needed to support contractual relationships with University of Vermont, Dartmouth, and nationally-recognized audiology and early intervention educators. In the first and second years, funds are needed to assist hospitals with the purchase of equipment.
10. Methodology
The project activities to accomplish the project goals are described under 8. Goals and Objectives. The following Allocation plans detail the methodology (see next pages):
Note for PERSONNEL ALLOCATION CHART, ATTACHMENT E: Project Coordinator, Project Audiologist, and Project Secretary have 236 days per year, each, as full-time positions. Family Support Services and UVM Audiology are grantees. Project Director is contributing about 20 days.
The boxes with the dots represent core ongoing, daily activities that are difficult to quantify except that they will fill most of the staff member's work day. For the Coordinator and the Audiologist, these activities are those associated with clinical testing (audiologist) and case management (coordinator, and some audiology time). For the Secretary, this time represents data entry to the Tracking Database, and clerical support of the follow-up and case management component.ATTACHMENT E
PERSONNEL ALLOCATION CHART
Project Title: Vermont's Children's Hearing Identification and Resources Project: Closing the Loop
Project Director: Carol R. Hassler, MD
Budget Period: 3/31/01 to 3/30/02 Project Year: 1
State: Vermont
|
OBJECTIVES, GOALS |
STAFF BY TITLE |
CONSULTANTS |
|||||
|
Number of Workdays |
|||||||
|
Project Director |
Project Coord |
Secretary |
MCH Statistician |
Audiologist |
Family Support Services |
UVM audiology |
|
|
Goal 1: All Vermont birth hospitals will screen the hearing of all newborns before discharge, and all home-birthed infants will be screened by one month of age |
|||||||
|
Objective 1.1: Four VT birth hospitals will begin UNHS by the end of year1, and the rest by end of year 2 |
|||||||
|
Activity 1.1.1 Project director will continue to make presentations semiannually to VAHHS hospital CEO's |
2 |
1 |
|||||
|
Activity 1.1.2 Project staff will make presentations to key non-UNHS hospital decision-makers to encourage their planning and implementation of UNHS |
6 |
12 |
12 |
||||
|
Activity 1.1.3 Small grants to hospitals will assist in the purchase of equipment |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 1.1.4 Project staff and parent contractors will provide technical assistance to hospitals developing UNHS protocols (equipment selection, informed consent, 2-step screening protocols, screening for risk/monitoring; communication with parents and PCPs about results) |
24 |
12 |
12 |
6 |
|||
|
Objective 1.2 Technical assistance will sustain and improve the capacity of UNHS hospitals to screen |
|||||||
|
Activity 1.2.1 Project staff will establish a nursery UNHS managers' group and develop annual inservices |
24 |
24 |
6 |
6 |
|||
|
Activity 1.2.2 Project staff will use the EHDI/CDC Tracking Database to analyze hospital UNHS performance (timeliness, false positives, misses, "refers" ) on a hospital, by hospital basis, provide data feedback to hospitals, and suggest improved practices |
12 |
3 |
3 |
12 |
|||
|
Activity 1.2.3 The project will facilitate a meeting of hospital representatives and VT third party funding sources, including Medicaid, to discuss the potential coverage options for the costs to the hospitals |
1 |
3 |
2 |
||||
|
Activity 1.2.4 All births will be entered into Tracking Database (dob; demographics; PCP) |
* |
||||||
|
Activity 1.2.5 Results of all hospital screens (methods, results, age at testing, known risks, plan for follow-up if "refer") will be reported to project and entered into EHDI/CDC Tracking Database |
* |
||||||
|
Objective 1.3 The percentage of known home birthed infants receiving hearing screening will increase |
|||||||
|
Activity 1.3.1 (1) Metabolic samples and/or (2) birth certificates of known home-birthed infants will be matched to infants OAE-tested by HOP; infant entered into Tracking Database. |
* |
* |
* |
||||
|
Activity 1.3.2 Project staff will contact PCP if there is no record of HOP hearing testing for a known home-birthed infant, to schedule infant for HOP outpatient OAE testing within one month of identification of birth |
* |
* |
* |
||||
|
Activity 1.3.3 A lay midwife will be included as an advisory council member. |
|||||||
|
Activity 1.3.4 The project staff will expand the content of contacts with lay midwives around metabolic screening, to include hearing screening |
|||||||
|
