Arkansas

MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT

Project Title: EHDI System in Arkansas
Project Number: CFDA #93.251
Project Director: Ron Stark Phone: 501-661-2251
Organization Name: Arkansas DeRartment of Health
Address: 4815 W. Markham Slot 20: Little Rock, AR 72205
Contact: Ron Stark Phone: 501-661-2251
Fax: 501-661-2251 Email: RStark@healthyarkansas.com
Project Period: 4 years From: 9/01/01 to 3/30/05

PROJECT ABSTRACT

The Infant Hearing Program is part of Child and Adolescent Health, which is housed in the Maternal and Child Health section of Statewide Services Group of the Arkansas Department of Health. This project is entitled "EHDI System in Arkansas", with Ron Stark, Interim Team Leader of the Maternal and Child Health section as project director. The Infant Hearing Program has 18 years experience with newborn hearing screening and has overseen the expansion of the screening program into most birthing hospitals in the state, as well as to pediatric audiologists and early intervention service providers.

The purposes of the proposed project are to link existing components of the Early Hearing Detection and Intervention (EHDI)-related activities within the state; to identify obstacles to that linkage; devise and put into practice procedures and programs to address those areas of need already identified; and assess progress with appropriate evaluative techniques.

Arkansas faces several challenges to developing and implementing EHDI: 1) a screening infrastructure is in place, but inadequacies remain, e.g., some hospitals have a refer rate of >15%; 2) a shortage of audiological services income regions of the state, and a limited number of audiologists statewide experienced in infant assessment; 3) limited knowledge about hearing loss and training on cultural competence by service providers in the early intervention programs; 4) un-coordinated system of parent-to-parent support network; and 5) low knowledge levels about hearing loss in general and in children in particular.

The overall goal of this proposal is to bring Arkansas' EHDI program in line with the Healthy People 2010 document and can be divided into. Specifically, these goals are: 1) all infants are screened for hearing loss by one month of age; 2) babies referred from the screening complete a diagnostic audiologic evaluation by 3 months; 3) those identified with hearing loss receive appropriate audiologic, educational, and medical management by 6 months; 4) increase understanding of the importance of hearing in early childhood. This information will be disseminated to the relevant stakeholders in a timely and accessible manner needed for program monitoring and quality assurance.

Specific objectives designed to achieve these goals include: reduce the initial refer rate; design an information-sharing system among state agencies and providers; increase the number of infants receiving appropriate assessment; identify barriers and facilitators to linking infants with hearing loss to a medical home; collaborate with the sole audiology training program to offer additional infant assessment opportunities; provide 90% of families with access to a family support network; and increase public and professional awareness and understanding of hearing and hearing loss in children.

The EHDI program in Arkansas proposes to use a variety of activities to accomplish these objectives. The IHP plans to contract with a social worker to design and implement a procedure for infant follow-up after the initial screen; contract with an individual to coordinate the parent-to-parent programs; employ a combination of surveys of different constituencies to assess parent satisfaction, knowledge of hearing loss in the 0-3 population, level of cultural competence, what family-to-family networks exist, etc. Data from these surveys will be used to identify training topics, followed by offering training opportunities to those constituents. For example, surveying early intervention providers about the possible effects of hearing loss in the 0-3 population and offering training sessions to those professionals on that topic. The Universal Newborn Hearing Screening, Tracking, and Intervention Advisory Board will become more representative with an invitation to variety of additional stakeholders to participate on a `work group' simultaneously with the Advisory Board, until the legislation can be amended for their inclusion on the Board. The IHP will tabulate statistics and make those available to appropriate stakeholders (e.g., hospitals) to assist in program maintenance and keeping referral rates as low as possible.

The ultimate evaluation of the Arkansas EHDI program will be the number of infants with congenital hearing loss who are identified and enrolled in culturally appropriate intervention by six months of age. Because that long-range goal will not be measurable immediately, intermediate quantifiable outcome measures will be used whenever possible, supplemented by process-oriented measures when necessary. Quantified evaluation will consist of, for example, the number of children receiving an initial screen by one month of age and specificity and sensitivity rates determined from the initial screen and diagnostic information. Process oriented evaluation must occur with activities such as collaborative meetings and the production of documents. Because intervention is a critical component, the EHDI program will determine how many families have access to a family support network, and document at what age infants with hearing loss begin receiving services. Training sessions/course offerings will be evaluated in terms of attendance, pre- and post-tests of participants' knowledge, and course evaluations. The Arkansas Department of Health recognizes the need for quantifiable outcome measures in order to accurately assess program effectiveness and every effort will be made to realize such measures for as many activities as is practicable.

This project is designed to ensure that Arkansas children with congenital or early hearing loss are identified with appropriate techniques and receive family-friendly, culturally competent intervention in a timely manner. A universal screening program has been initiated and must be improved; surveillance, diagnosis, intervention, and family-support efforts need enhanced state wide coordination. Finally, many Arkansas residents need education about the importance of hearing in young children and the possible consequences of undetected and untreated hearing loss. The activities discussed in this proposal rely on extensive collaboration between and among many agencies (public and private), providers, advocacy groups, and individuals to address these needs in several ways, including: training of students and professionals; documenting and responding to parents' concerns; establishing "best practices" for audiologists and early interventionists. Rigorous evaluation of each activity is planned and the information obtained from that evaluation will be important to identify changes that should be made to the program as it develops to ensure the best service possible for Arkansas children with hearing loss and their families.

