North Carolina Project Abstract
Project Title: North Carolina Universal Neonatal Hearing Screening and Follow-up Program
Project Number: 93.110ZZ
Project Director: Mary Ann Stone, Ph.D. Phone: (919) 715-3904
Organization Name: Division of Public Health, N.C. Department of Health and Human Services
Address: 1716 Mail Service Center, Raleigh, NC 27699-1916
Contact Person: Mary Ann Stone, Ph.D. Phone: (919) 715-3904
Fax: (919) 733-2997 E-mail/World Wide Web Address: maryann.stone@ncmail.net
Project Period: Years: 4 From: 04/01/2000 To: 03131/2004
Current Budget Period: From: 0410112000 To: 0:131/2001
A. Organizational Setting
The project (Universal Newborn Hearing Screening - Category A) will be housed in the Women's and Children's Health (WCH) Section of the North Carolina Division of Public Health. WCH has oversight responsibility for the State's newborn hearing screening program and is the State Title V grantee. The project director is Mary Ann Stone, Ph.D., who is the WCH Statewide Speech and Hearing Consultant.
B. Purpose
This project is designed to facilitate enrollment of infant's with permanent hearing loss in early intervention services, by age six months. The objective is to implement a sustainable, effective statewide universal neonatal hearing screening and follow-up program that will accomplish the project's goal.
C. Problem
This State has recently implemented a mandatory universal neonatal hearing screening program. However, eligibility determination and amplification selection procedures are not as timely as necessary to promote adequate development of language and cognition.
D. Goals and Objectives
The project's goal is enrollment in early intervention services by age six months, for infant's with permanent hearing loss, in order to facilitate language and cognitive development. The major project objectives are to implement a statewide program which provides (1) culturally competent support for parents, (2) physiologic hearing screenings, within 30 days after the neonate's birth, (3) access to audiologists with expertise and equipment for diagnosis and amplification selection by age three months, (4) coordination with the child's medical home, and (5) a protocol for timely eligibility determination.
E. Methodology
The project's activities involve professional training, public awareness, family support for Hispanic parents, and, ongoing communication with the child's medical home. Equipment will be procured to establish four audiological diagnostic sites for young infants in two underserved regions of the State.
P. Evaluation
Ongoing community needs assessments will serve to gauge progress toward achieving the project's objectives. Program evaluation and determination of State Title V outcomes involves data analysis, surveillance surveys, and monitoring of screening sites' pass rates. There will also be an evaluation of family satisfaction and the program's impact on the children and their families.
Text of Annotation
The project's goal is enrollment in early intervention services by age six months, for infant's with permanent hearing loss, in order to facilitate language and cognitive development. The project objectives are designed to facilitate a statewide universal neonatal hearing screening and follow up program that effectively promotes timely eligibility determination for the State's early intervention program. Major objectives involve (1) public awareness and professional training activities, (2) family support services for Hispanic parents, (3) ongoing communication with the child's medical home, and (4) equipment procurement to establish four audiological diagnostic and amplification selection sites for young infants, in two underserved regions of the State.
3.2 Project Narrative
3.2.1 Purpose of the Project
In 1998, over 111,000 live births were reported in the State of North Carolina. As of October 1, 1999, the State implemented a mandatory universal neonatal hearing screening program. Procedures for referral for rescreening and audiological diagnostic testing are in place, as is referral for early intervention services and procurement of assistive technology devices (e.g., amplification). However, the diagnosis and selection of amplification for young infants is an extremely slow process and there is limited availability of services because few audiologists in the State have the specialized assessment tools and/or training necessary to perform the best practice techniques nationally endorsed for use with young infants. Thus, eligibility determination for early intervention services and amplification selection are not as timely as necessary to prevent young infants with permanent hearing loss from losing critical time needed for their language and cognitive development. Other known factors that delay eligibility determination and early intervention are related to (1) family support and public awareness issues, especially for non-English speaking families, and (2) the need for systems change regarding referrals and entry level evaluations.
