Project Title: Kiss Project (Kentucky infants' sound start)
Project Directors: Ann Marks, Executive Director, Kentucky Commission for Children with Special Health Care Needs: Phone: (502) 595-4495 Fax: (502) 595-4673 Email: Ann.Marks@mail.state.ky us
Organization Name: Kentucky Commission for Children with Special Health Care Needs, 982 Eastern Parkway, Louisville. KY 40217
Contact Person: Michelle King, Kentucky Commission for Children with Special Health Care Needs: Phone (502) 595-4459, ext. 286; Email: Michelle.King@mail.state.ky.us
Project Period: 4 Years From 4/1/00 to 3/31/03
Organizational Setting: The Kiss Project builds upon the KY Commission's direct pediatric audiology experience and its management of the statewide Hearing High Risk Registry for the last 13 years.
Purpose: The Kiss Project will unite the KY Commission with relevant provider partners (public and private agencies) and families in the development of an infrastructure to assure identification, referral, and follow-up services for infants. The primary targeted outcome of this statewide Universal Newborn Hearing Screening program is to reduce the age at which children with hearing impairments are identified (by 3 months) and begin early intervention services (by 6 months).
Problem: Three of every 1,000 infants are born with an invisible, significant hearing loss; if undetected, the loss will lead to significant delays in speech, language, cognition, social, and emotional development (Yoshinago-ltano, 1998). Approximately 52,000 children were born in Kentucky last year, but only 19,134 of these infants received hearing screening prior to hospital discharge. Those infants who did not pass the initial screening were referred for additional diagnostic services and appropriate follow-up treatment and early intervention. However, 32,866 infants did not receive screening. This means that at least 100 children from well baby nurseries alone may yet be in need of identification, diagnosis, and care. The Kiss Project will bring together community partners and families to build an infrastructure and create systems changes that will assure every child born in Kentucky is screened and receives critical services that will prevent unnecessary hearing loss and ensure appropriate, timely interventions that will produce optimal outcomes for children with hearing disorders.
Goals And Objectives:
Goal 1: To increase the number of infants receiving Newborn Hearing Screening prior to hospital discharge.
1.1 Enhance the capacity of birthing hospitals to provide Universal Newborn Hearing Screenings throughout the state of Kentucky through education, technical assistance, training and funding sources for the initiation of these programs.
1.1.1 Determine the present capacity of birthing hospitals to conduct UNHS.
1.1.2 Implement training programs designed to address the identified needs and barriers for UNHS hospital personnel to become efficient screeners for UNHS.
1.2 Raise awareness among non-health providers about the importance of UNHS and screening infants with risk factors.
Goal 2: To increase the accessibility of objective diagnostic equipment regionally and develop protocols and training to improve quality of diagnostic and treatment services for newborns with hearing deficits.
2.1 Enhance the capacity of the existing service delivery system to provide objective diagnostic audiological assessments regionally for referral follow-up and tracking.
2.1.1 Purchase and implement the use of new objective diagnostic equipment.
2.1.2 Implement innovative training programs, based on the identified needs for providers at community based levels.
2.1.3 Work collaboratively with the Advisory Board to assess availability of providers statewide.
2.2 Provide opportunities for audiologists in Kentucky to become certified as referral sources for UNHS program.
2.2.1 Identify audiologists in Kentucky presently providing diagnostic audiological services for infants.
2.2.2 Create Audiology Committee chaired by UNHS Program Coordinator to develop certification requirements to competently assess infants' hearing status.
Goal 3: To increase collaboration statewide with families, hospitals, medical homes, diagnosticians and early interventionists through outreach, educational materials, and presentations, so initiation of services is timely, family-centered, culturally competent and easily located and accessible.
3.1 Work collaboratively to identify areas of improvement needed to create a seamless flow from hospital referral to early interventionist
3.1.1 Establish an Advisory Board to strengthen collaboration between parties interested in UNHS, and an advocacy office to act on behalf of parents and families to ensure that children with special circumstances receive service coordination.
3.1.2 Work with families to identify barriers existing in seamless flow of services from hospital screen through warranted intervention
3.2 Educate medical homes and medical training programs about UNHS and appropriate follow-up
3.2.1 To act as a resource center for pediatricians with deaf or hard of hearing children in their caseloads and provide training on the importance of hearing screening and appropriate follow-up services and how and where to refer.
3.2.2 Work with physician training programs in Kentucky to ensure that doctors entering communities in Kentucky have up to date training about infant hearing.
Goal 4: To improve the data management and follow-up tracking of the Universal Program through improvements in technology and expansion of existing Hearing High Risk Registry systems.
4.1 Expand existing HHRR database to adapt to the Kiss Project
4.1.1 Implement database expansion program
4.1.2 Implement tracking forms that are accurate and easy to use.
4.1.3 Develop Advocacy center tracking database
4.2 Implement training procedures for data reporting and database navigation
4.2.1 Train hospital staff about appropriate implementation and use of data management programs
4.2.2 Train KY Commission audiologists about navigation of database and entering appropriate data
4.2.3 Compile data about infant hearing loss in Kentucky including incidence, causative factors, diagnosis and intervention time
4.2.4 Develop program that allows hospitals and interventionists to electronically send and receive information about the Kiss Project
Methodology: Methods to be used: 1) Needs assessments and planning including focus groups and surveys; strategic planning by the Advisory Committee about statewide activities and evaluation strategies; meetings of Commission, hospitals, other interventionists, and parents to set targets for and participate in programs; and project staff as they work with state organizations; 2) implementation including teamwork of staff, parents, hospitals, and interventionists in developing the collaborations and monitoring the changes in practices and referral rates of community providers; trainings of agency staff and community providers, families, hospitals, and interventionists; direct service programs with Commission qualified infants; 3) dissemination of processes and products developed through web sites, newsletters, and presentations at local, regional, and national professional and parent meetings; and 4) evaluation and monitoring of outcomes for infants and systems and costs of the project.
