Kentucky CDC EHDI Grant (2001)

GRANT ABSTRACT

Grant Program Title:  Cooperative Agreement for Early Hearing Detection and Intevention (EHDI) Tracking, Research and Integration

Project Title:  Sound Start Surveillance System
Organization Name: Kentucky Commission for Children with Special Health Care Needs,
982 Eastern Parkway, Louisville, KY  40217
Contact Person: Eric Friedlander, Executive Director, at (502) 595-4495 Fax: (502) 595-4673
Project Director: Michelle King, M.S., CCC-A at (502) 595-4459, ext. 323;
Email: Michelle.King@mailstate.ky.us
Funding:Level I
Project Period: 4 Years From 8/1/01 to 7/31/05

Organizational Structure: The Cabinet for Health Services designates the KY Commission for Children with Special Health Care Needs (CCSHCN) as the bona fide agent in Kentucky for Universal Newborn Hearing Screening (UNHS).  The Sound Start Surveillance Project will build upon the existing database to enhance data management of the statewide UNHS, which has resided in the Commission for Children since September 1986.

Purpose: The Sound Start Surveillance System Project will be a collaboration between the Commission for Children with selected pilot birthing hospitals throughout the state that have demonstrated the capability of sending encrypted electronic data information to a centralized site.  It will also allow viewing and entry of follow-up diagnostic audiology information by direct service providers. The primary targeted outcome of this EHDI Program is to track all infants in KY receiving UNHS and to reduce the age at which children with hearing impairments are identified (by three months) and begin early intervention services (by six months).

Problem: The current UNHS tracking system involves manual manipulation of hard copy forms by multiple hospital personnel (including nurses, clerks and medical records staff); and mail handlers before it reaches the Kentucky infants' sound start (Kiss) program for data entry.  This process was imitated due to the short time frames implementing the statewide UNHS mandate. The goal of this project is to streamline the process in order to eliminate duplicate work and to assist families in a timelier manner.

Goals and Objectives:  Goal 1:  To provide and expedient and convenient way for hospitals to submit Hearing Screening Report information to the Kiss Project Office; Goal 2:  To increase the number of Audiologists reporting diagnostic follow-up from hospital screening referrals and newly diagnosed Deaf or Hard of Hearing infants and toddlers; Goal 3:  To upgrade Kentucky's EHDI database to collaborate with other statewide surveillance systems and the national data systems including the Center for Disease Control and Prevention; the National Center for Hearing Assessment and Management; and Maternal and Child Health Bureau; and Goal 4: To increase the number of Early Interventionists reporting data on Deaf and Hard of Hearing Infants and toddlers to the centralized EHDI data tracking system for the state of KY.  Achieving these goals will result in:  a) increasing timely referrals into the diagnostic audiology tract; b) accelerate the provision of information to families allowing them time to make informed choices regarding their child's early intervention; c) enhancement of the centralized statewide EHDI tracking and surveillance system that meets national standards and d) reduce the age of Deaf and Hard of Hearing infants and toddlers enrollment into early intervention.

Methodology: Methods to be used:  1) develop assessment tool to critique internet capacity of birthing hospitals and audiologists; 2) contract with computer programmer to develop screens for web-based data entry, enhance current data collection and develop user's guides; 3) contract with Governor's Office of Technology to host secure site and install T-1lines; 4) select 8 – 10 birthing hospitals to pilot online program; 5) provide remote access diagnostic audiology services in identified underserved areas of the state; 6) develop training materials and users' guides; 7) provide educational opportunities for UNHS staff to improve data management skills to enhance database infrastructure to collaborate with birthing hospitals, state and National databases; and 8) evaluate by monitoring the declining age at which Deaf and Hard of Hearing infants and children enter early intervention.

Evaluation:  Evaluation includes:  1) systems changes in KY regarding birthing hospital collaboration with reporting EHDI data; 2) evaluation of web-based data entry program by pilot hospital personnel and diagnostic audiologists; 3) collect case studies of individuals and families affected by KY UNHS; and 4) description of benefits and costs of this project.  This project will also collect specific data sets including; the number of UNHS tests prior to hospital discharge; # passed; # of referred; # receiving disseminated information; # accessing remote diagnostic audiology services; # and age of those tracked into audiology diagnostics; and early intervention throughout the four years of this project.  Results will be collaborated statewide and shared with the Centers for Disease Control and Prevention, Maternal and Child Health Bureau and the National Center for Hearing Assessment and Management.