The goal of this State's universal neonatal hearing screening program is to facilitate infants' enrollment in appropriate early intervention services by age six months. It is proposed that this project will enable implementation of a sustainable statewide universal neonatal hearing screening and follow-up program which (I) offers family-centered and culturally competent support for parents, (2) results in physiologic hearing screening, for each ear, within 30 days after the neonate's birth but preferably before hospital discharge, (3) provides access to community-based audiologists having expertise and equipment to diagnose and select amplification for infants with permanent hearing loss by age three months, (4) promotes coordination with the child's medical home, (5) utilizes an integrated referral system and an expeditious means to complete evaluations necessary for eligibility determination for early intervention services, and (6) allows for efficient data collection and ongoing analyses to assure the effectiveness of the program, including evaluation of family satisfaction and the impact of the program on the children and their families.
3.2.2 Organizational Experience and Capacity
The Women's and Children's Health (WCH) Section of the Division of Public Health (DPH) has oversight responsibility for the State's newborn screening programs and is the State Title V CSHCN grantee. Appendix A entitled "Children's Special Health Services Guidelines for Infant Physiologic Hearing Screenings and Referrals for Early Diagnosis," describes this agency's recently developed statewide plan for performing hearing screenings, as well as the monitoring procedures and follow-up protocols to assure referral for diagnosis and early intervention. WCH has an ongoing, multidisciplinary hearing screening advisory task force with representatives from the public and the private sector, including physicians, a parent of a young child with a permanent hearing loss, and a hard of hearing parent. The task force guided the formation of the WCH state plan for universal neonatal hearing screening and follow-up, as well as guided a pilot project wherein WCH procured hearing screening devices for 69 of the State's 90 non-military birthing hospitals. This advisory task force is now responsible for-(1) reviewing and refining the state plan, based on data to be collected by this agency via monitoring and surveillance techniques, and (2) guiding the scope of WCH's hearing-related training initiatives and the efforts of this agency's 20 Speech and Hearing Teams that receive funding through the Children's Special Health Services (CSHS) Program to provide technical assistance to birthing facilities. These teams also perform hearing screenings and other limited diagnostic hearing services for young infants at no cost to the child's family. In addition, the task force is currently supporting the North Carolina Hospital Association's efforts to encourage the State's Medicaid Program to increase its per diem payment to birthing hospitals for newborn Medicaid recipients in order to cover the hospitals' operational costs related to their physiologic hearing screenings.
North Carolina's state plan as presented in Appendix A addresses issues regarding physicians' standing orders, parental awareness and documentation of parental refusal, training and supervision of personnel, procedures for initial screenings and rescreenings, and reporting and referral protocols. The plan is designed so that all information regarding screenings, rescreenings, and diagnostic assessments comes to the State via the local health departments or is reported directly to the CSHS central office which is responsible for data analysis and facilitation of communication with the infant's medical home.
This agency oversees the Child Service Coordination (CSC) Program whose staff are primarily housed in local health departments. These child service coordinators have been designated to assist families of infants with suspected or diagnosed hearing deficits to access all available; appropriate services and enroll in the State's early intervention program. There is ongoing collaboration and information sharing with the nonprofit agency entitled "BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc." (a.k.a. BEGINNINGS) which is legislatively mandated to have an active role regarding emotional, informational, and technical support to families of children identified as having a hearing deficit. .
WCH contributes funding to the Family Support Network of North Carolina which has local affiliates that serve as parent-to-parent support organizations and help parents of special needs children to find and access community resources. The Family Support Network affiliates refer to and directly utilize this agency's CSHS/Health Choice toll-free helpline that assists families and providers to access appropriate State-supported programs and local resources for children with special health care needs.
In order to advance the standards for pediatric audiological services, where they currently exist-within this State, this agency is currently presenting an ongoing series of workshops featuring nationally known experts in the field of pediatric audiology. Recently, CSHS funding protocols have been modified to enable all hearing-impaired children under three years of age to expeditiously procure state-of-the-art amplification devices at no cost to the child's family, when other external funding sources do not exist. In addition, funding to promote utilization of nationally recognized best practice techniques regarding diagnosis and amplification selection for young infants is in the process of being initiated, for service providers who agree to follow the CSHS guidelines for such audiological services.