Evaluation: Levels of evaluation include: 1) systems changes within the KY Commission and how agencies collaborate among themselves and coordinate services; 2) evaluation of the specific programs put in place by the KY Commission through the Kiss Project in terms of participation, evaluation, and outcomes perceived by staff, referral sources, families, hospitals, and interventionists; 3) evaluation of the effects of systems and specific programs on changes in referral and management outcomes of infants; 4) description of the benefits and costs of the project. Evaluation of this project will be coordinated with the MCHB and CDC in consensus data collection and evaluation of protocols. The project will also collect specific data sets including referral rates for children, incidence of hearing loss in Kentucky, and location of interventionists statewide throughout the 4 years of the project. Use of this data will determine the success of the project and will be utilized to determine project expansion goals to meet the needs of Kentucky infants and families.
ANNOTATION
When infants born with hearing impairments are identified late (at approximately 2 years of age), the results are significant delays in speech, language, social, cognitive and emotional development. However, when infants born with hearing impairments are diagnosed and receive intervention by 6 months of age, a positive impact on their development occurs. The KY Commission proposes the "Kiss Project- Kentucky infants' sound start" to address the need for universal newborn hearing screening in Kentucky by building upon its direct pediatric audiology experience and its management of the statewide Hearing High Risk Registry. The purpose of this project is to: 1) create an effective system of statewide Universal Newborn Hearing Screening in the state of Kentucky with provision of technical assistance by 12 regionally located KY Commission Audiologists; 2) complete Audiology diagnostic services for referred infants (those that do not pass screenings) within 3 months of hospital discharge; 3) initiate family-centered early intervention by 6 months of age with collaboration of the child's medical home; 4) manage data through evolution of the Hearing High Risk Registry into the Kentucky Universal Newborn Hearing Screening Program; 5) share statistical information with the National Database within the Centers for Disease Control (CDC). This project will build on the long history of the KY Commission for Children with Special Health Care Needs in collaborating with community agencies in a variety of federally funded projects.
KEY WORDS
infants, Universal Newborn Hearing Screening, Kentucky, KY Commission, data management, medical home, family-centered, Centers for Disease Control, collaboration, Early Intervention, Kiss, CSHCN
PROJECT NARRATIVE
A. PURPOSE OF THE PROJECT
The Kentucky Commission for Children with Special Health Care Needs is a leader among state Title V Programs in providing direct pediatric diagnostic audiology services, ruling amplification devices, collaborating with Early Intervention Programs, and managing the Hearing High Risk Registry (HHRR). During die past two years the HHRR has increased the number of hospital contacts, improved collaboration with medical homes, and increased outreach education. Of the 65 birthing hospitals in Kentucky, 16 arc conducting Universal Newborn Hearing Screenings: Five of these began providing universal screening in the last two years with technical assistance from the KY Commission audiology staff.
Three of every 1000 infants arc born with an invisible, significant hearing loss: if undetected, the loss will lead to significant delays in speech, language, cognition, social, and emotional development (Yoshinago-ltano, 1998). Implementation of Universal Newborn Hearing Screening has a significant positive impact on reducing age of identification and the initiation of early intervention. Many national professional groups support the implementation of UNHS. In 1994, the Joint Committee on Infant Hearing (supported by the American Speech and Language Association, the American Academy of Pediatrics, and the Directors of Speech and Hearing Programs in State Health and Welfare Agencies) issued a statement that all infants with hearing loss should be identified before the age of three months. "Healthy People 2010" (1999) also includes a revised newborn hearing screening goal of identification of all newborns with significant hearing impairments and enrollment in early intervention by age 6 months.
Approximately 52.000 children were born in Kentucky last year. The existing HHRR program provided screening to 19,134 of these infants (approximately 40% of live births recorded) prior to hospital discharge. Those infants who did not pass the screening were referred for additional diagnostic services: referral information was tracked by the hospitals providing services, the HHRR. and by the Kentucky Early Intervention Programs. Although a framework for universal screening is currently in place for diagnosis, treatment, data management, and collaboration with service providers, many barriers to full statewide implementation remain.
Implementation for Universal Newborn Hearing Screening requires 1) funding for staff contractural trainers; 2) training of hospital personnel to conduct screenings; 3) training audiologists to enhance their assessment and service provision skills for this young and unique population; 4) state of the art diagnostic equipment for audiologists to provide appropriate follow-up diagnostics and treatment for referred children; and 5) enhanced data management systems arc needed to facilitate communication among screening, diagnostic, treatment, and program evaluation personnel, as well as to collect the information that will verify outcomes and will guide future systems development.
The KY Commission proposes the Kiss Project (Kentucky infants' sound start) to address the needs of Kentucky children. The Kiss Project will:
The Kiss Project will generate change at multiple levels. Families will receive immediate support and guidance to access appropriate follow-up services and early intervention. Community-based service providers will receive education on current standards of care and best practice protocols for infant hearing care. Woven together informed families, well-trained providers, and supportive technology for data management will create a seamless system promoting universal newborn hearing screening and follow-up services for infants in Kentucky.