GRANT NARRATIVE

a. Understanding the Problem and Current Status

The Kentucky Commission for Children with Special Health Care Needs is a leader among state Title V CSHCN Programs with implementation of Early Hearing Detection and Intevention (EHDI) services. The Universal Newborn Hearing Screening (UNHS) program in Kentucky; “Kentucky Infants' Sound Start” (Kiss) was officially implemented January 1, 2001. The passage of Kentucky's Governor Paul Patton's Early Childhood Initiative, “Kentucky Invests in Developing Success Now” (KIDS Now) during the 2000 Legislative Session coincided with the implementation of the federally funded Kentucky infants' sound start (Kiss) Project. The KIDS Now legislation incorporates several early childhood development initiatives, including (UNHS).

Regulations promulgated to implement the KIDS Now UNHS initiatives require, as a condition of licensure, that all hospitals offering obstetric services and 40 or more annual births provide an auditory screening for infants. If that screening indicates a finding of potential hearing loss, a report must be forwarded by the hospital, within 24 hours, to the attending physician, parents, and the Commission for Children. The Commission for Children's, Kiss Project is required to contact the parents to schedule a follow-up examination or make a referral for evaluation within three business days. If the evaluation indicates evidence of a hearing loss, the Commission for Children must: 1) contact the attending physician and parents, and 2) make a referral to First Steps, the Kentucky Part C program of IDEA. This program will become part of the Commission for Children in October 2001.

The KIDS Now UNHS initiative contains provisions for statewide surveillance and reporting. To document the total number of children screened and referrals for children identified with potential hearing loss, hospitals must forward all screening reports to the Kiss Project. In the event that an evaluation by an audiologist at the Commission for Children indicates a hearing loss, a copy of the report, minus information that identifies the child, is forwarded to the Kentucky Commission on Deaf and Hard of Hearing (KCDHH) for census purposes, and to the Kentucky Birth Surveillance Registry (KBSR) for information purposes.

The primary goal of the Kiss Project is to ensure that every newborn in Kentucky will receive a hearing screening, then timely and appropriate follow-up.  This is done through the following:  a) assisting hospitals in implementing UNHS programs; b) tracking hearing screening, referral procedures, diagnoses, and intevention through data collection and management; c) referring infants to appropriate and convenient test sites for follow-up procedures; and d) collaborating with state and private agencies, medical professionals, parents, hospitals, early interventionists, and the KCDHH to provide information to newly diagnosed infants and their families.

Working towards attainment of goals, the Kiss Project has moved quickly to implement UNHS.  An equipment matching-fund grant was offered to Kentucky hospitals with the state's tobacco settlement monies.  The Kiss Project assisted 33 hospitals in purchasing testing equipment.  With this grant, all 62 birthing hospitals achieved the equipment necessary to screen infant hearing. To date, all hospitals with more than 40 births annually have implemented UNHS. Data estimates indicate that 96% of the approximately 53,000 Kentucky newborns in 2001 will receive a hearing screen prior to hospital discharge. 

 Hospital personnel chose equipment most suited to their facility and work environment. All hospitals have minimum compliance protocols including the following:

Infants must be at least eight hours old before their initial hearing screen

Maximum of three screening attempts per ear

Hearing screening equipment must be available to all nurseries seven days a week

Infection control procedures must be strictly enforced

Hearing screeners must receive annual training

At least 90% of infants must be screened

Referral rate must not exceed 10% in year one of the program.  If referral rates exceed 6%, Kiss Project will verify statistical integrity and assist to reduce high referral rate.

Screening done with pre-programmed manufacturer pass/refer criteria

Back-up procedures must be established in the event of equipment malfunction

Consent for hearing screening must be addressed

Parents and physicians must be informed of hearing screening results

 Equipment currently in use in Kentucky is as follows:

Regional Coordinators have been recruited, hired and assigned to the Central, Eastern, and Western regions of the state. Coordinators offer direct assistance to hospitals, make routine site visits to assist with the screening process, assure compliance with minimum requirements, and to manage referrals throughout Kentucky

Currently data is collected on every child born in Kentucky.  Through manual completion of a multi-copy, color-coded Hearing Screening Report form, hospitals report on each infant.  The form is designed to ensure notification of hearing screening results to all required parties: original copy is forwarded to the Kiss Project at the Commission for Children; a copy for the parents; the primary care provider, and one retained for hospital records.  In accordance with state law, forms about infants who did not pass their newborn hearing screening and/or infants with risk factors for progressive or late onset hearing loss must be forwarded to the Kiss Project within 24 hours.  Forms on infants with passing hearing screening results and void of other risk factors must be forwarded to the Kiss Project within 7 days of hospital discharge.  Forms are either faxed or mailed to the Kiss Project office.