Activity 1.3.5 Project staff will present to parent organizations associated with home births (e.g., La Leche League) |
|||||||
|
Activity 1.3.6 Results of all home-birth HOP tests will be entered into Tracking Database; % screened |
* |
* |
|
OBJECTIVES, GOALS |
STAFF BY TITLE |
CONSULTANTS |
|||||
|
Number of Workdays |
|||||||
|
Project Director |
Project Coord |
Secretary |
MCH Statistician |
Audiologist |
Family Support Services |
UVM audiology |
|
|
Goal 2: All VT newborns needing diagnosis of hearing loss will have diagnosis completed by 3 months |
|||||||
|
Objective 2.1 HOP will expand its current capacity, in order to provide clinical audiological follow-up OAE testing and aggressive, public health, goal-based case management |
|||||||
|
Activity 2.1.1 HOP clinical and case management staff time will expand through grant support |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 2.1.2 The project will build upon current HOP third party billing efforts to capture available payments for visits, to maintain HOP services at no direct cost to families. |
1 |
4 |
4 |
||||
|
Activity 2.1.3 Frequency of itinerant clinics at each site will be increased to meet the necessary timeliness goal |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 2.1.4 Infants referred to HOP (missed screening or "refer") will be seen by HOP pediatric audiologist for OAE testing and tympanometry, and screened for the risk of later-onset hearing loss, within one month |
* |
* |
* |
||||
|
Activity 2.1.5 HOP testing outcomes will be discussed with the family, and with permission, reported to the PCP, and the hospital and/or lay midwife, and entered into the Tracking Database. |
* |
* |
|||||
|
Objective 2.2 Hospitals will be assisted in developing their follow-up protocols for "refer" or missed infants |
|||||||
|
Activity 2.2.1 Among hospitals and PCPs, the project will promote referral to HOP as the easiest, most thorough, most proactive and consistent resource to assure comprehensive post-nursery follow-up. |
12 |
||||||
|
Activity 2.2.2 Project staff will help hospitals to develop failsafe protocols and agreements for clinical follow-up in their UNHS procedures. Options: Hospitals refer infants needing follow-up to clinical HOP clinical follow-up program, and notify PCP; or, hospitals defer to PCP for follow-up and merely notify HOP (and enter into the Tracking Database) |
3 |
12 |
6 |
||||
|
Objective 2.3 Infants needing diagnosis will have project case management support to complete testing by 3 mos. |
|||||||
|
Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results) |
* |
* |
|||||
|
Activity 2.3.2 HOP proactively pursues the results of the diagnostic testing, to assure that the testing is accomplished and communicated by three months. |
* |
* |
* |
||||
|
Activity 2.3.3 When an infant has been referred to a diagnostic center (either directly by HOP or by the PCP, with HOP case management), HOP facilitates family access through CSHN financial assistance, within Cost Share guidelines. |
* |
* |
* |
||||
|
Objective 2.4 Diagnostic services for very young infants will have increased capacity for infant evaluations |
|||||||
|
Activity 2.4.1 The Advisory councils will review and adapt the new (expected January, 2001) Colorado standards for appropriate methods of hearing diagnosis in infants |
1 |
1 |
1 |
||||
|
Activity 2.4.2 Diagnostic programs/centers which meet the standards will be invited to participate (through provider agreements) in the hearing screening follow-up network and will be able to receive CSHN after-insurance coverage of their services to infants needing hearing diagnosis. |
2 |
2 |
1 |
2 |
|||
|
Activity 2.4.3 Clinical standards agreements will be achieved with diagnostic centers re: awareness of target age of 3 months; timeliness of seeing infants referred by program; reporting missed appointments so program can follow-up; reporting results and recommendations back to program and PCP |
1 |
4 |
1 |
4 |
2 |
||
|
Activity 2.4.4 The project will identify potential new diagnostic sites, and help them to identify their need for resources to meet the practice standards |
2 |
2 |
2 |
||||
|
Objective 2.5 The project will decrease the lost-to-follow-up rate, at each milestone (1 month screen; 3 month diagnosis; 6 month intervention) compared with nationally-reported EHDI data, using Tracking Database |
|||||||
|
Activity 2.5.1 Missed appointments will be pursued and case managed by project coordinator (may include outreach to parents and PCPs, assistance with accessing Medicaid transportation, special arrangements for home HOP visits when necessary; public health nursing referrals; financial assistance) |