B. ORGANIZATIONAL EXPERIENCE AND CAPACITY
The KY Commission, Founded in 1923, has a long and distinguished history of service to Kentucky children with special health care needs and their families. The program provides diagnosis, case management, and direct medical care and rehabilitative services to indigent children ages birth to 21 with a qualifying condition including hearing loss or impairment. Services are provided statewide through local clinic sites in 14 regions (see Appendix B for Map and Appendix C for List of Regional Offices).
In addition to other pediatric specialists, the KY Commission has 12 audiologists located throughout the state who have extensive experience in pediatric diagnostics and treatment of hearing disorders. Services include a full range of diagnostic audiology assessments, hearing aid evaluation. Fitting of amplification devices, and audiology consultation. Audiologists are vital team members in thc KY Commission's multi-disciplinary clinics including Otology, Craniofacial, Cleft Lip and Palate, Cerebral Palsy and Neurology. KY Commission audiologists are involved in community outreach services including community education: providing equipment on loan. and training volunteers to conduct mandated hearing conservation screening in Kentucky schools. The Kiss Project will strengthen and enhance collaborative efforts between KY Commission audiologists and other community-based providers including medical homes, Otolaryngologists, local health departments, early interventionists and local schools.
For the past 13 years the KY Commission has managed thc Hearing High Risk Registry (HHRR) supported by slate general funds. The HHRR has worked to meet the needs of the infants identified with hearing impairments through the development of collaborative relationships among local health departments, educational settings, hospitals, early intervention programs, physicians, private agencies and audiologists. The HHRR has provided training, educational materials and ongoing consultation to families and the provider community to promote universal newborn hearing screening in Kentucky.
KY Commission audiologists and other stall members are actively promoting universal newborn hearing screening statewide through presentations, technical assistance, and development of educational information. Principles of comprehensive, culturally competent, community based, family centered and coordinated care are woven into existing partnerships for identification, tracking, and follow-up. KY Commission audiologists have received training, technical assistance and guidance on UNHS implementation through the National Center for Hearing Assessment and Management and the Marion Downs National Center. For the past two years the HHRR has focused on improving service delivery with a vision of evolving into the Kentucky UNHS program. KY Commission audiologists have provided technical assistance to hospitals initiating UNHS, and the KY Commission has worked to enhance its capacity to provide diagnostic follow-up services. Due to budgetary constraints. the KY Commission has only been able to purchase five physiologic diagnostic equipment units, Distortion Product Otoacoustic Emission systems (DPOAEs), to share among its regional offices. This shared arrangement limits accessibility and fragments continuity and timeliness of diagnostic follow-up services for referred infants. The Kiss Project will allow the KY Commission to place this equipment in each regional office. Thus eliminating a significant barrier to timely diagnosis and early intervention.
The HHRR project can be credited with the start of exciting systems changes in Kentucky. It has established a foundation of collaboration between birthing hospitals and state agencies to develop a statewide system for joint case finding, referrals, communication, and care coordination that is necessary for implementation of UNHS. The HHRR collaborators are working together to identify systems barriers for children jointly served and to develop ways to remove those barriers though systems change and education. The Kiss Project will assure that children with special healthcare needs, who in the past were locked into either the private or public system of care, will be able to access both. The Kiss Project will also promote interagency collaboration for service coordination resulting in 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 Kiss Project would secure the funding needed to ensure that these seedling efforts develop into a universal newborn screening program for all Kentucky children. The KY Commission is committed to supporting universal newborn hearing screening prior to discharge, further diagnostics by three months of age, and appropriate interventions by six months of age. To achieve this vision, the KY Commission will:
The KY Commission also has a long successful relationship with MCHB and has demonstrated the capacity to managed federally funded projects through several grant programs including the CHOICES national care coordination grants. State Systems Development Initiative (SSDI) grants, and the recently awarded KY TEACH grant, a four year $1.2 million adolescent transition project.
C. ADMINISTRATION AND ORGANIZATION
Tile grantee of the federal MCHIP funded Integrated Services for Children with Special Health Care Needs: Universal Newborn Hearing Screening Grant will be the KY Commission for Children with Special Health Care Needs. The chart on the following page displays the placement of the KY Commission in the organizational structure of the government of the Commonwealth of Kentucky.
[CHART]
Ann Marks, RN, BSN, CDMS, CCM, is the Executive Directory of the KY Commission. The Administrative staff of the UNHS grant (see Appendix D for Biographical Sketches and Appendix E for job Descriptions) will include the Project Director. Michelle King, MS. CCC-A. Ms. King is the Speech and Hearing Regional Coordinator and has worked with the HHRR since it was mandated through state legislation in July 1986. As the parent of a late identified child with hearing impairments, who is presently 17 years old and still receiving special education services, she is committed to the successful implementation of Universal Newborn Hearing Screening. Stephanie Disney, MS. CCC, an audiologist with experience in the assessment of pediatric hearing disorders and manager of the HHRR, will serve as the Program Coordinator responsible for developing, implementing, and arranging training regarding clinical aspects of UNHS. Pat McKown, MA. CCC-A, will serve as the Coordinator of a Regional Model Program in Owensboro, KY. Nine other CCSHCN staff audiologists will be participating in consultative services, technical assistance following training and continued diagnostics in their respective regions. The grant Administrative Assistant will be Sarah Lyons, BS, who currently manages the HHRR data and reporting and who worked with the administration of the CHOICES grants. These staff members are current employees of the Commonwealth of Kentucky.