Key Words: newborn hearing screening; hearing loss; early intervention; infant audiologic assessment; medical home; cultural competency; access to healthcare; linguistically competent; relevant stakeholders

PROJECT NARRATIVE

1. Purpose of the Project

The purpose of the proposed project is to strengthen the linkage between existing components of the Arkansas Early Hearing Detection and Intervention program to ensure that: 1) all infants are screened for hearing loss within the first month of life; 2) those who refer from screening receive audiologic evaluation by 3 months of age; and 3) those with hearing loss begin receiving intervention services by no later than 6 months of age. The proposed project will focus on carrying out procedures to improve follow-up of infants through the system while also improving individual system components. Arkansas is committed to providing children with hearing loss the tools they need for success in life.

Challenges

Currently, 97% of births occur in facilities with a Universal Newborn Hearing Screening (UNHS) program. Screening programs, audiologic evaluation, and early intervention (EI) are in place, but as yet there is no cohesive system linking these services. Confidentiality and information-sharing issues must be resolved to permit the Infant Hearing Program (UP) to follow each child through screening, diagnosis, and intervention, including the ability to obtain intervention outcome measures. Arkansas must therefore assess information-sharing among relevant stakeholders and implement a process to assure effective follow-up.

In addition, each system component (screening, evaluation, early intervention) can benefit from internal improvements. UNHS programs operate under promulgated rules and regulations (App. A), but some referral rates remain above the minimally acceptable level (10%.) Based on in-house IHP information, it is estimated that 65-75% of babies referred from the inpatient screen do not return. With no central EHDI information depository, tracking individual children is difficult. Provision of adequate diagnostic services for infants must be addressed. There are few diagnostic centers for children under one year, and most audiologists have limited training and experience testing this population. Reporting of diagnostic results to the IHP has begun but needs expansion. Early intervention services are currently available to children identified with hearing loss; however, many EI providers need training on working with these children and their families. Family-to-family support networks must be identified, linked, and expanded. Additionally, general knowledge levels of the effects of hearing loss in children must be raised in both the lay and professional populations. Additional information on Challenges can be found in Section 6. Needs Assessment.

Rationale and Evidence Supporting the Proposed Intervention

Arkansas is now screening about 70% of infants before hospital discharge. In 2000, 9.7% of the 26,213 screened received a "refer" outcome. The IHP has confirmed rescreen information on only 30% of those children, indicating the need for better tracking and surveillance of infants by the EHDI system. According to 1999 MCH Block grant data, about 80% of children with special health care needs have at least a primary care physician (PCP); how many children with hearing loss have a PCP is not known. Input into the EHDI process is inadequate due to limited representation of stakeholders (five) on the UNHS Advisory Board. Several independent parent-to-parent support networks exist but parent referral to these programs is not assured. Most planned activities of this project rely on collaborative efforts (see Section 8. Goals and Objectives.) Information sharing among state agencies for children in the EHDI system is not occurring at present. Plans to implement data-sharing and a viable follow-up program will help ensure families navigate successfully through EHDI.

Describe the Anticipated Benefit in Terms of Purpose and Goals Benefits of the Arkansas EHDI project will be that each child with significant hearing loss receives early identification and family-friendly, culturally appropriate early intervention. Such early intervention should result in children who are able to succeed academically and vocationally. 2. Organizational Experience and Capacity

The lead agency for the Arkansas Early Hearing Detection and Intervention project will be the Arkansas Department of Health (ADH). ADH maintains several programs dedicated to preventive health care for women and infants. The Newborn Screening Program (metabolic screening) has been in existence for more than 25 years and tests all neonates born in Arkansas for phenylketonuria (PKU), congenital hypothyroidism, galactosemia, and hemoglobinopathies. ADH personnel provide follow-up of neonates with abnormal screens, and for those with a confirmed diagnosis, long-term follow-up is provided until the child reaches 5 years of age. Additionally, health education is available for parents of children identified with sickle cell trait or sickle cell disease. During 1999, > 99.5% of all newborns received at least one screen; all children identified with PKU and congenital hypothyroidism received treatment, 18 of 19 with sickle cell disease received treatment, and there were no confirmed cases of galactosemia.

The Campaign for Healthier Babies is eight years old, targets all pregnant women, and promotes early prenatal care. (ADH health units provide prenatal care for 25-30% of Arkansas pregnant women.) About 80% of the --36,000 pregnant women in Arkansas are estimated to view the campaign television ads. The program offers the free Happy Birthday Baby Book, which contains information about pregnancy and child care and development, as well as merchandise coupons. The book is distributed by request only, obtainable through a toll-free number or a postage paid card. In fiscal years 1997-1999 over 20,000 books were distributed each year, about 56% of annual births. This successful campaign is important for the health of Arkansas children.

The Prenatal & Early Childhood Nurse Home Visiting Program (PECNHV) was established by 1999 legislation. Registered nurses make home visits to first time pregnant teens between the ages of 15 and 19. In 1998, this age group of pregnant women gave birth to more than 15% of the children born in Arkansas. PECNHV has begun in 17 counties with 16 nurses and five program specialists. Areas emphasized in the program range from prenatal care and family planning after delivery to immunization guidelines and schedules for infants and babies.