At the current time, manually submitted reports regarding infants who missed or . did not pass the hearing screenings, or who were diagnosed with a hearing deficit, are required to be sent to the local health department and are entered at that point into the State's Health Services Information System. These data constitute the basis for tracking and linking enrollments and services provided through this State's child service coordination and early intervention programs. The data also contribute to the vital statistics that are utilized for reporting this State's status regarding national performance measures associated with this agency's Maternal and Child Health Services block grant. In addition, the health departments submit the aforementioned data directly to the CSHS central office for purposes of tracking, analysis, and information sharing with appropriate agencies such as BEGINNINGS, and the child's medical home.
Monitoring of (1) the number of infants whose parents declined to have the screening performed and (2) the consistency over time of the screening pass rates reported for each individual performing hearing screenings will occur on a quarterly basis. The first submission of this data to the CSHS central office is due in February, 2000, for the last quarter of calendar year 1999. Ongoing development of a computer program for relational database analyses and the generation of reports by the CSHS central office is a currently funded project of this agency.
Efforts are underway, within the CSHS central office, to begin development of non-English speaking materials to promote public awareness regarding (1) the State's universal neonatal hearing screening mandate, and (2) the scope of available services for both young children with suspected or diagnosed hearing deficits and their families. This agency in collaboration with BEGINNINGS is presently funding the production of 80,000 magnets, which display hearing developmental milestones for the first two years of life and the toll-free telephone number for BEGINNINGS, to be shipped to birthing hospitals for distribution to the family of each newborn.
The first surveillance survey regarding compliance with all elements of the state plan is being prepared by this agency, at this time. This surveillance survey is to be completed by all birthing facilities and known hearing screening sites. It is anticipated that the WCH Hearing Screening Advisory Task Force will complete their review of the survey's findings by August, 2000. Community "report cards" and corrective action plans will then be generated.
3.2.3 Administration and Organization
This project will be housed in the Women's and Children's Health Section of the Division of Public Health, within the North Carolina Department of Health and Human Services (DHHS). The Project Director/Principal Investigator is a DPH employee and the WCH Statewide Speech and Hearing Consultant.
Appendix B presents a biographical sketch for the project director. Through a contractual agreement with BEGINNINGS, a full-time bilingual Hispanic Family Support Specialist position will be funded as a part of this project. The proposed family support specialist will have an early childhood development, special education, and/or audiology background. This individual will annually devote approximately 50% of their working hours to provide direct service to young Hispanic children and their families.
Appendix C presents the job description for the Hispanic Family Support Specialist contract position with BEGINNINGS. This specialist will (1) provide statewide, direct family support services for Hispanic parents of young children with suspected or diagnosed hearing deficits, (2) serve as a consultant and a trainer for professionals and interpreters involved in audiological diagnosis and/or the early intervention eligibility determination process, (3) develop culturally competent, family-centered training materials for professionals, including physicians, and public awareness materials for both Hispanic families and staff of community resources serving such families, (4) facilitate focused discussions for Hispanic parent groups as part of the project's ongoing community needs assessment process, and (5) participate in the evaluation of Hispanic parents' satisfaction with this State's universal neonatal hearing screening program and its impact on the children and their families.
The project will build on the existing resources of WCH and its CSHS Program. The WCH Hearing Screening Advisory Task Force will be complemented by the formation of a Regional Project Work Group. The management and advisory team for this regional work group includes representatives from (1) the Division of Public Health, (2) DHHS's Division of Education Services (DES), including the Developmental Evaluation Centers and DES's contractual affiliate, BEGINNINGS, and (3) the Cumberland County Partnership for Children (CCPFC). The North Carolina Partnership for Children (a.k.a. Smart Start Partnership) is a nonprofit agency that is contractually affiliated with the Division of Child Development, within DHHS, and CCPFC is one of its local affiliates. In addition, it should be noted that both DES and BEGINNINGS are represented on the WCH Hearing Screening Advisory Task Force. The organizational structure within which this project will function is graphically depicted in Appendix D.