The Kiss Project will receive direction from an Advisory Board composed of representatives from various agencies. This collaborating team will include the KY Commission, pediatricians, hospital personnel, early interventionists, audiologists, parents, consumers, otolaryngologists, public school and university educators, and local health departments. The Advisory Board will meet twice each year. The Kiss Program Coordinator and Grant Manager, in consultation with the Director and project consultants, will plan and conduct these meetings.
D. AVAILABLE RESOURCES
Many resources are available to the children and families living in Kentucky, especially those who reside in larger cities. There are currently 65 birthing hospitals (see Appendix F) and 14 KY Commission offices across the state. Each county has a health department and early intervention program. Numerous private agencies and health care practices, parent-infant programs, and pre-schools provide services to infants. Many of these private agencies receive funding from federal, state, local, and private sources and are mandated to collaborate with public agencies as part of the funding arrangement. The KY Commission already collaborates with many programs across the state through regional efforts, statewide Memoranda of Agreement, and in partnerships established through the KY TEACH Project.
Kentucky law mandates that slate agencies collaborate to serve children with special healthcare needs. One example of collaborative practices in Kentucky is the Health Care Partnerships in the Medicaid Program. These partnerships are coalitions of healthcare providers in both public and private sectors that offer comprehensive medical and healthcare services through an integrated service delivery network to Medicaid beneficiaries who live in designated regions (see Appendix G for Memorandum of Agreement). The Kiss Project will collaborate with the Medicaid managed care partnerships to assure identification, referral, diagnosis, and follow-up services for infants and their families whose medical care is managed and covered by the partnerships.
Individuals and representatives from various agencies and programs will participate in the implementation of the Kiss Project. Examples of collaboration include the following:
(See Letters of Commitment in Appendix H)
Goal 1 is to increase the number of infants receiving newborn hearing screening prior to hospital discharge has support from the medical and service community. All of the 65 birthing hospitals in Kentucky support the implementation of UNHS based on the unanimous responses to this question in the Needs Assessment Surveys. Early interventionists such as First Steps, Easter Seals, health departments, and physicians have pledged their support for universal screening. In their letters, parents or children with later diagnosed hearing loss strongly support testing the hearing all infants.
Goal 2 is to increase the accessibility of objective diagnostic equipment regionally and develop protocols and training to improve the quality of diagnostic and treatment services for newborns with hearing deficits. The KY Commission is committed to providing equipment and training to audiologists statewide. By working with professional organizations such as KSHA and by using our locations statewide. the KY Commission will be able to locally train professionals to meet the needs of deaf and hard of hearing children following the suggested standard of care.
Goal 3 is to increase the collaboration statewide with families, hospitals, medical homes, diagnosticians, and early interventionists through outreach, educational materials, and presentations so initiation of services is timely, family centered, culturally competent and easily located and accessible. An Advisory Board of parties interested in the diagnosis and management of deaf and hard of hearing children will be established. First Steps and the Division of Adult and Child Health (KY Dept for Public Health) have committed to working with the Kiss Project as standing members of the advisory board. Other willing participants in the Advisory Board include: a) Dr. Dan Stewart. Director of Newborn Hearing Screening Programs at the University of Louisville Hospital. Baptist Hospital East, and Kosair Children's Hospital, b) Mr. Andy Hensley, an early interventionist who is also the parent of a deaf and hard of hearing child, c) The Kentucky Early Years Program, and d) parents of deaf and hard of hearing children such as Theresa Johnson and Michael and Vicki Shea. People and organizations willing to collaborate in development of a coordinated system of hearing related services for Kentucky children include the following: a) Kentucky Birth Surveillance Registry, b) health departments, c) hospitals such as Methodist Hospital, Ephraim McDowell, and Owensboro-Mercy Health System, d) centers for children with developmental delays such as Easter Seals, and the Child Development Centers of the Bluegrass, e) Kentucky School for the Deaf, f) School systems such as the Rowan County Board of Education, and g) Pediatricians and otolaryngologists such as Dr. John Loucks, Dr. Francis Smith and Dr. Don Cantley. The Kiss Project will also work closely with families of identified infants with hearing loss to identify needs and perceived barriers and then to present workshops directed towards implementing solutions to overcoming these issues. This process will actively involve parents and advocacy groups. The KY Commission, thought management of the HHRR, has worked very closely with any of the collaborating partners since 1986 and embraces the opportunity to continue coordination through the Kiss Project. Staff from the KY commission, the birthing hospitals, birth surveillance, KSHA, and vital statistics will continue to work collaboratively to ensure successful outcomes for all infants with hearing loss. Continued collaboration with national organizations such as NCHAM, AAA and ASHA will provide additional resources for Kentucky children.
Care coordinators located at the KY Commission and the collaborating agencies will work with families and providers to identify children in need of services, refer to appropriate agencies, coordinate care with other community based agencies, and ensure that medical records are exchanged properly. A goal of this collaborated endeavor is to leach families how to be their child's care coordinator as they grow from infancy to preschool and school age.