The Infant Hearing Program (IHP), in existence since 1982, resides under the Maternal and Child Health group within ADH (See Section 3. Administration Structure for further details.) The program was strengthened in 1993 with a mandated high-risk "paper screen" for every birth in the state. The paper screen and accompanying database have been operational since 1995, and IHP personnel were instrumental in helping about half the birth hospitals in the state implement voluntary hearing screening programs between 1996 and 1999. The growth of before-discharge infant hearing screening during this time was rapid; in 1996, 1535 infants were screened; in 1999, 25,977 infants were screened. Act 1559 of 1999 put into place a Universal Newborn Hearing Screening (UNHS) law (App. A.) The UNHS legislation established an Advisory Board (App. B) and mandated that each facility with more than 50 births annually provide or arrange for bilateral physiologic hearing screening.

The EHDI components (screening, evaluation, EI) are under the purview of various agencies/entities in Arkansas. As a result, several state programs in addition to the IHP will play key roles for the success of the Arkansas EHDI system. The project coordinators, along with the collaborating organizations, individuals, and consultants listed below, have extensive experience that makes them exceptionally qualified to guide the EHDI project:

as the project coordinator. Ron has almost 20 years experience in implementing health and social services programs. In his current role at the Health Department he provides leadership for the Title V Maternal and Child Health and Title X Family Planning programs. While at the Department of Human Services, Ron created a community-based childcare program in Miller County, Arkansas with funding from The Robert Wood Johnson Foundation, which is still in existence with local dollars.

IHP Program Coordinator. Laura Smith-Olinde, Ph.D., CCC-Audiology has served as the IHP coordinator since December, 1999. Laura has overseen the expansion of the infant hearing screening program into most of the birthing facilities in the state. She also helped draft Act 1559 rules and regulations, 0-12 month audiologic assessment guidelines, and El service provision guidelines.

Tracking and Surveillance Consultant. Social Worker to be contracted to design and implement active follow-up procedures from within the IHP. Follow-up will consist of phone calls, personal contact (when possible), mail (as a final resort), arranging audiology appointments, determining insurance needs, providing help in obtaining PCP referrals, arranging transportation for eligible families, and contacting families after missed appointments.

Parent-to-Parent Network Consultant. To be contracted. This person will coordinate the existing parent-to-parent networks in the state to ensure each family of a child with hearing loss receives the opportunity for parent-to-parent support and to avoid duplication of effort.

Cultural Competence Consultants. Betholyn Gentry, Ph.D. and Priscilla Davis, Ph.D., are professors at the University of Arkansas at Little Rock. Drs. Gentry and Davis have expertise in the

area of multiculturalism and will be contracted to write a cultural diversity curriculum for use with individuals working with children aged 0-3 years and their families.

Arkansas Children's Hospital (ACH). Audiology and Speech Pathology Department. Patti Martin, M.S., CCC-A, is involved in infant hearing screening on the local, state, and national levels. She is currently a technical advisor for Region VI with the National Center for Hearing Assessment and Management. ACH is the primary pediatric audiologic diagnostic center in the state.

Arkansas' IDEA Part C (First Connections). Sherrill Archer, M.S., CCC-SLP has been the director of First Connections in Arkansas since 1989. Working collaboratively with several groups, Sherrill has recently undertaken rewriting the service provision guidelines for the 0-3 population with hearing loss. As Director of First Connections, Sherrill can insure that infants identified with hearing loss receive intervention services and/or amplification devices as needed. Sherrill also serves as the liaison between First Connections and the Interagency Coordinating Council.

Arkansas School for the Deaf Early Intervention-Early Childhood (ASD-EI). Linda Grumpier, M.S., CCC-SLP, is the statewide coordinator of services for children with hearing loss aged 0-5 years. Linda has 20 years experience serving children with hearing loss and their families. The ASD-EI program primarily trains parents, providing them with the information needed to improve their children's communication. The program also has parent advisors, professionals who work one on one with families to help them make decisions. Linda serves on the First Connections Interagency Coordinating Council Steering Committee.

Medical Home Consultant. Gil Buchanan, M.D. Dr. Buchanan is the Medical Director for Children's Medical Services, the Arkansas Title V Program for Child with Special Health Care Needs. He also serves on the American Academy of Pediatrics advisory committee on developing the Medical Home. He is a member of the Medicaid TEFRA committee. This group makes decisions regarding TEFRA Medicaid eligibility. TEFRA is a category of Medicaid that provides coverage to SSI diagnostically eligible but financially ineligible children in their homes rather than in continuing institutional care to maintain SS1/Medicaid coverage. Dr. Buchanan serves as the CMS representative on the Interagency Coordinating Council for First Connections.

Parent Advocacy Consultant. Nan Ellen East. Nan Ellen is the Executive Director of the Disability Rights Center and has an adult child who suffered meningitis with a sequela of hearing loss. Nan Ellen is active in the Arkansas Association for Hearing Impaired Children, the Arkansas A.G. Bell chapter. Nan Ellen has worked in the disability rights arena for >25 years and is a past president of the A.G. Bell Association.