The regional work group has been actively involved with the planning of this project, and it will also play a key role in the implementation and evaluation phases of the project. The work group represents key agencies and a parent representative from a region within the State (i.e., Cumberland County and its surrounding counties) that typifies the scope of the problems to be addressed by this project. In addition to CCPFC, the other local agencies currently participating in the planning of this project are (1) the local affiliate of the North Carolina Family Support Network (i.e., Families F.I.R.S.T.), (2) the Fayetteville Developmental Evaluation Center which is a representative of the local Interagency Coordinating Council and the local Consortium that determines eligibility for enrollment in this State's early intervention program, (3) the local non-military birthing hospital (i.e., Cape Fear Valley Health System), and (4) the local health department's CSC staff.
3.2.4 Available Resources
All non-military birthing hospitals in the State presently have physiologic hearing screening devices, and one of the three military hospitals is in the process of obtaining a hearing screening device from the Division of Public Health. As discussed in subsection 3.2.2, there are 20 statewide sites supported by DPH that perform infant hearing screenings/rescreenings at no cost to the child's family. Child service coordination is available, both at the local health departments and through the State's Area Mental Health Program. Funding is available through the State's Assistive Technology Program and/or CSHS Program for advanced audiological diagnostic assessments, as well as for amplification selection and procurement, for all infants whose families have no other external, source of funding.
Intervention services for children with hearing deficits are provided through a network of state-affiliated Early Childhood Intervention (ECI) programs and by staff affiliated with this State's three Schools for the Deaf. Speech-Language Pathologist and Audiologist independent practitioner providers receive reimbursement for specialized therapies from the State's Medicaid Program and the State's subsidized children's health insurance program (i.e., North Carolina Health Choice for Children).
As part of ongoing funding of activities related to universal neonatal hearing screening, $35,500 in one-time monies would be available from DPH during the first year of this project. DPH will contribute (1) $6000 toward publication of bilingual materials, (2) $12,000 toward professional training for audiologists regarding advanced diagnostic and amplification selection techniques for young infants, and (3) $17,500 for state-level database development for tracking and monitoring activities. An in kind contribution to this project, in the amount of $12,882, represents a percentage (i.e., 20 %) of the Project Director/Principal Investigator's salary and fringe with no indirect costs included.
3.2.5 Identification of Target Population
The overall target population for this project is all infants born in this State. However as discussed in subsection 3.2.3, a regional pilot site has been designated which includes Cumberland County and its surrounding counties. A . project work group from that region has been actively engaged in the planning of this project. Utilization of a pilot site will allow for the preliminary testing of non-English public awareness materials, evaluation tools, and systems changes developed via this project for statewide use. The pilot region typifies all the statewide needs to be addressed by the proposed project, except for the need for access to sites that perform diagnostic audiological services and amplification selection procedures which are appropriate for young infants. Thus, a demonstration component is proposed for this project whereby the needed audiological equipment is funded and placed at four CSHS Speech-and -Heuin§' Team. sites within the two regions of the State (i.e., the extreme western portions" and the northeastern region) that traditionally have had limited access to necessary advanced audiological diagnostic services for young children Families in the extreme western region of the State experience a 2-3 hour drive in order to access the aforementioned audiological services. The closest service site for many families in the northeastern region of the State is an out-of-state facility.
The funding of equipment for sites located in the cities of (1) Cullowhee and Asheville in the west and (2) Ahoskie and Elizabeth City in the northeast will significantly improve the statewide implementation of the follow-up component f of this State's universal neonatal hearing screening programs In addition, the elimination of this particular access issue should allow the previously overshadowed problems or gaps in the State's screening and follow-up program to become more readily identified.
The principal city of the regional pilot site (i.e., Fayetteville) has been ranked in a 1997 University of Michigan study as the fourth most integrated city in the country. Cumberland County itself has the largest documented Hispanic population in the State, according to the US Census Bureau. The reported median family income for Cumberland County is more than $6,000 below the average for the State. In addition, two birthing hospitals are located in Fayetteville; however, one is the State's largest military birthing hospital which is currently not performing universal neonatal hearing screenings. The other birthing hospital, Cape Fear Valley Health System, is this State's sixth largest birthing facility with 4128 live births reported in 1998 regarding North Carolina residents and 60% being covered by this State's Medicaid Program.