Goal 4 is to improve the data management and tracking of Universal Newborn Hearing Screening in Kentucky. By improving data management and follow-up tracking through enhanced technology and expansion of the existing Hearing High Risk Registry, the Kiss Project will be able to accurately assess needs related to UNHS. The KY Commission is dedicated to providing resources for expanding data systems. KY Commission statistical and systems staffs will assist Kiss Project staff members and collaborative partners including the Kentucky Birth Surveillance Registry. Vital Statistics, and others in the development of a UNHS database. One of the most exciting outcomes of the Kiss Project will be the establishment of a collaborative and coordinated data infrastructure to support ongoing program development and needs assessment activities. The flowchart on the following page gives a detailed description of the data management process.
Commission for Children with Special Health Care Needs / Kiss Data Flow Chart
E. IDENTIFICATION OF TARGET POPULATION
The target population is all children born in Kentucky. There are approximately 52,000 births in Kentucky each year. An estimated 1-3 of every 1000 health infants and 4-6 of 100 intensive care unit infants will eventually be diagnosed with significant bilateral hearing impairments (AAP, 1999). The Kiss Project will create effective changes in the systems of care in Kentucky that will support infants from referral through intervention and beyond. Last year 60% of Kentucky's infants did not receive physiological hearing screenings prior to hospital discharge and only 16 (most often found in larger metropolitan areas) of 65 birthing hospitals are currently performing physiological hearing screening on newborns.
The surveys also identified that physiological assessment technology is not available to audiologist to provide the standard of care for assessment of the birth to 3 month population: many also lack trailing to provide follow-up diagnostics and treatment for referred infants.
UNHS requires an entire community of health care providers to collaborate efforts to meet the hearing needs of infants and young children. No one agency alone could provide comprehensive service delivery to infants and young children throughout Kentucky. By expanding on the infrastructure of HHRR, the Kiss Project will enhance the networking of families, hospitals, medical homes, audiologists, early interventionists, and advocates. Each important piece of the young puzzles will be addressed so that a clear and accessible pathway is available for families to follow. On the next page you will find the Kiss Newborn Hearing Screening Pathway which depicts a patient's movement through the system. This pathway was developed based on the California UNHS model.
Kiss Newborn Hearing Screening Pathway
F. NEEDS ASSESSMENT
In July 1986 HHRR was mandated by KRS 213.046(1). At that time, Kentucky was one of only a few states implementing this type of program. Studies have shown that at their best, High Risk Registries only identify 50% of infants with significant permanent hearing loss (NCHAM, 1999). In Kentucky, only 40 percent of infants born in 16 of 65 hospitals are screened.
During 1999, Needs Assessment Surveys developed by the Marion Downs National Center were sent statewide to Audiologists, Hospitals, and Early Interventionists. The results of the returned surveys revealed significant obstacles to overcome to achieve UNHS. The surveys identified that physiologic assessment technology is not available for audiologists so they are not able to provide the preferred standard of care for assessment for the birth to 3-month population. Many respondents also expressed need for training to provide follow-up diagnostics and treatment for referred infants.
The Survey on Pediatric Audiological Services regarding Audiological Assessment and amplification fitting for children birth to 36 months revealed that statewide, the referral and funding source for these children was the KY Commission. It also revealed that the average age of referral for filling or referring children for amplification ranged from 9 months to >18 months with the majority being at the upper end. Lack of physiologic testing measures was obvious outside of larger metropolitan areas. Twenty-five percent of those responding reported that they fit amplification on infants and children 0-36 months, but also identified the number of fittings in that range in the last year was 0. These responses alone suggest that Kentucky's ability to identify children in the birth to 3 month range and to refer for early intervention is well below the standard of care endorsed by Health People 2010. The Kiss Project will assure early identification of infants and will assure that service providers have the skills and knowledge to care for this special population. The Kiss Project will expand and strengthen service provider collaboration. Efforts will focus on transitioning infants referred from hospitals screenings through diagnostic services and as needed amplification and early intervention. The Birthing Hospital Surveys returned indicated that all were participating in the state mandated HHRR by completing certificates of risk factors and forwarding them to the KY Commission for tracking and referral services. Only 19 of 36 hospitals responding to the survey reported they provided physiologic screening. Three hospitals only screened NICU infants, two only if physician ordered, and one referred screenings to outside source. There were several barriers to implementation of UNHS identified throughout the 36 surveys. The barriers included: 1) lack of physiologic screening equipment, 2) lack of screening staff, 3) availability of resources for follow-up, and 4) lack of tracking mechanisms for referred children.
G. COLLABORATION AND COORDINATION
One of the major objectives of the Kiss Project is to improve interagency collaboration and coordination to build a seamless system that includes infants, their families, birthing hospitals, medical homes, healthcare providers, diagnostic audiologists, early interventionists, education and social service agencies. The KY Commission has a long history of collaborative endeavors with public and private agencies and individual service providers. The HHRR was developed through a collaboration between the state Title V agency, private practitioners, pediatricians, hospital personnel, local health, early intervention programs. KY Commission for the Deaf and Hard of Hearing, and state offices for vital statistics. The elements of service include ide
ntification of children and families who would benefit from the services of diverse agencies, facilitating referrals, care coordination, and exchange of medical records.
Team members from various agencies are interested once again in uniting their services to benefit all infants born in Kentucky. The Kiss Project will expand the existing HHRR collaborating group to include additional medical partners: Kentucky Medicaid, the Medicaid managed care organizations, the Kentucky chapters of the American Academy of Pediatrics and the American Medical Association, and the variety of educational and social service agencies as indicated previously. The Kiss Project will expand and strengthen these agency collaborations for infants with special healthcare needs and their families in Kentucky. Efforts will focus on transitioning infants referred from hospital screenings through diagnostic services and, as needed, amplification and early intervention.