* |
* |
* |
|
OBJECTIVES, GOALS |
STAFF BY TITLE |
CONSULTANTS |
|||||
|
Number of Workdays |
|||||||
|
Project Director |
Project Coord |
Secre tary |
MCH Statistician |
Audiologist |
Family Support Services |
UVM audiology |
|
|
Goal 3: All Vermont infants diagnosed with hearing loss will be receiving appropriate early intervention by six months of age |
|||||||
|
Objective 3.1 The age at which infants needing intervention, begin intervention, will be tracked and will progressively improve, through project case management |
|||||||
|
Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support. |
* |
* |
|||||
|
Activity 3.1.2 Project case management will faciliate connections with needed intervention services |
* |
* |
|||||
|
Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission). |
* |
* |
|||||
|
Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. |
* |
* |
|||||
|
Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. |
* |
* |
|||||
|
Activity 3.1.6 Tracking Database will have entries for age at diagnosis; age at FITP/VPIP enrollment; age at IFSP; status at 6, 12, and 24 months post-diagnosis. |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 3.1.7 Project case management offer CSHN financial assistance with costs, to eliminate barriers to timely access of early intervention |
* |
* |
|||||
|
Objective 3.2 VT audiology and EI providers will participate in continuing education around best practices for services for infants with hearing loss |
|||||||
|
Activity 3.2.1 Project will establish audiology/VPIP/FITP/parent focus group to gather information and guidance about the content of continuing education for EI providers |
4 |
1 |
4 |
4 |
|||
|
Activity 3.2.2 Project will integrate continuing education efforts with Part C training activities |
1 |
1 |
1 |
1 |
1 |
||
|
Activity 3.2.3 Modeled on CSHN nutrition network, project will offer inservices to community based audiologists to enhance their skills in the audiologic and amplification care of infants, to enable them to receive referrals from the project. |
12 |
3 |
12 |
12 |
12 |
||
|
Activity 3.2.4 Project will collaborate with nationally-funded UNHD.EHDI technical assistance centers, to organize and present a major, interdisciplinary early hearing intervention conference in year two and year four |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
OBJECTIVES, GOALS |
STAFF BY TITLE |
CONSULTANTS |
|
||||
|
Number of Workdays |
|
||||||
|
Project Director |
Project Coord |
Secre tary |
MCH Statistician |
Audiologist |
Family Support Services |
UVM audiology |
|
|
Goal 4: Primary Care Providers will be supported in their role as Medical Home for infants with hearing loss |
|
|
|
|
|
|
|
|
Objective 4.1 Every UNHS infant will have a PCP identified in the Tracking Database |
|
|
|
|
|
|
|
|
Activity 4.1.1 UNHS hospitals will note name of PCP with their screening reports |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 4.1.2 When infants are referred to HOP for clinical audiologic follow-up and case management, parents will be interviewed about their PCP and information entered into Tracking Database |
|
* |
* |
|
* |
|
|
|
Activity 4.1.3 Project staff will request and update permission from parents to communicate with their infant's PCP with all necessary testing reports and recommendations |
|
* |
* |
|
* |
|
|
|
Objective 4.2 The identified PCP will be involved in each step of the UNHS/EHDI; Project clinical case management will communicate and plan diagnostic course with infant's PCP and family |
|
|
|
|
|
|
|
|
Activity 4.2.1 UNHS hospitals will report screening results to PCP,and to project for Tracking Database |
|
|
|
|
|
|
|
|
[Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results)] |
|
|
|
|
|
|
|
|
[Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support.] |
|
|
|
|
|
|
|
|
[Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission).] |
|
|
|
|
|
|
|
|
[Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. ] |
|
|
|
|
|
|
|
|
[Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. ] |
|
|
|
|
|
|
|
|
Objective 4.3 Medical home/PCP will participate in project oversight through advisory council |
|
|
|
|
|
|
|
|
Activity 4.3.1 PCPs will continue to be members of the advisory council(s) |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Objective 4.4 Professional education efforts will increase awareness of PCPs about the goals of UNHS and early intervention, and provide tools for patient education |
|
|
|
|
|
|
|
|