The pilot site and other regions of this State experience cultural competence issues that impact family support, public awareness, and follow-up efforts for Hispanic families. The need for coordination with the child's medical home, especially for military families, has been identified. In order to facilitate timely submission of all paperwork necessary for eligibility determination by the local Consortium, there is a need for systems change regarding (1) development of an integrated referral system, and (2) establishment of additional provider sites that are qualified to perform the multidisciplinary entry level evaluation of the five required developmental domains, for children with hearing deficits.
3.2.6 Needs Assessment
As discussed in subsections 3.2.3 and 3.2.5, utilization of a regional work group has facilitated the planning of this project's objectives based on perceived needs identified by each of the state and local agencies slated to participate in the management and pilot test components of the project. However, since this project will have statewide impact, it will be necessary to determine (1) unmet needs and barriers that may be peculiar to specific regions of the State, (2) successful strategies to deal with the objectives of this project that are currently in place within individual communities in this State or at the national level, and (3,) local community leadership across the State that will be willing to spearhead the acceptance of proposed systems changes. It will also be necessary to determine the need for representation on the Regional Project Work Group by additional constituent populations such as Hispanic parents or physicians from the private sector.
Ongoing community needs assessments throughout the term of this project, via questionnaires and regional, focused group discussions, will allow statewide input regarding newly identified and/or continuing gaps in the State's early detection and intervention process for young infants with hearing loss. The population to be queried will include Hispanic and English-speaking parents, family support groups, local health departments, birthing hospitals, pediatricians/family practitioners, local Interagency Coordinating Council and Consortium members, early interventionists and audiologists, as well as other agencies and professionals serving infants with permanent hearing loss and their families. In particular, during the second half of the grant period (i.e., third and fourth year), the intent is to focus on identification of gaps in this State's early detection and intervention process that occur between the time following eligibility determination and the time of enrollment of young infants with hearing deficits in an appropriate program of early intervention services.
3.2.7 Collaboration and Coordination
Appendix E contains the purpose statement from the statewide early intervention interagency agreement which lists the agencies/parties that have committed to collaboration regarding the provision of services for children with special needs who are under five years of age. As one of the signatories of the aforementioned agreement, the Women's and Children's Health Section of the Division of Public Health plays a significant coordinative role in the delivery of health-related services to this State's infants and toddlers.
WCH's ongoing collaborative efforts with BEGINNINGS have been discussed in subsection 3.2.2. DHHS's newly formed Division of Education Services now has oversight responsibility for (1) the contract with BEGINNINGS, (2) the State's early intervention program under Part C of IDEA (i.e., Infant-Toddler Program), and (3) the Developmental Evaluation Center (DEC) Program which was formerly administrated by DPH. The 19 statewide DECs are responsible for assuring that the required multidisciplinary entry level evaluation for eligibility determination is timely completed in order to meet the Federal requirements for early intervention programs. Nine of DPH's 20 CSHS Speech and Hearing Team sites are based at DECs. One of the four sites that will receive diagnostic audiological equipment as part of this project is a state-. operated DEC. Two additional sites are housed within the same agency as the local DEG and share staff.
Appendix F presents a statement of support from Families F.I.R.S.T., the Family Support Network affiliate that serves Cumberland County. This . document affirms support for the proposed project, especially with regard to the components dealing with culturally competent support for non-English speaking families who are attempting to accept and deal with the special needs of a child diagnosed with a permanent hearing loss. Two Hispanic parents within this local organization are available to provide input to the regional work group.
The Cumberland County Partnership for Children is one of the signatories of the Memorandum of Agreement presented in Appendix G that outlines the management and advisory team's role for implementation of this proposal. As discussed in subsection 3.2.3, CCPFC has been a significant contributor regarding the planning of this project and will be taking a lead role regarding the evaluation component of this project, subject to the approval of its Board of Directors. This project includes a proposal for a contract with CCPFC for the services of a program evaluation consultant to guide the development of evaluation tools for this project and provide ongoing assistance for the duration of the grant.