Children's Medical Services (CMS.). Nancy Church, RN, is the Program Director for CMS, the Arkansas Title V program for children with special health care needs. Nancy has worked for CMS since 1980 in several capacities, which was preceded by two years in the neonatal intensive care unit of Baptist Hospital in Little Rock. CMS provides care coordination for these children through 25 local offices that each house a nurse and/or a social worker. Local staffs make decisions autonomously, based on community needs. CMS also has an active Parent Advisory Council that meets quarterly, and CMS solicits input from families through annual surveys that assess clients' needs and measure their satisfaction with the program.

3. Administration Structure

The Infant Hearing Program is part of the Child and Adolescent Health Team, which is part of the Maternal and Child Health Group under the Statewide Services Group (App. C, interim organizational charts.) The Arkansas Department of Health is currently undergoing a restructuring process, with a view to instituting team management and streamlining program decision-making procedures. The new model should allow for greater program flexibility and faster response for changes.

In 1997, numerous state agencies recognized the need to identify and formalize the responsibilities and activities of each agency with respect to infant/toddler services. The resulting document (App. D) is a good foundation for a statewide EHDI system. A chart of the relationships among the various agencies and programs involved in the EHDI system is on the following page.

4. Available Resources

The )HP is a participant in an EHDI cooperative agreement with the Centers for Disease Control and Prevention (CDC). The single largest initiative from the CDC funding is a new tracking database with electronic data submission capability for hospitals. Permission to obtain the software has been granted, and a pilot project between the IHP and several hospitals has been undertaken. Training on the software will occur in the next few weeks and electronic submission of data will begin shortly after that time. The pilot project is designed to identify problems that could occur between hospitals and the IHP and work out solutions before the software is distributed to all birth hospitals. Another initiative from the CDC funding is to hire a "Management Project Analyst," an individual to oversee the change in database platforms and engage in program evaluation activities. This position is expected to be filled in July 2001.

Arkansas will continue to take advantage of the National Center for Hearing Assessment and Management (NCHAM) MCHB-funded technical assistance project. The IHP coordinator attended a "Training the Trainers" workshop in October, 2000 and has disseminated information to hospital personnel as appropriate; an NCHAM regional audiologist (Karen Ditty, M.S., CCC-A) presented to Arkansas hospital personnel in January 2001. Patti Martin of ACH is also an NCHAM regional audiologist. As one of 12 the NCHAM-selected Network members, Patti will have direct access to new EHDI information and materials as they become available as she provides assistance to MCHB Region VI.

Statewide, several programs will function together to form and support Arkansas' EHDI system. For example, IHP provides technical assistance to hospitals and will, with MCHB funds, begin an active follow-up program for children requiring rescreening or evaluation, Medical Home linkage, and/or early intervention services. ACH, ASD-EI, and the Arkansas Association for Hearing-Impaired Children each have parent-to-parent networks in place; these programs (and any others identified) will, with MCHB funds, be coordinated by an individual housed at the ASD-EI offices. Members of the First Connections staff will offer training to audiologists regarding referral to EI, the process of El and participation in Individual Family Service Planning meetings. Regionally, the Arkansas IHP coordinator has established working relationships with EHDI staff in Mississippi, Missouri, and Oklahoma. It is hoped that a plan can be devised to appropriately handle children who are residents of one state but are born in a neighboring state.

Finally, in addition to the individuals cited in Section 2. Organizational Experience, there are a total of 1.5 FTE ASHA-certified master's level audiologists in the west and east regions of the state. There are two full-time IHP support staff, and access to an administrative secretary to work with the UNHS Advisory Board and perform short-term projects as needed. The current office space and computer equipment adequately meets IHI' staff needs. A limited amount of Title V funds are available for maintenance and operation of the IHP. (See Section 7. Collaboration and Coordination for more detail on collaborating partners that will also serve as resources to the project.)

5. Identification of the Target Populations and Service Availability

Demographics and Target Populations

The target population of the Arkansas EHDI system is all newborns in the state of Arkansas. In 1998 (most recent data available) there was a total of 36,831 live births, according to the Office of Vital Statistics. Of those, an estimated 108 are born with significant hearing loss. Of the 36,831 births, 7,968 (21.5%) were African-American, 28,029 (76.2%) were Caucasian, and 834 (2.3%) were "other." Arkansas is experiencing the 4`" fastest growth of its Hispanic population in the nation, according to the 2000 U.S. census. It is probable, therefore, that in 1999-2001 the ratios of births to various ethnicities changed, necessitating careful assessment of "cultural competence" in Arkansas. In addition to newborns, other groups targeted for and expected to benefit from this proposal are expectant parents, new parents, organizations offering support to parents of children with hearing loss, physicians, nurses (those providing screening and those in physician offices tracking infants), Part C service providers, speech-language pathologists, and audiologists.

Service availability

Fifty-six of the 58 birthing facilities in the state are mandated to provide before discharge in-hospital hearing screening. Of those 56, 54 have LTNHS programs in place and the remaining two are in the process of purchasing equipment. The final two facilities complete a high-risk questionnaire on each birth, placing those infants in the IHP follow-up system. There are no military or Indian Health service hospitals in Arkansas. Of the 53 LJNHS screening programs, at least 18 also provide outpatient screening. This model of outpatient rescreens is being pursued with all hospitals in order to maximize efficient use of resources and not overload the audiologic evaluation system in the state. Fourteen hospitals (7 that provide outpatient rescreen and 7 that do not) make audiology appointments for families. Outpatient screen-, ing services are also available at 32 audiology facilities across the state and two hospitals in Memphis, Tennessee (App. E.)