Activity 4.4.1 Project staff, in collaboration with PCP input from advisory council, will develop educational messages (e.g. grand rounds; mailings) to the PCP community about the needs for hearing screening; risk factors; hearing developmental milestones, best practices for follow-up and intervention |
|
4 |
2 |
|
2 |
4 |
4 |
|
Activity 4.4.2 Project staff, in collaboration with PCP and parents, will adapt national parent education material about UNHS, to be made available by PCPs to their families |
|
2 |
1 |
|
1 |
2 |
2 |
|
OBJECTIVES, GOALS |
STAFF BY TITLE |
CONSULTANTS |
|
||||
|
Number of Workdays |
|
||||||
|
Project Director |
Project Coord |
Secretary |
MCH Statistician |
Audiologist |
Family Support Services |
UVM audiology |
|
|
Goal 5: Parents will be partners in all aspects of the project |
|
|
|
|
|
|
|
|
Objective 5.1 Parents will receive family to family support at the time of their infant's hearing loss is diagnosed |
|
|
|
|
|
|
|
|
Activity 5.1.1 Parents will lead advisory council in revisiting the discussion (first discussed at Study Commission) about the timing of referral for direct parent-to-parent support (i.e., pre- or post-diagnosis) |
|
|
|
|
|
1 |
|
|
Activity 5.1.2 Project will offer referral to Family Support Services and Parent to Parent, at time of diagnosis |
|
* |
* |
|
* |
* |
|
|
Activity 5.1.3 Parents will co-present with staff at project inservices, to emphasize value of support and family-centered care practices |
|
6 |
2 |
|
2 |
6 |
6 |
|
Activity 5.1.4 A small grant will enhance Family Support Services' capacity to provide support |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 5.1.5 Tracking Database will record age at referral to family to family support |
|
|
|
|
|
|
|
|
Objective 5.2 Parents will participate in project oversight, design and evaluation |
|
|
|
|
|
|
|
|
Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%) |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 5.2.2 Parent stipends will be funded to enable parents to participate in project advisory functions |
|
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Activity 5.2.3 The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview |
2 |
6 |
6 |
|
6 |
6 |
6 |
|
Goal 6: The Tracking Database will serve as both a patient management information system and a source of information about the quality of the system of UNHS/EHDI |
|||||||
|
Objective 6.1 EHDI/CDC project staff will select key data elements necessary to meet the JCIH indicators (see text of narrative) and additional medical home and family support indicators |
|||||||
|
Activities are those of the EHDI/CDC project |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
N/A |
|
Objective 6.2: Project staff will enter key information about the course of each newborn, from birth, through screening, follow-up, diagnosis, intervention (as detailed in above sections) |
|||||||
|
Objective 6.3 Analysis of Tracking Database will form the basis of project reports to Advisory Council and VAHHS |
|
Goal 7: Evaluation and oversight of the project will be accomplished with the guidance of Advisory Council |
|||||||
|
Objective 7.1 Advisory Council will be established and functional by summer 2001 |
|||||||
|
Activity 7.1.1 The current advisory councils for HOP and the CSHN Hearing and Communications programs will review their current missions and composition to develop a format to provide support and evaluation functions for the project. |
1 |
1 |
1 |
1 |
1 |
||
|
Activity 7.1.2 Aggregate Tracking Data will be reviewed by advisory council and will inform recommendations at each meeting |
1 |
1 |
1 |
1 |
1 |
1 |
|
|
[ The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview ] |
|||||||
|
[Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%)] |
|||||||
|
[Activity 4.3.1 PCPs will continue to be members of the advisory council(s)] |
Note: Project Coordinator, Project Audiologist, and Project Secretary have 236 days per year, each, as full-time positions. Family Support Services and UVM Audiology are grantees. Project Director is contributing about 20 days.
The boxes with the dots represent core ongoing, daily activities that are difficult to quantify except that they will fill most of the staff member's work day. For the Coordinator and the Audiologist, these activities are those associated with clinical testing (audiologist) and case management (coordinator, and some audiology time). For the Secretary, this time represents data entry to the Tracking Database, and clerical support of the follow-up and case management component.