Two different tracking levels of data exist. The first level is the result of the physiologic hearing screen.Either pass or refer is recorded on the form; if available, information about follow-up evaluation is also noted on the form.  The second level is a list of risk factors for progressive or late onset hearing loss recommended by the Joint Committee on Infant Hearing (JCIH). Hospital staff identifies applicable risk factors through parent interviews and chart reviews. Infants with risk factors are tracked and their parents receive information encouraging audiologic and physician monitoring of hearing status.

Once the Hearing Screen Report forms are forwarded to the Kiss Project, the approximately 53,000 forms are manually reviewed and sorted into one of the following categories: 1) passed hearing screen and risk factor screen, 2) referred from hearing screen 3) referred risk factor(s) (only); or 4) referred from hearing screen and risk factor(s). Passing results without risk factors are sorted by hospital codes and documented.

Information on forms processed by Kiss Project staff is currently hand keyed into a Microsoft 2000 Access relational database.  Detailed information including parents' social security numbers, address, and physician's name and address are entered for each child.  Over 5,000 certificates are entered annually.  Once complete information is obtained and entered, families are contacted.  Letters describing the risk factor or the need for a referral for additional hearing screening are mailed along with a list of providers for hearing evaluation and a developmental checklist for speech, language, and auditory development.

The Audiology Committee of the Kiss Project Advisory Board is determining standard data elements that will be required for inclusion on the Audiology referral information sheet. Minimally the audiologist or facility must be able to provide diagnostic evaluation for children age birth to two using an objective physiological technology, either Otoacoustic Emissions (OAE) or Auditory Brainstem Response (ABR) equipment.  Nine Commission for Children offices located statewide have received diagnostic OAE and ABR units with frequency specific testing capabilities to assure appropriate and timely referral resources for children; especially for those who are uninsured or underinsured.

Despite locating existing audiology resources and providing equipment and training to staff in statewide offices, some areas of the state are still lacking diagnostic resources within a two-hour radius.  To address this Access to Health 2010 indicator UNHS regional coordinators could travel to those underserved areas and provide diagnostic evaluations at no cost to the family with portable ABR and OAE equipment. This service will provide high quality diagnostic services to families unable to travel a great distance to obtain hearing health care for their child.

Audiologists on the referral list, providing follow-up with infants from UNHS, should notify the Kiss Project of the test results.  Kiss Project staff contacts families with children who have not reported a follow-up evaluation within the first three months of being discharged by phone or mailing. The primary care provider is also notified of the need for the follow-up evaluation.  Families still resistant to follow-up services are referred to the Health Access Nurturing Development Services (HANDS) program.  HANDS the voluntary home visiting program run by the Department of Public Health that works with families to assure appropriate follow-up for newborns and their families.EHDI training has been provided to HANDS program staff so they can intervene with resistant families.  In addition, the Kentucky Early Years Program (KEY) makes follow-up contacts with families and offers support services.

Children identified with a permanent hearing loss are immediately referred into Kentucky's early intervention program. This program provides assistance with hearing aids and early intervention services.  To assist with the referral and early intervention process, UNHS regional coordinators currently contact the First Steps primary service workers and families.  The merger of the Commission for Children and First Steps in October will help to eliminate service lags to children transitioning from First Steps to other community-based services, since services and resources will be offered from age of diagnosis to 21 years of age.

At this time the data management component of the Kiss Project functions as a separate entity from other data tracking operations in Kentucky.  As other programs' data operations improve and capable of data sharing, the Kiss Project is preparing to link to other programs and reduce duplication.  In Kentucky, the Furthering Our Children's United Success (FOCUS) database, is in its first year of a two-year development phase, to collect information from MCH and early intervention resources statewide and digitally link programs.  Through secure information sharing, programs can have access to the current service information about Kentucky families.  Kiss database fields have been adjusted to link more easily to FOCUS and other state databases. 