Involvement of individuals with Hearing impairments and their families will be a very important part of the Kiss Project. Parents of infants and children with hearing loss as well as adults with hearing loss will be members of the Advisory team. Parents have pledged their support to UNHS. On the following page you will find Alex's amazing story about the benefits of early diagnosis and treatment.
ALEX'S STORY
by: Alex's parents, Courtney & Tim
It's hard to believe as we prepare to celebrate Alex's 3rd birthday and his entrance into preschool, how amazing his story is. As conscientious new parents, my husband and I believed we had taken all the necessary precautions to ensure a healthy and normal start to our son's life: good prenatal care, proper nutrition, consulting with family members about any high risk heredity factors, selection of a highly recommended pediatrician. We also felt our professional backgrounds as speech-language pathologists (we met in graduate school) had prepared us to identify any difficulties, particularly in speech and language that our child might have. We felt even more relieved when our son arrived after a perfectly normal labor and delivery. So, both of us were surprised when "ABR" was listed on our newborn son's bassinet as a test to be completed before he left the hospital. "But he doesn't have any high-risk factors," I protested. The technician then explained that Alex's pediatrician had instituted universal hearing screenings for all the babies he saw.
Our professional backgrounds again reassured us, even after he failed the initial screening, that there were a number of reasons for a "false" positive result. After all, this was a child that responded to voices, startled to loud noises, and generally behaves as a "hearing child". That's why we were stunned to be told at his full ABR that he had at least a moderate hearing loss. It was at that time that our real "EDUCATION" began. We did not realize that only 50% of children with hearing losses have a known risk factor at the time of birth. We also didn't realize how NORMAL a child with hearing loss such as Alex's appears as an infant. It requires formal audiological testing, specifically an ABR or OAE to identify children as young as he was. We also learned that Alex really did have a high risk factor, a family history of hearing loss/deafness. News of Alex's hearing loss jogged Great Uncle Harry's memory about his 2 deaf uncles and 1 deaf aunt, four generations removed from my son.
But, despite all the misunderstandings and potential pitfalls, Alex's story is one of triumph. A triumph for universal hearing screening, a triumph for early hearing aid use, and a triumph for early speech and language intervention. As he approaches his third birthday, he is as normal as any other preschooler. He actually has better speech skills than many of his peers. He is living proof that earlier diagnosis and treatment is not only better, it's the only way.
H. GOALS AND OBJECTIVES
The Four goals of the Kiss Project are to: 1) increase the number if infants receiving Newborn Hearing Screening prior to hospital discharge; 2) increase the accessibility of objective diagnostic equipment regionally and develop protocols and training to improve quality of diagnostic and treatment services for newborns with hearing deficits; 3) increase collaboration statewide with families, hospitals, medical homes, diagnosticians, and early interventionists through outreach, educational materials, and presentations so initiation of service is timely, family-centered. culturally competent and easily located and accessible; 4) improve the data management and follow-up of the Universal Program through improvements and expansion of the existing Hearing High Risky Registry. The goals and objectives are displayed in the following chart, along with planned activities and evaluation criteria.
The collaborating team who will implement this goal includes the KY Commission for Children with Special Health Care Needs, KY Medicaid and Medicaid managed care organizations, the KY Children's Health Insurance Program, Pediatricians, hospital personnel, medical training programs at the University of Kentucky and the University of Louisville and vital Statistics. The collaborating team who will implement this goal includes the KY commission for Children with Special Health Care Needs, MCHIP funding; Audiologists from hospitals, public and privately funded practices or agencies, KY Medicaid and Medicaid managed care organizations, KY Children's Health Insurance Program, KY chapters of the American Academy of Audiology. (Collaborators include: KEY program, Bridges program, Kentucky School for the Deaf, Dr. Dan Stewart, Lexington Hearing and Speech Center, Easter Seals, First, Bellefonte Hospitals, Ephriam McDdowell Regional Medical Center, Murray-Calloway County Hospitals, parents and early interventionists, Kentucky Department of Education and Jefferson County educational audiologists.) (The Hearing High Risk Registry utilizes an Access format which is the proposed system for expansion.)
Goal 1:To increase the number of infants receiving newborn hearing screening prior to hospital discharge
1.1 Enhance the capacity of birthing hospitals to provide Universal Newborn Hearing Screenings throughout the state of Kentucky through education, technical assistance, training and funding sources for the initiation of these programs
1.1.1 Determine the present capacity of birthing hospitals to conduct UNHS.
1.1.1 Conduct groups to identify systems barriers to implementing Newborn Hearing Screening
Focus groups include variety of consumers and providers
List of barriers and needs
1.1.1b Survey pediatricians and birthing hospitals to identify their needs and barriers to Universal programming
50% of initiated surveys completed
Broad base of pediatricians and hospitals complete survey
1.1.1c Develop resources and aid hospitals in obtaining hearing screening equipment
90% of Birthing Hospitals have appropriate screening equipment
1.1.2 Implement training programs designed to address the identified needs and barriers for UNHS hospital personnel to become efficient screeners for UNHS
1.1.2a Coordinate with KY Commission audiologists, contractual audiologists to develop training materials, certify audiologist trainers, and conduct training statewide
100% of audiologists trainers certify by peer review of training technique
1.1.2b Train birthing hospital screeners to provide testing and make appropriate referrals
Training opportunities conduct within 2 hours travel time of all birthing hospitals
90% of hospitals have trained screener on staff
1.2 Raise awareness among non-health providers about the importance of UNHS and screening infants with risk factors.
1.2a Collaborate with Kentucky Speech Language Hearing Association and other interested parties to conduct informational meetings about UNHS and how to make referrals.