Audiologically assessing the pediatric population requires specialized equipment and expertise. The IHP is surveying audiologists to develop a list of providers for infant diagnostic assessment. It is anticipated that the providers testing infants aged 0-6 months who use the equipment and techniques specified in the assessment guidelines (App. F) will be placed in one category, while those testing infants from 6 months on will be placed in a second category. It is felt that presenting the information in this way will be the most beneficial for parents.

ASD-El is the main program providing services to children 0-5 with hearing loss and their families. ASD-EI employs the Ski Hi home programming model, emphasizing family support in natural environments. First Connections is the primary state agency providing services to children with special needs in the 0-3 age range and coordinates appropriate services for this group. Additionally, families may choose to pursue services apart from either of these programs.

Cultural competence is a critical element for a successful EHDI system. First Connections has purchased test materials in Spanish and will accept requests for tests in other languages. These tests are kept in the Little Rock office and are loaned out to providers as needed. First Connections and IDEA, Part B (Department of Education) jointly publish several informational pieces in English, Spanish, Vietnamese, and Laotian. (Needs in the area of cultural competence are presented in Section 6. Needs Assessment.)

Primary Care Providers are accessible in most regions of the state and can, with the necessary training, create a Medical Home for children and families. According to FY 1999 MCH Title V Block Grant data, 81.8% of children with special health care needs in Arkansas have at least a primary care provider. The IHP maintains a database of pediatricians and primary care physicians (over 550 offices) and regularly contacts these offices with information about missed or referral inpatient screenings, or children who passed the initial hearing screen but have risk indicators.

6. Needs Assessment

Needs assessment has been undertaken with surveys and interviews of hospital personnel, parents, physicians, El providers, and audiologists. Data collected by the IHP is included where appropriate. In addition to the needs of each component of EHDI, there is an overarching need for an effective tracking and surveillance system to allow each child to be followed from screening through EI service provision. The two other crucial needs for Arkansas are a systematized parent-to-parent network, and training all individuals who work with the 0-3 population to work with children with hearing loss and their families and to do so in a culturally competent manner.

A. Screening. Hospitals establish their own hearing screening protocol within the purview of the rules and regulations of Act 1559 (App. A); the IHP provides help as requested. The 54 hospitals with universal screening in place represent approximately 98% of Arkansas' annual births, with an anticipated 99.5% of births covered with full implementation. Hospitals may use either [automated] auditory brainstem response (AABR) or [automated] otoacoustic emissions (OAE) technologies. Of the 54 hospitals with programs in place, 21 use AABR only, 28 use OAE only, and five are using a two-stage screening process of OAE followed by AABR. Six of the 56 birth facilities covered by the law are contracted with audiologists; the remainder have incorporated hearing screening into the routine of the nursery and/or obstetric nurses and technical staff. Parents are required to sign the At-Risk Screening Questionnaire for Infant Nearing Loss (App. G) giving or refusing permission for the hospital to obtain the risk information, perform the physiologic screen, and send that information to the IHP, the child's PCP, and other service providers. Hospitals are required to send information about hearing screening on each infant to the IHP by the 15th of the month following the screening. Audiologists and physician's offices may, but are not required to, offer initial hearing screening or rescreening for infants. Act 1559 mandates that any provider must inform the IHP of the hearing screening results by the 15th day of the month following the screening.

Screening Strengths Summary

• Rules and regulations have established basic protocols for hospital programs.
• High-risk questionnaire captures risk indicators for late-onset/progressive hearing loss and is a 4-part form with copies for the hospital, IHP, child's physician, and parents.
• An Advisory Board is in place.

Screening Needs Summary

• Decrease the referral rate on initial screens.
• Decrease the rescreen demand on the audiology system.
• Implement a better data management systems for hospitals (and the IHP).
• Expand the Advisory Board to include more stakeholders.
• Provide appropriate and timely information to parents and the Medical Home to help assure children are seen by primary care providers using the Medical Home model.

Screening Referral Rate: Existing data indicates that the (provisional) number of infants born in Arkansas during calendar year 2000 was 37,019, with 26,213 (71%) receiving an initial physiologic hearing screen before hospital discharge. An additional 300 or so were screened within one month. Of those screened in 2000, 2545 (9.7%) failed the initial screen. The IHP has documentation that at least 746 (29.3%) received a follow-up screen after the initial referral, which indicates that significant numbers of children are being lost between the initial screen and subsequent testing. Eighteen of the 53 hospitals with UNHS programs offer rescreens, according to returned surveys (still in progress.) Hospital-based rescreens are important because audiologists are not available in all regions of the state. A rescreen performed by nurses is not reimbursable in Arkansas, a challenge to be dealt with.

Tracking and Data Management: Most hospitals are using paper and pencil to track newborns in the UNHS process and many rely on the IHP to supply their pass/refer rates. As part of the CDC cooperative agreement, the IHP is in the process of acquiring the Hi*Track Patient and Information management software for distribution to the birthing hospitals and as the primary database for the state. This change in data management systems will allow hospitals to track their own refer rates, generate tickler lists of infants needing follow-up, more easily gather quality assurance measures, and provide data to the state electronically. The state-level Hi*Track database will further enable the state to engage in more effective follow-up strategies to track children from the initial screen through subsequent testing.