ATTACHMENT F
PROJECT ACTIVITIES TIME ALLOCATION TABLE
Project Title: Vermont's Children's Hearing Identification and Resources Project: Closing the Loop
Project Director: Carol R. Hassler, MD
Budget Period: 3/31/01 to 3/30/02
|
Objectives, Goals |
Start Date |
Completion Date |
Tracking/Evaluation Methods |
|
Goal 1: All Vermont birth hospitals will screen the hearing of all newborns before discharge, and all home-birthed infants will be screened by one month of age |
|
|
|
|
Objective 1.1: Four VT birth hospitals will begin UNHS by the end of year1, and the rest by end of year 2 |
4-01 |
4-03 |
# and dates of hospitals initiating UNHS |
|
Activity 1.1.1 Project director will continue to make presentations semiannually to VAHHS hospital CEO's |
4-01 |
4-05 |
Dates of meetings; minutes |
|
Activity 1.1.2 Project staff will make presentations to key non-UNHS hospital decision-makers to encourage their planning and implementation of UNHS |
4-01 |
4-03 |
Dates of meetings; minutes |
|
Activity 1.1.3 Small grants to hospitals will assist in the purchase of equipment |
4-01 |
4-03 |
Grants made; name of hospital, amount, purpose |
|
Activity 1.1.4 Project staff and parent contractors will provide technical assistance to hospitals developing UNHS protocols (equipment selection, informed consent, 2-step screening protocols, screening for risk/monitoring; communication with parents and PCPs about results) |
4-01 |
4-03 |
Documentation of requests and TA services, content |
|
Objective 1.2 Technical assistance will sustain and improve the capacity of UNHS hospitals to screen |
8-01 |
4-05 |
Activities documented |
|
Activity 1.2.1 Project staff will establish a nursery UNHS managers' group and develop annual inservices |
8-01 |
4-05 |
Membership; dates of meetings; syllabi of inservices |
|
Activity 1.2.2 Project staff will use the EHDI/CDC Tracking Database to analyze hospital UNHS performance (timeliness, false positives, misses, "refers" ) on a hospital, by hospital basis, provide data feedback to hospitals, and suggest improved practices |
8-01 |
4-05 |
Tracking Database; communications/feedback with hospitals; recommended actions; results |
|
Activity 1.2.3 The project will facilitate a meeting of hospital representatives and VT third party funding sources, including Medicaid, to discuss the potential coverage options for the costs to the hospitals |
|
8-01 |
Meeting accomplished; attendance; results |
|
Activity 1.2.4 All births will be entered into Tracking Database (dob; demographics; PCP) |
12-01 |
4-05 |
Tracking Database |
|
Activity 1.2.5 Results of all hospital screens (methods, results, age at testing, known risks, plan for follow-up if "refer") will be reported to project and entered into EHDI/CDC Tracking Database |
12-01 |
4-05 |
Tracking Database |
|
Objective 1.3 The percentage of known home birthed infants receiving hearing screening will increase |
12-01 |
4-05 |
Tracking Database |
|
Activity 1.3.1 (1) Metabolic samples and/or (2) birth certificates of known home-birthed infants will be matched to infants OAE-tested by HOP; infant entered into Tracking Database. |
12-0-1 |
4-05 |
Metabolic lab reports; EBCs; Tracking Database |
|
Activity 1.3.2 Project staff will contact PCP if there is no record of HOP hearing testing for a known home-birthed infant, to schedule infant for HOP outpatient OAE testing within one month of identification of birth |
12-01 |
4-05 |
" |
|
Activity 1.3.3 A lay midwife will be included as an advisory council member. |
8-01 |
4-05 |
Membership; minutes |
|
Activity 1.3.4 The project staff will expand the content of contacts with lay midwives around metabolic screening, to include hearing screening |
8-01 |
4-05 |
Documentation of contacts and contents |
|
Activity 1.3.5 Project staff will present to parent organizations associated with home births (e.g., La Leche League) |
12-01 |
12-02 |
Dates and syllabi of presentation; attendance |
|
Activity 1.3.6 Results of all home-birth HOP tests will be entered into Tracking Database; % screened |
8-01 |
4-05 |
Tracking Database |
|
Goal 2: All VT newborns needing diagnosis of hearing loss will have diagnosis completed by 3 months |
Start Date |
Compl. Date |
Tracking/Evaluation Methods |
|
Objective 2.1 HOP will expand its current capacity, in order to provide clinical audiological follow-up OAE testing and aggressive, public health, goal-based case management |
4-01 |
4-05 |
Annual # HOP visits; # newborn visits and category (missed; refer; home birth) |
|
Activity 2.1.1 HOP clinical and case management staff time will expand through grant support |
4-01 |
4-05 |
Staff hired |
|
Activity 2.1.2 The project will build upon current HOP third party billing efforts to capture available payments for visits, to maintain HOP services at no direct cost to families. |
4-01 |
4-05 |
Quarterly reimbursement statements from billing company |
|
Activity 2.1.3 Frequency of itinerant clinics at each site will be increased to meet the necessary timeliness goal |