b. Goals and Objectives

The four goals of the Sound Start Surveillance System are to: 1) provide an expedient and convenient way for hospitals to submit Hearing Screen Report information to the Kiss Project Office; 2) increase the number of Audiologists reporting diagnostic follow-up from hospital screening referrals and newly diagnosed Deaf or Hard of Hearing infants and toddlers; 3) upgrade Kentucky's EHDI database to collaborate with other statewide surveillance systems and the national data systems including the Centers for Disease Control and Prevention (CDC); The National Center for Hearing Assessment (NCHAM)and Management; and Maternal and Child Health Bureau (MCHB) and 4) increase the number of early interventionists reporting Deaf or Hard of Hearing infants and toddlers receiving services to the Sound Start Surveillance System. (The goals and objectives chart are displayed on pages 7-10.) 

  c.  Description of Program and Methodology

The Sound Start Surveillance System has a base for its data tracking and management roots from an earlier risk factor screening program.  This program, in existence for over 14 years, helped to set the stage for consistency with hospitals reporting data, transferring information by mail and through consultations, obtain linkages to diagnostic services and early intervention.

The basis of the risk factor screening program was a paper form completed by nurses and medical records staff, then mailed to vital statistics along with birth certificates.  The Department of Vital Statistics separated forms and forwarded the Hearing High Risk Certificates to the Hearing High Risk Registry (HHRR) office at the Commission for Children.  To continue with best practice standards, the natural progression for the Commission for Children was to move towards UNHS.  Thus, the best aspects of the HHRR program were incorporated into the UNHS Program (Kiss) that was implemented statewide January 1, 2001. 

To maintain a consistent format for transfer of information, the HHRR Certificate was adapted to meet the needs of the UNHS programming.  The Hearing Screen Report forms were designed to report both the results of newborn physiologic hearing screen and risk factors for late onset or progressive hearing loss.  The progressive or late onset hearing loss risk factors tracked in Kentucky include: 1) Bilirubin levels equal to or greater than 18mg%; 2) Craniofacial anomalies; 3) Sepsis; 4) Seizures; 5) Meningitis; 6) Ototoxic medication usage; 7) Maternal exposure to Rubella; 8) Mother/child diagnosed with Cytomegalovirus; 8) Maternal diagnosis of Syphilis during pregnancy; 9) Persistent pulmonary hypertension (PPHN); and 10) Family history of hearing loss.

  The risk factors listed above are recorded by nursery staff and then sent to the Kiss Project via the Hearing Screen Report form.  Added to the form is information about scheduled follow-up testing appointments for infants who did not pass the newborn hearing screening.  This form is multi-colored and multi-copied for ease of distribution to the Kiss Project, parents and physicians and hospital record.  A Hearing Screening Report is completed on each infant born in its hospital.  If a parent declines testing or a baby is not tested due to equipment, protocol failure in the hospital, or transfer, this is noted on the report form, and sent to the Kiss Project.

Reports that contain risk factors for progressive or late onset hearing loss, or report a referral for additional hearing evaluations must be forwarded to the Kiss Project office within 24 hours of discharge from the hospital.  Reports that include a passing hearing screen result and void of risk factors are forwarded to the Kiss Project office within seven days of hospital discharge.  The number of Hearing Screen Report forms processed corresponds directly to the number of births in Kentucky, about 53,000. 

Upon receipt of the Hearing Screen Report forms, the Kiss Project staff organizes the forms into two categories: passing newborn hearing screening void of risk factors or refer on newborn hearing screening with or without risk factor(s) for late onset or progressive hearing loss.  Using the current system, Kiss Project staff manually counts all certificates passing hearing screening and void of risk factors received by birth hospital, retain the number for reference and quality assurance monitoring, then shred the documents.  All reports on infants with referred hearing screens or risk factors are entered into a tracking database.  Informative mailings including letters to parents explaining the risk factor or referred hearing screening; the need for further evaluation; a list of referral sources for infant hearing testing and a list of speech-language and hearing developmental milestones are sent.  Parents are invited to contact the Kiss Project office for assistance scheduling appointments or other concerns. 

Children are tracked through the diagnostic process in one of four ways: 1) A child that does not pass the newborn hearing screening may have a diagnostic follow-up evaluation scheduled by the staff at the birth hospital.  If this occurs, the hospital staff notes the date, time and place of follow-up on the Hearing Screen Report form.  Kiss Project staff contact the referral source for follow-up information about that child. Approximately 35%of follow-up testing reported enters into this pathway.  2) A direct referral from a conversation with Kiss Project staff.  Approximately 25% of parents receiving letters contact the Kiss Project office for assistance.  The Kiss Project office documents their appointment date and time and contacts the referral source for on-going information about the child's diagnostic process.  3) An audiology provider directly reporting to the Kiss Project staff.  As established in the HHRR program, audiologists are currently reporting using a paper form that is periodically mailed to them with a reminder to complete reporting about all infant hearing tests and all newly diagnosed children.  About 20% of children follow this diagnostic pathway.4) This pathway is reserved for families resistant to follow-up services that are at the highest risk for service lags.  A child that does not have updated diagnostic information in the database three months post initial contact will be re-contacted.  The child's primary care provider will be contacted to provide assistance with scheduling follow-up testing.  A family resistant to follow-up is referred to the HANDS program. 