Advisory Board: The current composition of the Advisory Board is 1 parent of a child with hearing loss, 1 physician, 1 Deaf/Hard of Hearing consumer, 1 speech-language pathologist, and 3 audiologists (App. B.) Legislated expansion will be sought; however, a non-voting working group that will meet simultaneously with the Advisory Board is being pursued. Every effort will be made to ensure that Advisory Board and working group members reflect the ethnic diversity of Arkansas. Groups that will be asked to participate are:

• American Academy of Pediatrics-Arkansas chapter
• Arkansas Academy of Family Physicians.
• Arkansas Association for Hearing Impaired Children
• Arkansas Department of Education
• Arkansas Foundation for Medical Care
• Arkansas Hospital Association
• Arkansas Medicaid
• Arkansas Nurses Association
• Arkansas School for the Deaf-EI/Early Childhood Program
• Children's Medical Services
• First Connections-IDEA, Part C
• Minority Disability Advocacy Network
• Univ. of Arkansas at Little Rock-Program in Deaf Education
• Univ. of Arkansas at Little Rock/University of Arkansas for Medical SciencesDepartment of Audiology and Speech Pathology.

Provision of appropriate and timely information to families and physicians: The IHP has designed a parent brochure (App. H), currently being translated into Spanish, that is distributed to parents in the hospital. A concern, however, is determining who at the hospitals is informing parents of screening results and in what manner that is occurring. Suggestions for parent counseling (App. I) were disseminated to UNHS contact persons and are also discussed during hospital inservices. The issue of providing information in a culturally competent way needs to be addressed with hospital personnel. The Hi*Track Patient and Information Management system will give screening programs the ability to automatically print letters to parents in Spanish or English, as appropriate, reporting infant outcomes. At this time, copies of the high-risk questionnaire (currently being translated into Spanish) are also given to the parents and the child's physician. Interviews with hospital personnel indicate the addition of the physician sheet has decreased the time to inform physicians of screening results; by how much is not known. An additional concern is that physician contact information provided by hospitals to the State is sometimes incorrect. In those cases, the physicians' offices are requested to inform IHP of the error so that the family can be tracked and contacted by State program personnel.

B. Diagnostic Evaluation. The IHP is unable to state how many infants are receiving audiologic evaluation by age three months. Use of a diagnostic reporting form (App. J) has been implemented, and work is progressing to incorporate the form into each audiologist's office procedures. To adequately address the pending Health Insurance Portability and Accessibility Act (HIPAA) regulations, there are plans to add a release of information section at the bottom of the page, which will give the IHP parental consent to share information with, at least, First Connections, ASD-EI, and the child's Medical Home.

Evaluation Strengths Summary

• Pediatric guidelines are in draft stage and have been disseminated to audiologists for comment.
• A resource list of audiology facilities testing infants (consistent with the guidelines) will be a quick reference list for parents with children needing audiologic assessment; this list can easily be updated as the number of clinics increases.
• Arkansas Children's Hospital, with several experienced pediatric audiologists, provides excellent pediatric diagnostic services.
• Funding is available for evaluation and amplification through a variety of sources.

Evaluation Needs Summary

• Improve the skills of practicing audiologists and graduate students in pediatric evaluation, family counseling, and cultural competence.
• Provide evaluation services in all regions of the state.
• Document evaluation and amplification results in the EHDI tracking system.

Skill Building for Audiologists: A two-day training session is in the planning stages for the fall of 2001 (see Section 8. Goals and Objectives.) The IHP is working to bring in one audiologist nationally recognized for diagnostic work and a second noted for counseling techniques. Manufacturers have been contacted and have agreed to bring equipment, and infants/families will be recruited for hands-on practice by attendees.

Statewide Audiologic Services: According to the pediatric audiology guidelines, diagnostic services for infants 0-12 months should include click and tone burst ABR, OAE, and the ability to confirm middle ear status. As the planned skill-building for audiologists occurs, the number of diagnostic centers in diverse regions of the state will increase.

Documenting Outcomes: As use of the IHP diagnostic reporting form (App. J) becomes routine, these data will be available to the IHP. At least one diagnostic center (ACH) uses the Hi*Track software, allowing electronic and timely submission of the diagnostic and amplification information to the IHP.

C. Early Intervention. As of May 2000, the number of infants/children with hearing loss served in the 0-5 population by ASD-El was 144. First Connections has only recently begun documenting children with hearing loss in a category separate from children with other sensory deficits (i.e., vision impairment), and it is not yet possible to obtain a count of children with hearing loss served by First Connections. Therefore the lHP is unable to document the frequency and appropriateness of referrals. We believe that the number of known enrollment represents an undercount of young children with hearing loss in Arkansas who should be receiving services, given a conservative literature-based estimate of 1/1000 children with significant congenital hearing loss. Without a complete and accurate reporting system, the IHP is seriously handicapped in these efforts.