3.2.8 Goals and Objectives
The goal of this project is to facilitate language and cognitive development for infant's diagnosed with permanent hearing loss, by enrolling such children in a program of appropriate early intervention services by age six months. To accomplish this goal, the collective objective of this project is to implement a sustainable statewide universal neonatal hearing screening and follow-up program which (1) offers family-centered and culturally competent support for parents. (2) results in the performance of a physiologic hearing screening, for each ear, within 30 days after the neonate's birth but preferably before hospital discharge, (3) provides access to community-based pediatric audiologists having expertise and equipment to diagnose and select amplification for-infants with permanent hearing loss by age three months, (4) promotes coordination with the child's medical home, (5) utilizes an integrated referral system and an expeditious means to complete multidisciplinary entry level evaluations necessary for determination of eligibility for early intervention services, and (6) allows for efficient data collection end ongoing analyses to assure the effectiveness of all program components, including evaluation of family satisfaction and the impact of the program on the children and their families.
Outcome-oriented activities are proposed as the means to accomplish each of the following six components of this project's collective objective:
3.2.9 Required Resources
The resources being requested for this project, as discussed in subsections 3.2.3 and 3.2.5, deal with the identified categories of need and the requirement for an annual visit with the grantor agency. The total amount requested for the four year period of the grant is $480,000, with $150,000 being sought for the first two years of the grant and $90,000 being requested for the third and fourth years of the grant. The specific resources requested are as follows:
The fiscal control and the accounting procedures utilized by the State of North Carolina will be in effect regarding any grant funds awarded to the Division of Public Health in connection with this project. Grant funds will be used only for the purposes specified in this project proposal.
3.2.10 Project Methodology
As discussed in subsections 3.2.2, 3.2.3, and 3.2.6, parents/families have been involved with the design of this State's plan for universal neonatal hearing screening and the planning of this project. Cultural competency is a major concern within this project, and Hispanic and English-speaking parents are proposed to be involved in the ongoing community needs assessment process which is a vital component of this project's plan for evaluation. There will also be an evaluation of family satisfaction and the impact of the overall program on the children and their families.
The overall model for attaining this project's objectives is based on a formative evaluation process utilizing outcome-oriented activities to guide the direction of the management team. The measurement of progress will primarily focus on systems and performance indicators. As discussed in subsection 3.2.7, CCPFC will be taking the lead role in facilitating the coordination and development of an evaluation plan that addresses process and implementation of the project, with the primary emphasis on outcome data. This evaluation plan will be developed in conjunction with the state and local stakeholders. The information gathered-through the evaluation process will assist statewide implementation of the project. The plan will adhere to the utility and participatory evaluation methods as defined by the American Evaluation Association. CCPFC has successfully demonstrated its evaluation capacity through its involvement at the county level with evaluation efforts, and it is in the process of developing a Program Evaluation Technical Assistance Component (PETAC).
The Project Activities Time Allocation Table is presented in Appendix H. Information pertaining to process outcome indicators for each of the four years of this project is listed in this table. The Personnel Allocation Chart for this project is presented in Appendix I of this proposal. This chart lists the projected number of days of service to be contributed by the persons designated as the project director, family support specialist (i.e., contracted position), and the contracted program evaluation consultant. Funding is requested through this grant for the contracted position with BEGINNINGS and the contracted program evaluation consultant.
3.2.11 Plan for Evaluation
The plan to monitor and evaluate the efficiency and effectiveness of this State's universal neonatal hearing screening program has been discussed in subsection 3.2.2. and deals with surveillance surveys, monitoring the consistency of the hearing screening sites' pass rates, and the generation of community "report cards" and corrective action plans. The plan to evaluate the impact of this project has been discussed in subsections 3.2.6 and 3.2.10. Ongoing community needs assessments will serve to gauge progress toward achieving the six components of the project's collective objective and its goal.
A questionnaire and an interview process will be utilized for evaluation of family satisfaction and the impact of the overall program. These components of the evaluation plan will be implemented in the last stage of the project (i.e., fourth year). Behavioral observations regarding language and cognitive development will also be incorporated into the design to assess the program's impact based on functional outcomes attained by the young children with hearing deficits who (1) were diagnosed and provided with amplification by age three months, and (2) received one or more of this State's specific early intervention services by age six months.
[PROJECT ACTIVITIES TIME ALLOCATION TABLE]