Develop report on awareness of UNHS among non-health providers
# of meetings and increase in referrals
1.2b Develop and distribute educational materials in multiple media.
Educational materials distributed to collaborators and %80 of First Steps PSC's.
Goal 2: To increase the accessibility of objective diagnostic equipment regionally and develop protocols and training to improve the quality of diagnostic and treatment services for newborns with hearing deficits.
2.1 Enhance the capacity of the existing service delivery system to provide objective diagnostic audiological assessments regionally for referral follow-up and tracking.
2.1.1 Purchase and implement the use of new objective diagnostic equipment.
2.1.1a Purchase 7 Diagnostic Distortion Product Otoacoustic Emissions units.
7 units of designated equipment on site at regionally located KY COMMISSION offices.
2.1.1b Provide training for usage and interpretation for audiologists using new systems.
100% of KY Commission audiologists demonstrate proficiency with new systems.
2.1.2 Implement innovative training programs, based on the identified needs for providers at community based levels.
2.1.2a Provide access to Continuing Educational Units specific to UNHS for KY Commission Audiologists
100% of KY Commission audiologists complete eight Continuing Educational Units specific to UNHS
2.1.2b Bring national speakers to Kentucky for training programs.
Programs, agendas, and participant lists and evaluations.
2.1.3 Work collaboratively with the Advisory Board to assess availability of providers statewide.
2.1.3a Conduct Advisory Board meetings to discuss locations and accessibility of diagnostic audiological services available statewide.
Minutes from all advisory team meetings circulated
2.1.3b Establish an electronic mailing list
List of mailing list members.
2.2 Provide opportunities for audiologists in Kentucky to become certified as referral sources for UNHS program.
2.2.1 Identify audiologists in Kentucky presently providing diagnostic audiological services for infants.
2.2.1a Gather information from existing providers about services available for infants at their sites
75% of existing providers contacted
Audiology committee and Audiology community to convey information
2.2.1b Develop UNHS referral source list comprising existing providers meeting certification requirements
Directory of UNHS referral sources published
2.2.2 Create Audiology Committee chaired by UNHS program Coordinator to develop certification requirements to competently assess infants' hearing status.
2.2.2a Identify and recruit (approx. 20) audiologists statewide in public, private and state programs who express a strong desire to be involved in the development and implementation of protocols for diagnostic audiological assessment of infants
Twenty qualified audiologist will accept positions on the Audiology Committee.
2.2.2b Conduct meetings for Audiology Committee to develop certification requirements to assess infants' hearing status, including equipment requirement, educational credentials, training, and experience.
70% of committee members present at meetings
Minutes from all committee meetings circulated
Certification requirements to competently assess infants' hearing status developed within six months
Protocols for Diagnostic Audiologists assessing infants referred from hospitals screening
Goal 3: To increase the collaboration statewide with families, hospitals, medical homes, diagnosticians, and early interventionists through outreach, educational materials, and presentations so initiation of services is timely, family centered, culturally competent and easily located and accessible.
3.1 Work collaboratively to identify areas of improvement needed to create a seamless flow from hospitals referral to early interventionist.
3.1.1 Establish an Advisory Board to strengthen collaboration between parties interested in UNHS, and an advocacy office to act on behalf of parents and families to ensure that children with special circumstances receive service coordination.
3.1.1a Poll statewide resources for deaf and hard of hearing to recruit Advisory Board members that accurately represent the resources available.
Advisory Board meeting within 3 months of funding and every 6 months thereafter.
3.1.1b Conduct Advisory Board meetings to discuss the development of protocols that refine policy and procedures for case finding, referral, coordination, and communications.
Minutes of Advisory Board meetings published regularly.
Policies and procedures published
3.1.1c The Advisory Board will develop a universal referral form to guide patient services among collaborating agencies and develop regional resources directories.
Referral form is in use within six months
Regional resources directory published within six months
3.1.1d Develop an advocacy office within the KY Commission to assist in the delivery of required services for children who are not eligible for services from the KY Commission.
KY Commission advocacy office established within six months
KY Commission-ineligible children receive required services within an equivalent timeframe to KY Commission patients
3.1.2 Work with families to identify barriers existing in seamless flow of services from hospital screen through warranted intervention
3.1.2a Offer communication opportunities to comment on hearing related services
Web-based forum established within six months
Toll-free telephone number for family concerns established within six months
3.1.2b Survey families receiving services through the UNHS to identify areas of concern.
50% of all families return completed surveys.
3.1.2c Work with existing hospitals or existing resources to make sure families are given a regional resource directory
100% of birthing hospitals will use regional resource directories.
3.2 Educate medical homes and medical training programs about UNHS and appropriate follow-up
3.2.1 To act as resource center for pediatricians with deaf or hard of hearing children in their caseloads and provide training on the importance of hearing screening and appropriate follow-up services and how and where to refer.
3.2.1a Collaborate with the Kentucky Pediatric Society to promote support of UNHS
The Kentucky Pediatric Society participate on the Advisory Board
3.2.1b Track referral rates for Kentucky pediatricians
A statistical baseline of average pediatrician referrals will be developed
3.2.1c Send letters and brochures to pediatricians explaining about hearing loss and early intervention and offering support services.