There is not a coordinated statewide family-to-family support system in Arkansas. However, the Arkansas Association for Hearing Impaired Children (AAHIC) has established a support system that addresses several needs: contact with another family, if desired; explanation of the various communication systems available for people with hearing loss; explanation of families' rights; search for necessary funding for amplification, etc. Individual clinics (e.g., ACH) and ASD-EI also routinely establish family-to-family links, or may refer some families to the AAHIC. Early Intervention Strengths Summary

• Arkansas has First Connections and the ASD-EI program designed to work with children with hearing loss; staff from these programs collaborate to ensure no child with hearing loss is unserved
• There are several parent-to-parent support networks already in existence

Early Intervention Needs Summary

• Systematize parent-to-parent support networks
• Train EI service providers to work with children with hearing loss and their families.
• Train El service providers and coordinators on issues of cultural competence.

Parent-to-Parent Support: The need is to offer parent-to-parent support to every family of a child with hearing loss without duplication of effort, by centrally coordinating referrals for parents.

Hearing Loss Training: Because until recently audiologists have not been able to identify children with hearing loss until the age of 2.5 to 3 years, most individuals working with the 0-3 age group have been unaware of the possible effects of hearing loss on speech and language development, reading skills, etc. At the request of First Connections, the IV coordinator made a presentation in March 2001 to a group of 40-50 El service coordinators and providers on this topic and more are planned.

Cultural Competence Training: Arkansas recognizes the existence of cultural diversity and the need for appropriate interactions with persons outside one's own culture. There are limited opportunities for cultural diversity training in the state; those opportunities will be expanded with this grant.

7. Collaboration and Coordination

The Arkansas Department of Human Services is the lead agency for First Connections (EI). An interagency agreement (App. D) already exists which delineates the responsibilities for each of the signatory agencies. This agreement was written before the advent of EHDI in Arkansas and revisions are being considered, allowing the opportunity to address EHDI needs specifically. Other current and planned collaborations between First Connections and the IHP are:

- IHP personnel, speech pathologists, parents, community audiologists, and ASD-EI coordinator drafted the audiology and aural rehabilitation EI guidelines for parents and El service providers.

• IHP staff have and will coordinate and/or present workshops on hearing and hearing loss in children under three and working with families of children with hearing loss.
• EI personnel will present information regarding EI services and procedures to audiologists
• EI functions as the "payer of last resort" for testing and/or listening appliances.
• IHP and EI will develop a plan for informed consent and sharing identifying information of children with hearing loss who need EI services.

The Arkansas School for the Deaf Early Intervention (ASD-EI) program is statewide and designed for children aged 0-5 years with hearing loss and their families. ASD-El engages in home visits to provide information on communication options, train parents, interact with children, and makes available parent advisors for families to offer guidance in the decision-making processes. Collaboration with ]HP is similar to that with First Connections, with the exception of a contracted position for a parent advocate to coordinate the Parent-to-Parent network initiative.

The Arkansas Children's Hospital (ACH) Audiology Department is the leading provider of pediatric diagnostic audiology and hearing aid fitting in Arkansas. ACH audiologists have and will continue to work closely with the IHP to:

• Provide technical assistance to hospital screening programs and other audiologists.
• Inform physicians of ACH audiology clinics outside the Little Rock area.
• Serve on committees as part of the CDC cooperative agreement.
• Serve on the state UNHS Advisory Board (as chair presently).
• Pilot the Windows version of the Hi*Track software with the IV.
• Host Pediatric Grand Rounds for audiologists across the state.

The University of Arkansas at Little Rock/University of Arkansas for Medical Sciences jointly administer the sole audiology training program in Arkansas. Collaboration among practitioners, the training program, and the IHP will consist of:

• Student exposure to pediatric assessment and counseling in the classroom and in active clinics.
• Student attendance at training sessions designed for practicing audiologists.
• Faculty and students engaged in EHDI program evaluation activities.
• Contract with two faculty members for multicultural module development.

Children's Medical Services (CMS) provides financial coverage for families whose income is too high to qualify for Medicaid, thus increasing the number of Arkansas children for whom audiologic services are provided/funded. The primary collaboration between the IHP and CMS will be an arrangement for the 25 local CMS offices to provide active follow-up of families with children needing audiologic services that the IHP Tracking and Surveillance consultant cannot locate. Such follow-up would include home visits, arranging appointments/transportation, contacting families after missed appointments, and ensuring these children are being served in a Medical Home. See Appendix K for letters of support and Section 6. Needs Assessment section for the list of additional anticipated collaborators on the UNHS Advisory Board.

8. Goals and Objectives

The long-term goal of the Arkansas Early Hearing Detection and Intervention Project is based on that of the Healthy People 2010 document and the American Academy of Pediatrics Position Statement (1999); specifically, to design and implement a sustainable system to screen newborns for hearing loss by age one month, identify those with hearing loss by age three months, and enroll them in family-centered, culturally appropriate intervention services by age six months. Specific goals for the Arkansas proposal are in the table below. Objectives and activities addressing the most pressing needs of Arkansas' EHDI system (2.1, 2.3b, c 3.1, 3.2) are highlighted. The person/entity responsible for each objective and baseline measures (when available) are also included.

9. Required Resources

The resources required to accomplish the goals and objectives of the Arkansas EHDI grant include personnel, travel, educational materials development, costs of conducting trainings, and supplies.