4-01 |
4-05 |
Clinic schedules |
|
Activity 2.1.4 Infants referred to HOP (missed screening or "refer") will be seen by HOP pediatric audiologist for OAE testing and tympanometry, and screened for the risk of later-onset hearing loss, within one month |
4-01 |
4-05 |
Tracking Database |
|
Activity 2.1.5 HOP testing outcomes will be discussed with the family, and with permission, reported to the PCP, and the hospital and/or lay midwife, and entered into the Tracking Database. |
4-01 |
4-05 |
" |
|
Objective 2.2 Hospitals will be assisted in developing their follow-up protocols for "refer" or missed infants |
4-01 |
4-05 |
Tracking Database; chart reviews |
|
Activity 2.2.1 Among hospitals and PCPs, the project will promote referral to HOP as the easiest, most thorough, most proactive and consistent resource to assure comprehensive post-nursery follow-up. |
4-01 |
4-05 |
Log of promotion activities |
|
Activity 2.2.2 Project staff will help hospitals to develop failsafe protocols and agreements for clinical follow-up in their UNHS procedures. Options: Hospitals refer infants needing follow-up to clinical HOP clinical follow-up program, and notify PCP; or, hospitals defer to PCP for follow-up and merely notify HOP (and enter into the Tracking Database) |
4-01 |
4-05 |
Copies of hospital protocols; logs of TA efforts |
|
Objective 2.3 Infants needing diagnosis will have project case management support to complete testing by 3 mos. |
4-01 |
4-05 |
Tracking Database |
|
Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results) |
4-01 |
4-05 |
Chart review |
|
Activity 2.3.2 HOP proactively pursues the results of the diagnostic testing, to assure that the testing is accomplished and communicated by three months. |
4-01 |
4-05 |
Chart review; Tracking Database |
|
Activity 2.3.3 When an infant has been referred to a diagnostic center (either directly by HOP or by the PCP, with HOP case management), HOP facilitates family access through CSHN financial assistance, within Cost Share guidelines. |
4-01 |
4-05 |
Financial assistance record review; budget reports |
|
Objective 2.4 Diagnostic services for very young infants will have increased capacity for infant evaluations |
4-01 |
4-05 |
Tracking Database; Survey of diagnostic centers |
|
Activity 2.4.1 The Advisory councils will review and adapt the new (expected January, 2001) Colorado standards for appropriate methods of hearing diagnosis in infants |
8-01 |
12-01 |
Council minutes |
|
Activity 2.4.2 Diagnostic programs/centers which meet the standards will be invited to participate (through provider agreements) in the hearing screening follow-up network and will be able to receive CSHN after-insurance coverage of their services to infants needing hearing diagnosis. |
12-01 |
4-05 |
Documentation of contacts |
|
Activity 2.4.3 Clinical standards agreements will be achieved with diagnostic centers re: awareness of target age of 3 months; timeliness of seeing infants referred by program; reporting missed appointments so program can follow-up; reporting results and recommendations back to program and PCP |
4-02 |
4-05 |
# agreements achieved |
|
Activity 2.4.4 The project will identify potential new diagnostic sites, and help them to identify their need for resources to meet the practice standards |
4-02 |
4-05 |
Documentation of contacts |
|
Objective 2.5 The project will decrease the lost-to-follow-up rate, at each milestone (1 month screen; 3 month diagnosis; 6 month intervention) compared with nationally-reported EHDI data, using Tracking Database |
4-02 |
4-05 |
Tracking Database |
|
Activity 2.5.1 Missed appointments will be pursued and case managed by project coordinator (may include outreach to parents and PCPs, assistance with accessing Medicaid transportation, special arrangements for home HOP visits when necessary; public health nursing referrals; financial assistance) |
4-01 |
4-05 |
Tracking Database; chart review |
|
Goal 3: All Vermont infants diagnosed with hearing loss will be receiving appropriate early intervention by six months of age |
Start Date |
Completion Date |
Tracking/Evaluation Methods |
|
Objective 3.1 The age at which infants needing intervention, begin intervention, will be tracked and will progressively improve, through project case management |
8-01 |
4-05 |
Tracking Database |
|
Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support. |
4-01 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.2 Project case management will faciliate connections with needed intervention services |
4-01 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission). |
8-01 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. |
12-01 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. |
8-02 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.6 Tracking Database will have entries for age at diagnosis; age at FITP/VPIP enrollment; age at IFSP; status at 6, 12, and 24 months post-diagnosis. |
8-01 |
4-05 |
Tracking Database; chart review |
|