Information will be mailed to pediatricians
3.2.2 Work with physician training programs in Kentucky to ensure that doctors entering communities in Kentucky have up to date training about infant hearing.
3.2.2a Enlist the support of medical training programs to ensure the curriculum includes training about hearing screening and management of pediatric hearing loss.
Review curriculum of medical programs and make recommendations about content regarding newborn hearing screening and follow-up resources
3.2.2b Develop presentations and provide training to medical students.
Copies of presentations and attendance at trainings and student/faculty evaluations
Goal 4: To improve the data management and follow-up tracking of the Universal Program through improvements in technology and expansion of existing Hearing High Risk Registry systems.
4.1 Expand existing HHRR database to adapt to the Kiss Project.
4.1.1 Implement database expansion program.
4.1.1a Update the existing HHRR database to include all children born in Kentucky and more parental information
Database expansion complete within three months
4.1.1b Integrate the Kiss database with the general KY Commission patient database so there is not a service delay relating to record transfer
Developed a usable patient database that has the ability to grow with the expansion of the Universal program, provides information on trends in newborn screening and identification of infants at risk
4.1.2 Implement tracking forms that are accurate and easy to use.
4.1.2a Develop forms that are easy to read and understand with input from Model Hospitals
Data reporting forms from hospitals are complete for 75% of forms on first submission
4.1.2b Distribute forms to all 65 birthing hospitals across the state
4.1.3 Develop Advocacy center tracking database
4.1.3a Design a subset of the Universal database that allows Kiss personnel to monitor referrals and follow-up care.
Database is operational within 3 months
4.1.3b Develop means to track data and information to enter into subset
4.2 Implement training procedures for data reporting and database navigation
4.2.1 Train hospital staff about appropriate implementation and use of data management programs
4.2.1a Develop a handbook detailing appropriately completed forms and instruction about how to electronically process data
Copy of handbook
4.2.1b Identify agencies, providers, and hospitals that have received and are using the handbook
Handbook distributed to 100% of birthing hospitals and usage monitored
4.2.2 Train KY Commission audiologists about navigation of database and entering appropriate data
4.2.2a Require KY Commission audiologists to complete 3 CEU's pertaining to data management and electronic transfer of information
Audiologists submit completed CEU forms annually
4.2.2b Offer data management CEU at the KY Commission
Program and participant attendance and evaluations
4.2.3 Compile data about infant hearing loss in Kentucky including incidence, causative factors, diagnosis and intervention time
4.2.3a Collaborate with vital statistics to obtain the demographic data necessary to compile Kentucky specific statistics
Compare number of births reported to the Universal program to the numbers collected by Vital Statistics
4.2.3b Compile annual report detailing aggregate data accumulated in the Kiss database
Annual report published
4.2.4 Develop program that allows hospitals to electronically send and receive information about the Kiss Project
4.2.4a Use electronic programming to develop an Internet based program for transmitting and receiving documents related to the Kiss database
Internet data transfer format established within 1 year
Address of internet based program
4.2.4b Hospitals use developed program to transmit information electronically
List of hospitals using developed program
I. REQUIRED RESOURCES
Staff time for the Project Director, Program Coordinator, and consultants will be funded by the KY Commission. Kiss Project funds will be used to contract with experts to provide in-service workshops, purchase Diagnostic Distortion Product Otoacoustic Emissions units, and support of training meetings statewide. Project funds will be used to purchase and/or develop videotapes and workbooks and print informational brochures and pamphlets for project activities as well as general office supplies. Postage, telephone, and fax services will be paid through the grant when extensive, every day correspondence will be supported by the KY Commission. Funding will be needed for travel statewide, to the MCHB for consultation, to other stales for consultation, and to regional and national meetings to present posters and sessions about the project and network with UNHS program specialists from other states. Grant funds will support consultation visits of national experts and continuing education for KY Commission audiologists.
Grant funds will be used only for the purposes specified in the application and necessary fiscal control and accounting procedures will be established. The KY Commission will administer the grant, they have provided extensive grants management support to the CHOICES Project since 1990 and more recently the KY TEACH Project.
The KY Commission will provide the managed care coordination and diagnostic audiology services for referred infants. Treatment services will also be provided to children identified with hearing loss and amplification devices will be purchased for eligible children. The Kentucky Medicaid managed care organizations will provide funding for amplification of jointly eligible children. Early Intervention will provide assessment and amplification for birth to 3 if families are not eligible for the above services.
Referrals for early intervention services will be made by collaborating agencies and initiation of services will be provided by the state Early Intervention Program, the KY Commission, and other public and private agencies. Data will be managed and infants will be tracked by building upon existing systems within the HHRR.
J. PROJECT METHODOLOGY
The chart on pages 19-25 details the planned activities dial will be implemented to meet the goals and objectives of the Kiss Project. In summary, the methods to be used to implement the Kiss Project are as follows:
K. PLAN FOR EVALUATION
The Kiss Project focuses on systems changes that will increase the number of infants receiving screening and improvement in knowledge and assessment capacity of hospital screening personnel, diagnostic audiology service providers and early interventionists for the 0-6 month population in Kentucky. It also focuses broadly on the improved collaboration efforts of existing providers to streamline services to enable families to navigate Hie system easily and without additional stressors. Three levels of evaluations are planned as follows:
If the Kiss Project is successful in reducing the age of identification through early intervention for even a small number of infants, their individual benefits from reaching their optimal potential will far exceed the costs of grant activities.