• Personnel (Contractual)-1.0 FTE for tracking and surveillance consultant; 1.0 FTE for parentto-parent support network; 0.1 FTE, parent advocacy consultant; and funds for cultural competence consultants.
• Travel- Funds are requested to support out-of-state travel to MCI-iB and annual national meetings, and in-state travel for technical assistance and trainings.
• Education/Training- Funds are requested to produce educational materials for families, physicians and other providers, conduct training sessions for public health nurses, social workers, early intervention specialists and others involved in the EHDI system, and conduct family needs assessment and satisfaction activities.

Supplies Funds are requested to purchase office supplies needed to carry out the project.

10. Project Methodology

Specific activities can be found in Section 8. Goals and Objectives. The Personnel Time Allocation Table follows the budget justification pages per instructions on p. 9 of the guidance.

The plan to satisfy the need for more effective tracking and surveillance is three-fold: (1) implement use of a new tracking software system (Hi*Track); (2) contract with a social worker to design a followup system for children with audiologic needs; and (3) formulate an interagency information-sharing plan that allows the IHP to function as the central EHDI data depository. As part of the reorganization of ADH, the emphasis is shifting from direct service delivery to children toward assuring those services are obtained through case management strategies. Therefore, it is anticipated that in the future local health unit (LHU) personnel will participate in the follow-up procedures of children in the EHDI process. This is an important change because there are approximately 90 LHUs in 75 counties, providing local followup. As this portion of LHU function progresses, it will allow for closer monitoring of the Medical Home status of children.

MCHB funds will be used to contract with an individual, housed at the ASD-EI office, who will function as the liaison to connect parents. Arkansas would like to connect parents who have expressed interest in participating in such a program, or an appropriate support group with an existing Parent-to-Parent network. For example, parents who have chosen an oral/aural option might be directed to AAHIC group.

Training sessions are planned on a number of topics and for at least three constituencies. First, pediatric assessment skills of many practicing audiologists must be improved. The 1P is working (CDC funds) to bring in one audiologist nationally recognized for diagnostic work and a second noted for counseling techniques on an annual basis. Another topic to be covered in these sessions include EI procedures (referral to EI,1FSP involvement, etc). Additionally, EI service providers have generally not been exposed to the possible effects of hearing loss in young children. First Connections has plans to incorporate sections on hearing into specific trainings across the state that are offered to EI providers. Audiologists and/or speech-language pathologists who work with children with hearing loss will serve as speakers. Providing graduate audiology students the opportunity to participate in these trainings will help address the pediatric gap that exists in many university curricula.

Service providers, and, in turn, their clients, will benefit from cultural diversity training. There are plans to contract with Betholyn Gentry, Ph.D., and Priscilla Davis, Ph.D., both professors of speech pathology at the University of Arkansas at Little Rock. One of their interests is multiculturalism, and they have made many presentations regarding cultural diversity to a variety of groups. The contract will consist of designing a survey to assess knowledge levels of service providers, and writing a curriculum based on the results of that assessment. The curriculum will be updated annually, based on subsequent surveys and changes in the demographics of Arkansas.

The objectives related to screening issues are central to stage one of the EHDI system. Refer rates in hospitals should be as low as possible, without sacrificing accuracy. Encouraging hospitals to offer outpatient rescreens will help ease the load on the audiologists across the state, as well as provide a local site for the rescreen, possibly at no cost to the family, which in turn should induce more parents to obtain the rescreen.

Expanding the advisory board membership will have far-reaching effects. First, more stakeholders with varying perspectives will have representation and input to the EHDI system, a fact that can only strengthen EHDI as it evolves. Second, the additional physician representation will allow for more input on the Medical Home concept.

The planned education materials for health care workers and the public are essential to raising the issues of hearing and hearing loss in children. Although magazine and newspaper advertisements are beyond the proposed budget, there are plans to submit public service announcements to television and radio stations, and in newspapers across the state to help meet the knowledge gap about hearing.

11. Evaluation Plan

Outcome and Performance Measures

Quantitative outcome measures will be the final evaluation of this system. Responsibility for collecting and analyzing outcome measures resides with the UP. Current legislation requires the IHl' to report outcome measures annually to the UNHS Advisory Board, which in turn informs the Arkansas legislature. The IHP statewide database is used to analyze outcome and performance data for individual hospitals and will be used to analyze outcome data for the state. The quarterly and annual reports will be analyzed for statewide, regional, and county variations. Providers such as audiologists and early interventionists and Advisory Board and working group members will receive information indicating state performance and outcome measures. The key measures of project success will be documentation showing

statewide performance for the following criteria taken from the Joint Committee on Infant Hearing, the American Academy of Pediatrics, and Healthy People 2010:

• number of infants screened by one month of age
• number of infants referred from initial screening
• number of infants receiving a second screen
• number of infants referred from second screen for audiologic assessment
• number of infants receiving audiological assessment by three months.
• number and age of children diagnosed as Deaf/Hard of Hearing.
• type and degree of hearing loss.
• number of infants with a medical home.
• number of families presented with a Family-to-Family support opportunity.
• number of families participating in Family-to-Family support.
• number and age at which identified infants are enrolled in early intervention.

Evaluative techniques for the specific objectives and activities of this proposal are listed in the Project Activities Time Allocation Table below.

EHDI System in Arkansas