Activity 3.1.7 Project case management offer CSHN financial assistance with costs, to eliminate barriers to timely access of early intervention |
4-01 |
4-05 |
Chart review; budget review |
|
Objective 3.2 VT audiology and EI providers will participate in continuing education around best practices for services for infants with hearing loss |
4-02 |
4-05 |
# events; #participating; #evaluation forms |
|
Activity 3.2.1 Project will establish audiology/VPIP/FITP/parent focus group to gather information and guidance about the content of continuing education for EI providers |
8-01 |
4-05 |
# events; #participating; #evaluation forms |
|
Activity 3.2.2 Project will integrate continuing education efforts with Part C training activities |
12-01 |
4-05 |
# events; #participating; #evaluation forms |
|
Activity 3.2.3 Modeled on CSHN nutrition network, project will offer inservices to community based audiologists to enhance their skills in the audiologic and amplification care of infants, to enable them to receive referrals from the project. |
4-02 |
4-05 |
# events; #participating; #evaluation forms |
|
Activity 3.2.4 Project will collaborate with nationally-funded UNHD.EHDI technical assistance centers, to organize and present a major, interdisciplinary early hearing intervention conference in year two and year four |
8-02 |
4-05 |
# events; #participating; #evaluation forms |
|
Goal 4: Primary Care Providers will be supported in their role as Medical Home for infants with hearing loss |
Start Date |
Completion Date |
Tracking/Evaluation Methods |
|
Objective 4.1 Every UNHS infant will have a PCP identified in the Tracking Database |
8-01 |
4-05 |
Tracking Database |
|
Activity 4.1.1 UNHS hospitals will note name of PCP with their screening reports |
8-01 |
4-05 |
Tracking Database |
|
Activity 4.1.2 When infants are referred to HOP for clinical audiologic follow-up and case management, parents will be interviewed about their PCP and information entered into Tracking Database |
8-01 |
4-05 |
Tracking Database |
|
Activity 4.1.3 Project staff will request and update permission from parents to communicate with their infant's PCP with all necessary testing reports and recommendations |
4-01 |
4-05 |
Chart review |
|
Objective 4.2 The identified PCP will be involved in each step of the UNHS/EHDI; Project clinical case management will communicate and plan diagnostic course with infant's PCP and family |
4-01 |
4-05 |
Chart review |
|
Activity 4.2.1 UNHS hospitals will report screening results to PCP,and to project for Tracking Database |
8-01 |
4-05 |
Tracking Database |
|
[Activity 2.3.1 When HOP provides clinical follow-up testing, HOP staff will discuss findings with PCP, (1) offer to make a direct referral to an appropriate diagnostic center, or, (2) if the PCP wishes to direct the plan and care himself, provide the PCP with information about best practices, recommended diagnostic procedures and centers, and aggressively facilitate/case manage the clinical plan of the PCP (clearly, the latter is more "labor-intensive", requiring outreach and tracking down of results)] |
q.v. |
q.v. |
q.v. |
|
[Activity 3.1.1 When diagnosis is reported to project, staff will discuss findings with PCP, and urgent need for EI and how to access resources, including: Audiology/amplification; ENT for medical diagnosis and consideration of treatment (e.g., cochlear implant); FITP/VPIP (Part C) enrollment, communication services, and parent support.] |
q.v. |
q.v. |
q.v. |
|
[Activity 3.1.3 Within one month of diagnosis of hearing loss, staff will facilitate convening of parents and team to draft or confirm plan, and assure that FITP/VPIP enrollment is complete (with parent permission).] |
q.v. |
q.v. |
q.v. |
|
[Activity 3.1.4 Within 6 months of diagnosis, staff will make follow-up contacts with (1) family, (2) PCP and (3) FITP/VPIP (Part C) service coordinator to confirm plan is on track. If so, data loop is closed. ] |
q.v. |
q.v. |
q.v. |
|
[Activity 3.1.5 Staff will re-contact family, PCP and FITP/VPIP at 12 and 24 months post-diagnosis to assess status, using structured interview questions developed by advisory council. ] |
q.v. |
q.v. |
q.v. |
|
Objective 4.3 Medical home/PCP will participate in project oversight through advisory council |
8-01 |
4-05 |
Membership; minutes |
|
Activity 4.3.1 PCPs will continue to be members of the advisory council(s) |
8-01 |
4-05 |
Membership; minutes |
|
Objective 4.4 Professional education efforts will increase awareness of PCPs about the goals of UNHS and early intervention, and provide tools for patient education |
12-01 |
4-05 |
Documentation of efforts |
|
Activity 4.4.1 Project staff, in collaboration with PCP input from advisory council, will develop educational messages (e.g. grand rounds; mailings) to the PCP community about the needs for hearing screening; risk factors; hearing developmental milestones, best practices for follow-up and intervention |
12-01 |
4-05 |
Documentation of efforts |
|