In order to increase efficiency in follow-up timeliness, the Kiss Project staff proposes initiating of the Sound Start Surveillance System; a web based form for data entry so hospitals, audiologists, and early interventionists can have a quick, easily accessible format for sending information.  This also does not require the Kiss Project staff to re-key information provided.

Initially, eight to ten hospitals will participate in a pilot of the web-based reporting format.  Hospitals listed below may be selected based on their interest in participating in the pilot, their Internet capabilities, willingness to participate in training, statewide locations, urban and rural status and birth census. 

Selected hospitals will key in required fields on the website.  Kiss Project data management staff will capture, manipulate and store data daily.  Hospitals will only have the ability to enter data and unable to do a search.  The information available to audiologists and early interventionists will only relate to the hearing evaluation and any identified risk factors.

The Commission for Children has developed a web-based database that meets required security specifications. Data elements identified on the UNHS form along with test results fields will eventually be integrated into this system.  Hospitals will not have access to the mail data repository; they will only be able to transmit individual documents through the web-based system.  To further meet security requirements, each hospital will need a unique identifier and each person entering information per hospital will need a unique password.  Using this technique, the hospital requirements for electronic form submission are Internet access, a web browser, computer with monitor, and printer.

At this time, 45 of Kentucky's 62 birthing hospitals have Internet access within their hospital.  After working through the pilot of the electronic Hearing Screen Report process, other hospitals with Internet access can be allowed to take part in the electronic reporting.  Barriers to hospitals with Internet access include lack of Internet access to personnel completing forms, lack of training using Internet systems; and lack of printers for parental and physician mandated copies of forms.  Hospitals without Internet access have significant barriers to electronically submitting Hearing Screen Report forms in the near future.  The Kiss Project staff will work with each hospital individually to overcome these barriers.

The Department of Vital Statistics reveals that Kentucky is approximately two years away from implementing an electronic birth certificate.  The Department of Vital Statistics plans to provide training and Internet access counseling to hospitals not equipped at that time.  Collaboration with vital statistics will allow the Kiss Project to help any remaining hospitals gain the capability to complete the electronic format as they transition to the electronic birth certificate format.  In maintaining collaboration with Vitals Statistics, Kiss Project staff have completed data request evaluations and provided input about necessary data fields. 

Regional Coordinators, Kiss data staff and Commission for Children information support staff will assist hospitals with training needs and provide ongoing technical support.  Training manuals will be initially developed for the pilot hospitals and then revised based on the input and suggestions from those hospitals.  Overall data transmission via electronic format will reduce workload for hospital staff as they more easily meet mandated information submission guidelines and significantly reduce data entry and duplicity of workload by Kiss staff.

In addition to initial form entry, hospitals will eventually be able to complete Hearing Screen Report updates on readmitted infants after submission of their initial form and infants who return for an out-patient screen.  By quickly and easily submitting this information, children with later occurring risk factors such as elevated Bilirubin levels or meningitis can easily be updated within the Sound Start Surveillance System.

To further ease reporting and accessibility, interested audiologists will be assigned a unique username and password.  Audiologists will electronically submit information about tested infants and update diagnoses.  By making reporting easier and less time consuming, the number of audiologists reporting test data is expected to rise. 

The main data warehouse is currently operated through an Access 2000 database.  Most other database systems can easily integrate Access data with little or no conversion.  The Commission for Children is implementing a statewide database for tracking all Commission patients entitled the Computer Utilization Project (CUP).  After October 16, this project will also be utilized to track and manage all children referred through early intervention programs.  The Sound Start Surveillance System database will be prepared to integrate into this system to share information about referrals for early intervention and track the early intervention progress of Kentucky children.  To assure data field compliance for ease of data sharing, Kiss Project staff met with CUP project managers to formalize data plans and to integrate necessary changes for linkage into this system.  Linkage time is dependant on the entire CUP completion.

With initiation of funding, contracts will be established with a web-based developer for design, identified software needs and licenses will be purchased.  Estimated design and trial time for this project is three months.  Following the web-based design, Kiss staff will receive training and prepare to download data from the web-based format.  User guides will be complete at this time.  Internal training and preparation time estimate is one month.  With training complete, UNHS regional coordinators and Commission for Children staff will travel to hospitals to provide training and technical assistance.  Scheduling, training and travel time estimates are two months.  Seven months post initiation of funding; the Sound Start Surveillance System will be ready to receive documents transmitted from the pilot hospitals.  Three months of program implementation and troubleshooting will be completed before official revisions to the web based format and training process are implemented.  By the end of year one funding, the Sound Start Surveillance System program will be prepared to make expansion plans and program corrections. 

To increase availability of diagnostic audiology access statewide, the UNHS coordinators will obtain portable diagnostic ABR and OAE equipment. This will enable them to provide remote access to diagnostic audiology services and subsequently increase the reporting of follow-up services in identified underserved areas of the state.

d.  Collaborative Efforts

Statewide EHDI cannot be readily achieved by a single entity.  By continuing to build upon established relationships with families and consumers; hospital personnel; data managers; early intervention systems; the Department of Public Health, and the Department of Education the Kiss program will foster further interagency cooperation. Existing collaborative endeavors include: 1) a memorandum of agreement with the Commission on Deaf and Hard of Hearing (KCDHH) to provide culturally competent family centered training statewide; 2) Training initiatives with the Kentucky Early Years (KEY) program to prepare special education directors to accommodate children who are Deaf or Hard of Hearing; 3) Assisting KEY with translation of resource handbook for Deaf and Hard of Hearing children and their families; 4) Collaboration with the Department of Health HANDS program to provide resources to families resistant to follow-up, 5) Data sharing with KCDHH and the KBSR as well as National Organizations: CDC, MCHB and NCHAM; and 6) Collaborative computer initiatives with CUP program and FOCUS. In addition, the Kiss Advisory Board consists of families and consumers; pediatric neonatologists; otolaryngologists, Department of Education, Medicaid; Kentucky Hospital Association, audiologists; early interventionists and nurses.

In addition, the Kiss Project and the Sound Start Surveillance System align well with the hearing goals established in the Healthy People 2010 report.  These programs are meeting specific Healthy People 2010 goals by providing statewide implementation of UNHS; increasing the proportion of newborns who are screened for hearing loss by age one month and have audiologic evaluation by three months; and through linkage to services and easier reporting. These result in increase access by persons who have hearing impairments to rehabilitation services and hearing assistance devices.  The establishment of appointment reminders in the EHDI tracking system will ensure that infants at risk for progressive or late onset hearing loss receive notification of recommended hearing evaluations on schedule. 

These collaborative partners reside in state, public and private entities. The connection, reporting and collaboration with all interested partners, will fuel the success of the final product.

e.  Evaluation Plan

The Sound Start Surveillance System will evaluate each hospital's capacity to provide online data entry.  Selected pilot hospital's staff will be monitored for: accuracy of data entry; the number of Hearing Screening Reports agreeing with their birth/discharge census; and pass/refer percentage rates to assure compliance with established standards.  The pilot hospital staff, through consultation with UNHS regional coordinators, will also provide input into revisions needed prior to expansion of data entry online to additional birthing hospitals. 

UNHS regional coordinators will train audiologists and early interventionists within their respective regions to report consistently via the newly developed form and pathways.  Encouraging consistency in standardized reporting regionally will serve to optimize the timeliness in which infants and their families are served.  Audiologists and early interventionists feedback regarding the Sound Start Surveillance System efficiency will enhance its success.

This program will receive continuous evaluation through documentation of progress via querying the database and collecting numbers of infants screened, referred, reports received from follow-up diagnostics and warranted early intervention and the timeframes at which these are occurring statewide. Administrative staff will immediately address areas of concern related to reporting compliance.  The description of benefits and costs reports of this project will be collaborated statewide and shared with the CDC, the MCHB and the NCHAM. This information will also be given to Legislative Review Committees, The Early Childhood Authority, overseers of KIDS Now, and peer reviewed presentations at the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA) and the Kentucky Speech-Language and Hearing Association Conferences.

f. Staffing and Management System

The grantee of the federal CDC, Cooperative Agreement for Early Hearing Detection and Intervention (EHDI) Tracking, Research and Integration, will be the KY Commission for Children with Special Health Care Needs: Universal Newborn Hearing Screening (UNHS) Branch.  The chart on the following pages displays the placement of the KY Commission for Children in the organizational structure of the government of the Commonwealth of Kentucky.  Eric Friedlander is the Executive Director of the agency.  The Administrative staff of the UNHS grant will include a project director, three regional coordinators and data specialists. See appendix page ? for personnel allocation table) The Project Director, Michelle King, MS, CCC-A, is a Speech and Hearing Administrator and has worked towards the goal of EHDI for Kentucky since the HHRR was mandated through state legislation in July of 1986.  As the parent of a late identified child with hearing impairments, who is presently 19 years old and still receiving special education services, she is committed to the successful implementation of EHDI.  Stephanie Disney, MS, CCC-A, the UNHS Central Regional Coordinator with experience in the assessment of pediatric hearing disorders and overseer of the data management transition from the HHRR to UNHS, will serve as the Program Coordinator responsible for developing, implementing, and arranging training regarding data programming, formatting and collection for statewide surveillance and tracking of EHDI.Lou Ann Jones, M.S., CCC-A and Carolyn Kisler, M.S., CCC-A will serve as the East and West Region Coordinators, respectively, and assist in training and as a resource to birthing hospital staff, diagnostic audiologists and early interventionists.  The grant Administrative Specialist will be Stephanie Mitchell, BA. currently manages the UNHS data and reporting and has previously worked with the administration of the CDC HIV/AIDS Surveillance and Kiss grant. Paula Raphael, B.A. a temporary support staff, will assist with data management and reporting.  The staff members are employees of the Commission for Children.  The Commission for Children currently provides grant administration support for the MCHB funded Healthy and Ready to Work grant, KY Teach, and the Kentucky infants' sound start (Kiss) grants. The Sound Start Surveillance System will receive input from the Kiss Advisory Board composed of representatives from various agencies. The collaborating team includes pediatricians, hospital personnel, early interventionists, audiologists, parents, consumers, otolaryngologists, public school and university educators, and local health departments and staff of the Commission for Children. The Sound Start Surveillance System progress will be reported to Kiss Advisory Board meetings each grant year.

g. Organizational Structure and Facilities

The Kentucky Commission for Children with Special Health Care Needs (CCSHCN) was founded in 1923.  Through a network of 14 offices, located regionally throughout the state, the Commission for Children provides children with medical care, audiology and speech-language services, physical and occupational therapy, care coordination, and funding resources for these services for families who are uninsured or underinsured.  (See Appendix for Organizational chart on page )The children served are age's birth to 21 years and have a special health care need.  In February of 2001, the agency's Board of Commissioners approved a resolution to begin the process of merging the early intervention program, First Steps, with the Commission for Children.  This presents a great and exciting opportunity to strengthen and support both programs.  First Steps and the Commission for Children share many of the same philosophies, goals and values. This is also consistent with Governor Patton's KIDS Now initiative because the merger process will be looking at program strategies that support a seamless flow of services.  The merger also provides an opportunity to establish a consistent set of supports for families and children with special developmental, educational and health needs.

The following is a brief overview of shared program values: 1) a child is an individual with unique physical, developmental, emotional, social, educational, and cultural needs, as well as legal rights; 2) a child is a member of a family whose partnership and collaboration with the professionals, and others involved in their child's life is essential to the delivery of quality care; 3) as the child grows and develops towards independent adulthood, his/her needs will change; 4) cognitive and emotional development increase a child's ability to understand illness or disability; and with this awareness comes an increased need to be involved in the decision-making process concerning his/her own healthcare and future; 5) delivering quality individualized care to the child and family involves: assessment of health status; the determination of needs and strengths; the determinations of therapeutic/developmental interventions and comprehensive services required; and the development of a treatment/family service plan; and 6) services may include: primary and specialty health care; education; developmental interventions; therapies; nutrition, family support services; mental health services; and/or care coordination.

The planning for the merger of First Steps and the Commission for Children will occur in three phases.  The first phase involves technical points: accounting structure, program authority over budget and contracts, and personnel issues.  The second phase will involve a needs assessment.  The third phase will begin when the needs assessment ends.  It will be at that point that the process will begin to look at creating a truly merged program with an anticipated completion date of October 2001. 

A staff of 14 Commission for Children with audiologist's extensive pediatric experience in the area of diagnostics and treatment of hearing disorders provide services statewide.  They have recently obtained some state of the art diagnostic equipment to meet the best practices for diagnostic audiology services recommended in the Year 2000 JCIH Position Statement.  Services provided include a full range of diagnostic audiology assessments including ABR, OAE, hearing aid evaluation, fitting and verification of amplification devices, and audiology consultation. The audiologists are active members of the interdisciplinary teams that are found in the following Commission for Children clinics: Otology, Craniofacial, Cleft Lip and Palate, Cerebral Palsy and Neurology.  Each direct provider audiologist is also responsible for a number of counties within their region to provide hearing conservationist programs for public schools.  Regional collaboration with families, primary care providers, otolaryngologists, local health departments, early interventionists, and schools will be strengthened through the implementation of the Sound Start Surveillance System of EHDI surveillance and tracking.

From September 1986 through June 2001 the Commission for Children managed the Hearing High Risk Registry (HHRR) through state general funds.  The HHRR had met the needs of the infants identified and reported with hearing impairments through the development of collaborative relationships among birthing hospitals, local health departments, educational settings, hospitals, early intervention programs, physicians, private agencies and audiologists.  The HHRR provided training, educational materials, and consultation to promote UNHS.

In April of 2000, the Commission for Children was awarded a MCHB Newborn Hearing Screening Grant called: the Kiss Project.  Through this grant, Commission for Children representatives actively promoted UNHS through presentations, technical assistance, and development of educational information.  Principles of comprehensive, culturally competent, community-based, family centered coordinated care is presently woven into existing partnerships for identification, tracking, and follow-up. The Commission for Children audiologists have received training, technical assistance, and guidance through the National Center for Hearing Assessment and Management and the Marion Downs National Center and the Directors of Speech and Hearing Programs in State Health and Welfare Agencies.  This networking has supported and enhanced program development and implementation in Kentucky.

In July of 2000, the Commission for Children was appointed the lead agency in Kentucky for implementation of UNHS, as part of Governor Patton's KIDS Now Initiatives.  For the past year the UNHS Branch has focused on increasing the number of Kentucky birthing hospitals providing UNHS and standardizing their protocols.  Technical assistance has been provided to hospitals initiating and enhancing their UNHS programs.  With a vision to provide services that incorporate best practices in diagnostic audiology services, physiologic diagnostic equipment (namely Auditory Brainstem Response Equipment, Distortion Product Otoacoustic Emission Systems, multi-frequency tympanometers and Probe Microphone Measurement equipment have been purchased through various grant monies, Tobacco Settlement dollars and the Commission for Children audiology budget.

The UNHS projects can be credited with the start of exciting systems change in Kentucky. Birthing hospitals and state agencies are jointly working on the development of a statewide system for case finding, referrals, communication, and care coordination. Kiss Project staff are also working together to identify system barriers for children jointly served and to develop ways to remove those barriers through systems change and education. Children with special health care needs, who in the past were locked into either the private or public system of care, can now access both.  The benefits of interagency care coordination include: increased family and provider satisfaction, substantial financial savings for families, decreased travel and missed days from school and work, and improved functional outcomes for the children jointly served.

The awarding of this grant for the Sound Start Surveillance System would secure funding needed to ensure that previously laid foundations develop into a centralized statewide surveillance and tracking system for EHDI that collaborates with other child find programming.  The Commission for Children is committed to supporting EHDI through the tracking of individuals from universal newborn hearing screening prior to discharge, to further diagnostics by three months of age, and into appropriate interventions by six months of age.  To achieve this vision, the Commission for Children will 1) support the development and implementation of the Sound Start Surveillance System, 2) provide staff to perform diagnostic evaluations, 3) support collaborative linkages to other private and public entities on state and national levels; and 4) join with parents, payers, providers of health, education and social services to implement and evaluate a comprehensive, innovative statewide program for EHDI.

 The Commission for Children has been a bold and innovative leader in demonstrating how a state Title V CSHCN Program can incorporate direct care services, data management, and statewide resources into an effective system of care coordination.  Enhancements through training and use of Life Maps, a care coordination developmental assessment tool, will promote awareness of hearing, speech and language milestones.  This will lead to increase referrals for diagnostic services when developmental delays are suspected.  The Commission for Children has completed its 78th year of service to Kentucky children with special health care needs.  The impact of managed care makes its mission to plan, develop, provide, and evaluate public statewide systems of care CSHCN even more critical.The Commission for Children is fully committed to helping children and families statewide to maximize their potential as demonstrated through a long successful relationship with MCHB through federally funded grant programs including the CHOICES national care coordination grants, the KY TEACH grant, and the Kiss grant.  The Sound Start Surveillance System will exemplify these commitments.

h. Human Subjects Review  (Not Applicable)

Goals/Objectives and Evaluation