Activity 4.4.2 Project staff, in collaboration with PCP and parents, will adapt national parent education material about UNHS, to be made available by PCPs to their families |
12-01 |
4-05 |
Documentation of efforts; materials |
|
Goal 5: Parents will be partners in all aspects of the project |
Start Date |
Completion Date |
Tracking/Evaluation methods |
|
Objective 5.1 Parents will receive family to family support at the time of their infant's hearing loss is diagnosed |
8-01 |
4-05 |
Tracking Data: # enrolled and age; # with family support in IFSP |
|
Activity 5.1.1 Parents will lead advisory council in revisiting the discussion (first discussed at Study Commission) about the timing of referral for direct parent-to-parent support (i.e., pre- or post-diagnosis) |
8-01 |
4-05 |
Meeting minutes and result |
|
Activity 5.1.2 Project will offer referral to Family Support Services and Parent to Parent, at time of diagnosis |
4-01 |
4-05 |
Tracking Data |
|
Activity 5.1.3 Parents will co-present with staff at project inservices, to emphasize value of support and family-centered care practices |
12-01 |
4-05 |
Dates of meetings; agendas |
|
Activity 5.1.4 A small grant will enhance Family Support Services' capacity to provide support |
4-01 |
4-05 |
Grant |
|
Activity 5.1.5 Tracking Database will record age at referral to family to family support |
8-01 |
4-05 |
Tracking database |
|
Objective 5.2 Parents will participate in project oversight, design and evaluation |
4-01 |
4-05 |
Documentation |
|
Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%) |
8-01 |
4-05 |
Membership |
|
Activity 5.2.2 Parent stipends will be funded to enable parents to participate in project advisory functions |
8-01 |
4-05 |
# and amount of stipends |
|
Activity 5.2.3 The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview |
8-01 |
4-05 |
# groups; # interviews; transcipts |
|
Goal 6: The Tracking Database will serve as both a patient management information system and a source of information about the quality of the system of UNHS/EHDI |
Start Date |
Completion Date |
Tracking/evaluation method |
|
Objective 6.1 EHDI/CDC project staff will select key data elements necessary to meet the JCIH indicators (see text of narrative) and additional medical home and family support indicators |
6-01 |
12-01 |
Data selected; document |
|
Activities are those of the EHDI/CDC project |
q.v. |
q.v. |
q.v. |
|
Objective 6.2: Project staff will enter key information about the course of each newborn, from birth, through screening, follow-up, diagnosis, intervention (as detailed in above sections) |
8-01 |
4-05 |
Tracking Database; length of backlog |
|
Objective 6.3 Analysis of Tracking Database will form the basis of project reports to Advisory Council and VAHHS |
8-01 |
4-05 |
Meeting date |
|
Goal 7: Evaluation and oversight of the project will be accomplished with the guidance of Advisory Council |
Start Date |
Completion Date |
Tracking/Evaluation methods |
|
Objective 7.1 Advisory Council will be established and functional by summer 2001 |
8-01 |
4-05 |
Meeting minutes |
|
Activity 7.1.1 The current advisory councils for HOP and the CSHN Hearing and Communications programs will review their current missions and composition to develop a format to provide support and evaluation functions for the project. |
8-01 |
4-05 |
Meeting minutes |
|
Activity 7.1.2 Aggregate Tracking Data will be reviewed by advisory council and will inform recommendations at each meeting |
8-01 |
4-05 |
Meeting minutes |
|
[ Activity 5.2.3 The project will facilitate focus groups and interviews with parents of infants and toddlers with hearing loss to gather information about the strengths and weaknesses of the current system serving their children; Parents on advisory council will participate in design of interview ] |
q.v. |
q.v. |
Focus groups held |
|
[Activity 5.2.1 Parents will be substantially represented on advisory councils (at least 25%)] |
q.v. |
q.v. |
Membership |
|
2[Activity 4.3.1 PCPs will continue to be members of the advisory council(s)] |
q.v. |
q.v. |
Membership |
Evaluation Plan
The evaluation plan is included in the Allocation plans as well. The project staff will meet at least monthly to review progress towards activities. The staff will report regularly to the advisory council(s), as well as to related groups, such as the Part C Interagency Coordination Council and the Vermont Association of Hospitals and Health Systems. Because the project will be located within CSHN, its work will be integrated into the state's Title V needs assessment, annual report, and annual plan.
Ultimately, however, the success of the project depends upon the clinical and case management efforts to achieve, for every Vermont newborn, the goal of screening and, when needed, timely follow-up and intervention. This documentation of this achievement depends upon the EHDI/CDC-supported data and tracking system's ability to answer the following questions, based significantly on the JCIH Benchmarks and Indicators: