ALABAMA NARRATIVE
2.1 The Purpose of the Project:
This grant is submitted by the Alabama Department of Health, Bureau of Family Health Services to request funding that will allow development and implementation of a statewide UNBHS Program. This program will be developed into a fully integrated service delivery system that is fully sustainable by the end of the four year grant period.
Studies have shown that permanent sensorineural hearing loss (SNHL) occurs in up to three of every one-thousand live births. Alabama has over sixty-two thousand births annually, meaning close to 200 babies are born deaf or hard of hearing each year. Later onset and progressive SNHL may also occur in children in the early years of life. Studies have shown that children who are identified early and provided with appropriate audiological, medical and educational services can develop language, cognitive and social skills much faster. With appropriate intervention, these children may reach developmental milestones comparable with their hearing peers. However, often times these children are two to three years of age before they are diagnosed.
Advances in technology now make it possible to accurately screen for newborn hearing loss in a safe, efficient, and timely manner while the baby is still in the newborn nursery. Refinements in the equipment have allowed costs to be reduced and the devices have become user-friendly. Many hospitals now have NHS programs and over fifty percent of newborns nationally are now being screened.
Alabama, however, is a relatively poor state. Although 54 of the 67 hospitals now have voluntarily implemented screening programs, or are in the process of doing so, most of these programs are not reaching all of its babies. Also, we do not have the infrastructure for program direction, data and tracking for appropriate diagnostic follow-up, or methodology that can assure early intervention services are provided in a timely manner. If we receive this funding, implementation of a state-wide UNBHS program that is linked to appropriate audiological, medical, and educational services will insure that all newborns:
2.2 Organizational Experience and Capacity:
The Alabama UNBHS Program will be housed in the BFHS. The BFHS does not directly administer aspects pertaining to children with special health care needs (CSHNC), but however, contracts with Children's Rehabilitation Service (CRS) within the Alabama Department of Rehabilitation Services (ADRS), which administers services to this population. The Alabama Early Intervention System is located within CRS. BFHS collaborates with numerous other groups and state agencies that include:
The Alabama Ear Institute (AEI) is a 501 © (3) public not for profit foundation that provides educational, research and family-oriented service programs for deaf and hard of hearing children over the past 3 years, BFHS has collaborated with AEI to facilitate the voluntary implementation of NBHS Programs in 54 of 67 birthing hospitals in Alabama. AEI has provided numerous educational programs on all aspects of UNBHS, on-site training and technical support for hospitals, and conducted the States' Needs Assessment Surveys and analyses annually since 1997. AEI houses the Alabama Hearing Resource Center, one aspect of which is family-oriented support programs for families whose children are deaf or hard of hearing. These type programs are provided with direct input from its Parent Advisory Council, Headed by a mother with three profoundly deaf children under the age of five.
2.3 Administration Structure:
The Alabama UNHS Program will be administered by the Department of Public Health through the BFHS. Dr. Tom Miller, the Director of BFHS, will have primary responsibility for directing the program (appendix, pg). Dr. Miller will coordinate project activities within the UNBHS Program, through the Child Health Branch, and Division of Administration. He will receive input from the Bureau's Epidemiology Branch and the UNBHS State Advisory Board. The Director of Child Health, Dianne Sims, R.N., will supervise the Screening Coordinator, to be named, and will report to Dr. Miller (appendix, pg). The Program Resource Coordinator, Pamela Cain, MS, ME.D, CCC-A, is housed at AEI where she is the Director of the AEI Newborn Hearing Screening Project and the Alabama Hearing Resource Center. She reports to Robert L. Baldwin, the Institute's President, Chairman, and Director since 1990. Dr. Baldwin has practiced otology for 30 years and has broad experience and interest in children's hearing health services and issues. BFHS will collaborate with AEI and both the Screening Coordinator and the Resource Coordinator will work closely to insure continuity as they implement the activities of the program. BFHS will contract with AEI to provide education, technical assistance and family-centered support programs. Both entities will have appropriate space allotments and have adequate secretarial and clerical support (see appendix, pgs).
Other entities directly involved include the Alabama Department of Rehabilitation Services, through its CRS Division and, Alabama Early Intervention System (AEIS), and the AIDB. Assistive collaborators include the Governors Children's Commissioner, the Alabama Developmental Disabilities Council, the State Department of Education, and the State Perinatal Advisory Committee (SPAC).
Audiological and medical services are provided by many private and institutional providers. CRS is responsible for hearing care for children in Alabama and particularly addresses the needs of the indigent population.
2.4 Available Resources:
The key staff is described under Section 2.3. ADPH and AEI. Efforts, thus far, have been supported by funds from many state agencies, corporations, foundations, and philanthropists. CRS has committed $15,000 per year for the project, AEI $60,000 per year, AIDB $11,000 per year, AEIS $11,000 per year, and the Department of Education $4,000 per year. BFHS was recently granted $500,000 as a one-time payment from Alabama's tobacco settlement to assist with the UNHS Program. These funds will help provide much needed equipment and updated technologies to Alabama hospitals.
We hope to provide screening equipment (OAE and ABR) to hospitals, regional providers and centers, and plan to address manpower shortages in rural and remote areas where there are inadequate numbers of audiologists and those who provide related services. A survey of providers and services to access this issue has not been done to date so it is difficult to anticipate the current magnitude of this need. Legislative initiatives are expected to result in approval of a mandated UNBHS Program for Alabama by 2002.
BFHS and related agencies have a broad array of experienced health service providers. Alabama has an inadequate number of audiologists and an even fewer number of certified pediatric audiologists who are not strategically situated around the State. Likewise, there is a need for more Speech and Language Pathologists trained in and experienced with testing in newborns, infants and young children. There currently are only five certified auditory-verbal therapists with the majority residing in Birmingham.
Facilities and space allotments for both BFHS and AEI are sufficient to administer the program.
2.5 Identification of the Target Population and Service Availability:
In 1998, Alabama had 62,025 births, of which 69 percent were white and 32 percent were black or other. Hispanics and Asians represented 2.2 or .33 percent of the total (see tables 3 & 4, pgs). The target population for this program is all babies born in Alabama. Although 99 percent of Alabama babies are birthed in hospitals, in our very large rural areas, access to health services is poor, especially among blacks and lower socio-economic groups. Even though hospitals report that over 90 percent of newborns were screened there were significant problems in data management and control that cannot allow accurate documentation of that figure. Additionally, there were no effective methods for connecting babies from their NHS programs to appropriate diagnostic and intervention services. Culturally competent support to families, e.g. interpreters and ethnically diverse providers, is lacking and most primary care physicians were not knowledgeable about or involved with NHS.
Other barriers to implementation include limited resources for many smaller hospitals with low birthing censuses, the lack of more advanced screening and diagnostic testing using tone-pip auditory brainstem response and inadequate knowledge of many providers regarding various communication options available to children who are deaf or hard of hearing
Currently, there is not a support system for hospitals with NHS programs to allow system direction and oversight, data and tracking management and linkage to intervention services.
2.6 Needs Assessment:
AEI conducted a needs assessment survey for the State of Alabama in 1997 and this has been updated semi-annually with the latest result coming from October 2000. The results of these surveys are summarized in Table 5 (pgs). Information from these surveys and other information sources regarding current status in seven goal areas can be summarized as follows:
|
Goal Area |
Current Status in Alabama |
| 1. Implement and operate statewide sustainable UNHS programs | 54 of 67 hospitals have implemented UNHS programs over the last 3 years as of October 1, 2000 or have administrative approval. Hospitals report high screening rates indicating that over 90 percent of babies are being screened, but no organized system of reporting by these facilities allows us to validate their numbers. Alabama has an electronic birth certificate but only reports Family History of Deafness. It has no linage at this point to NHS (see pp…. Database Reports table _ and _.) |
| 2. Infant referred from screening programs will receive timely diagnostic evaluations. | State law does not require reporting on diagnostic evaluations and many babies are referred to community-based providers, particularly if they live in larger cities. In smaller rural areas services may not be available. There is currently no way to evaluate the status of diagnostic evaluations. |
| 3. Infants with hearing loss will receive timely and appropriate intervention. | For families living in more populated areas and cities the process may work but there is not a formal mechanism for that to happen. Adequacy and availability of EHDI services in the more rural and less populated areas these needs are probably not being met. |
| 4. All children will have a medical home where they receive health care services | Although there is a mechanism in place for the provision and assignment of a medical home, many times the process is delayed. Also, primary care providers and related health care professionals do not have adequate knowledge of NBHS issues. |
| 5. Implement a data management and tracking system linked to other health care systems. | There is no manual or computerized mechanism for hospitals to enter, track and provide data on their NHS activities. Many babies are lost to follow-up and others may receive delayed diagnostic, medical, and educational intervention. |
| 6. Develop and implement a mechanism where information about the UNHS program is disseminated to relative stakeholders. | Although some information is available, it is in bits and pieces. The Alabama Ear Institute has provided educational, technical, and parent support programs, but a broader range of activities using all modalities of training and teaching is not currently in place. |
| 7. Make sure adequate resources are available to cover needed UNBHS services and provide sustainability for the UNHS program in 4 years | Alabama is a relatively poor state, but health care coverage is available to virtually every child in the State. However, many times there may be delays in coverage that prohibit timely and appropriate diagnostic and intervention services Our fund raising efforts have been helpful but fall short of what is needed for continued financial stability. State provided services need more manpower to enhance the effectiveness of the UNHS system. |
Many hospitals have implemented NHS and hospitals report that over 90 percent of births are being screened, but the lack of state-wide data management and tracking system does not allow confirmation of that number. Although many newborns may be referred for appropriate diagnostic and intervention services in the larger cities, a number may well be lost to follow-up and victimized by late diagnosis, speech and language deficiencies, and poor school performance. Many programs have high false positive rates and referral numbers may be high. Much remains to be done in Alabama to have an effective UNBHS Program.
2.7 Collaboration and Coordination:
Alabama has a wide array of agencies, foundations, and individuals in addition to the Alabama Ear Institute to provide assistance (see UNBHS project flow chart, pg) in UNBHS program planning, implementation and providing access to service (see appendix, pg).
2.8 Goals and Objectives:
The goal of this project is to implement a statewide UNBHS program in Alabama that can be effectively operated and by the end of four years will be sufficiently institutionalized so that it can be maintained without extramural funding. The specific objectives to be accomplished by the end of the 4 year grant period are listed in Table 2.
Table 2: Objectives for the Alabama UNBHS program
| Objective |
| 1. Ninety-nine percent of all newborns in Alabama will be screened for hearing loss before they are discharged from the hospital. |
| 2. Infants who do not pass the screening test will receive timely referral for diagnostic and appropriate audiological evaluation by three months of age. |
| 3. Babies with identified hearing loss will receive appropriate audiological, educational , and medical intervention by six months of age. |
| 4. To establish medical home for all babies and develop means to expedite and facilitate existing programs. |
| 5. Provide accurate information and program status and follow-up for all babies that need EHDI services. |
| 6. Disseminate information to all stakeholders regarding the UNBHS program and in turn enhance more complete participation by all parties with a heightened degree of knowledge. All infants screened for hearing loss will be connected with a medical home. |
| 7. Enroll all children in insurance programs that cover services and seek additional funding for UNHS program within 4 years. |
Specific Activities addressing the above objectives are described in section 2.10.
2.9 Required Resources:
Detailed information on needed resources is included in the Budget Justification. The requested total of $729,438.00 is needed in order to achieve the goals and objectives of this project and to pursue the proposed activities. The monies will provide for direct and indirect costs for key personnel, contracted services, travel, equipment and supplies.
Standard accounting principles based on accepted practices will be used. Financial control will rest with ADPH, BFHS, under the Division of Administration and the Child Health Director.
2.10 Project Methodology:
We would like to build upon the foundation already set to move rapidly toward implementation of an integrated state-wide, family-oriented, culturally-competent and cost-effective UNBHS program for Alabama's newborn babies that is satisfactory to all.
Aware of the data from our needs assessment survey, the activities of this project will focus on:
Realizing that accomplishing these priorities will be a gradual process extending over the entire four year grant period, emphasis will be placed on the first two priorities during the first year. Although emphasis will be placed appropriately, all priorities listed above will be addressed from the inception of the project to varying degrees. Some action is ongoing for priorities and that will be continued. In years two to four, we plan to complete the project with a concerted effort from all concerned.
2.10.1 Implement and operate a statewide sustainable UNBHS program.
Objective: Ninety-nine percent of all newborns have their hearing screened prior to hospital discharge.
A needs assessment survey conducted by AEI in 1997 revealed that only 17 of 74 Alabama hospitals with birthing facilities were offering any kind of hearing testing for their newborn babies. As a result, only 22 percent of the 60,000 newborns in our state were being tested. As a result of these findings, BFHS in collaboration with AEI, formed a state-wide newborn hearing screening task force consisting of a wide array of appropriate state agencies, including BFHS, CRS, Alabama Early Intervention Systems, Bureau of Health Statistics, Epidemiology and Data Management Branch, Computer Systems Center, Newborn Metabolic Screening Program and AIDB, as well as related parties, providers and parents. This task-force has met five times to discuss UNBHS for Alabama. Items considered and discussed included feasibility, administration, data management, medical and audiological protocols, financial management, early intervention, tracking, and cost. A proposed plan for UNBHS in Alabama was drafted. No action has been taken however because of lack of identified funding sources and additional manpower needs. During this time, however, much progress was made by this group because of the collective interest and enthusiasm shown by involved parties as they worked with a spirit of mutual and inter-agency collaboration.
Likewise, there were activities ongoing as AEI, in cooperation with BFHS, continued its project to implement voluntary hospital-based UNHS programs in our State. AEI, through its Alabama UNHS Project, also provided state-wide education seminars and workshops, on-site instruction, technical assistance and training for hospitals, professionals, administrators and parents, public awareness forums and parent/family support services. As a result, we now have 54 of the 67 remaining hospitals with NHS programs in place or being implemented. Thirty-nine hospitals have implemented programs and 25 have administrative approval and are in process of implementing programs. Based on the birthing census at these hospitals, this would indicate that over 90 percent of newborn babies are being screened. However, hospitals have no data management or tracking systems in place that allows accurate documentation of these figures, and certainly many babies are being missed.
We plan to establish UNBHS programs in the remaining 13 hospitals who do not currently have programs. We would like to continue already existing mechanisms for establishing programs as referenced above through the collaborative efforts of BFHS and AEI. The Project Resource Coordinator (PRC) and her Director at AEI will continue to schedule on-site visits to these hospitals with an already formalized program for presentation. These programs consist of a discussion of the project overview, didactic lecture, hands-on training, help with procurement of equipment, technical assistance, and follow-up support. Informational packets and pamphlets for administrators, professionals and parents, protocols and forms for testing, follow-up and referral are provided. Emphasis in this group will be place on getting the program operational as soon as feasible. Statewide educational and training programs, seminars and workshops will also be provided.
We will continue implementation of UNBHS programs in 15 hospitals who already have administrative approval. Although many of these are moving toward full implementation, still significant monetary issues persist at certain hospitals. Since that element is addressed by this grant request, completion should proceed in a timely manner.
We would also like to maintain and enhance the UNBHS programs in the 38 hospitals that have existing programs. Many, if not most of these hospitals are not truly screening all babies. So, we plan to begin efforts directed toward improving efficiency and management of their programs using the same model described above. We will begin implementing formalized data management and tracking systems to ensure proper follow-up.
It is most likely that many babies now are discharged from the hospital without having their hearing tested. We plan to establish an outpatient screening mechanism for hospitals so that these babies will not be missed and lost to follow-up. This system will make use of hospital services and local providers. It will need to be tailored to each hospital program since many rural and remote areas of our state do not have local resources to call upon.
2.10.2: Refer infants that fail screening for timely diagnostic evaluation.
Objective: Infants who do not pass the screening test will receive timely referral for diagnostic and appropriate audiological evaluation by three months of age.
Currently, there is no simple way to know where certified audiologists and pediatric audiologist are located in regions about the State. We plan to establish and make available a directory of certified and qualified audiologists and pediatric audiologists in the state who are experienced in testing newborns and young children. We will accomplish this task by developing a database of all licensed audiologists who have the technology, experience and interest in conducting complete audiological assessment for infants and young children. This will be formatted so as to have sub-categories for each region and locale. This directory will be for providers and will be given to all hospitals and also be listed on the UNBHS program web-site and available to all interested parties including parents. This directory will provide the needed information to all Alabama hospitals with birthing facilities, their hospital based screening coordinators, physicians identified with the patient's medical home, and parents. We will provide educational programs throughout Alabama to enhance knowledge of recommended diagnostic audiological protocols in newborns and young children.
The establishment of a data management and tracking system that will interface with the NBHS coordinator, NBHS resource screening coordinator, audiological provider, and medical home provider and will assure timely services are rendered. Drawing from the positive experience from the Utah Pilot Project to enhance this facet of their NBHS program, we will create a form for UNBHS hospital staff to complete. The form will include contact information about the baby, the primary care physician, the audiologist or facility, e.g. hospital, audiologist, that the parent has elected to see, signed consent for the hospital, audiologist and the state screening coordinator to share the results of the testing with each other. The appointment will be made by hospital staff and so noted with time, date, address, and phone number of the provider. The form will be given to the parent and triplicates will be kept at the hospital and sent to the audiologist and state screening coordinator. The back of the parent and the audiologist copies will have a space to report the results of the tertiary screen whether or not it is done at the hospital or in the audiologists' office. Once a computerized tracking system is provided this process will be facilitated. Since a copy of this form is sent to the State Coordinator within 2 weeks, if the baby fails to return for this second stage screen, further efforts can be made to contact the parents and ensure the appropriate service is provided.
2.10.3: Babies diagnosed with hearing loss will receive timely and appropriate early intervention.
Objective: Babies with identified hearing loss will receiving appropriate audiological, educational and medical intervention by six months of age.
Many babies who fail diagnostic audiological testing (1-1.5 percent) are lost to follow-up and therefore fail to receive the necessary amplification, education and medical interventions that they need. Alabama currently has no system in place in to ensure that the process progresses past the screening and diagnostic stage. For the system of screening and diagnosis to be effective there must be a way provided to avoid this breakdown in the system.
To correct this problem, we plan to use the system described above that has been used by other states successfully. Since the second stage screener (audiologist, hospital) will fill out the space provided to record results of the test and this will be sent to the State Coordinator within two weeks, if the baby fails and needs interventional audiological, medical and educational services, most babies can be referred within three months if not sooner.
Included in the Qualified Provider Directory discussed in the previous section will also be listing of qualified audiologists and the amplification services they provide, related medical and surgical specialists, educational and grief psychological providers. Again, this will be sub-categorized by region and locale.
2.10.4: All babies with hearing loss will have a medical home.
Objective: Develop means to expedite and facilitate existing systems
Alabama currently has a system of assigning a Primary Medical Provider to all Medicaid eligible newborns operated under the Primary Care Case Management Program known as Patient 1st. Mechanisms also exist whereby babies who do not return for follow-up exam to their provider can be located to facilitate and accomplish the task. ADRS is responsible for implementing statewide services for children with developmental delays and /or disabilities under the Individuals with Disabilities Education Act, Part C. Any child with a permanent disability qualifies for the program. Services include multi disciplinary evaluation and assessment, service coordination among providers, coordinators and agencies; provision for speciality services such as nursing, physical therapy, speech therapy, family support; and other related services and strategies to build on family strengths and child potential. These services are available to the families without cost (income limits imposed) or prorated if they are able to pay. Hearing services are coordinated through CRS, which has clinics and centers throughout the state with audiological and intervention services. Audiologists and speech therapists are available at certain "key" locations about the State. They also provide hearing aids and have just this year allowed the purchase of digital hearing aids for children. Within CRS is also the Alabama Early Intervention System.
2.10.5: Implement a statewide system for data management system and tracking system to provide accurate information about program status and follow-up of babies needing EHDI services.
Objective: Provide accurate information about program status and follow-up for all babies that need EHDI services.
The Utah Department of Public Health designed a computer based data management system for EHDI programs and many states and their hospitals now use the system. The system is known as HI TRACK (Hearing Identification Tracking) and allows hospital staff to quickly and efficiently:
(See Appendix Pg ).
During the first year of the project we will provide 7-12 hospitals the HI*TRACK software and the Alabama Department of Health, BFHS, will house the same software to manage the data to assure appropriate tracking and follow-up. This will also allow the Screening Coordinator information needed to insure all babies referred from screening receive appropriate and timely services. Reports from the hospitals will be submitted to the Screening Coordinator each month.
We will also furnish hospitals and related providers with appropriate printed information, protocols for UNHS, Diagnostic and Hearing Aid Assessment, Medical Assessment, and service manuals (see appendix*). NCHAM will assist with installation, training, technical assistance and education. Additionally, we will conduct educational seminars, on-site and telephone assistance (provided also by NCHAM), and other needed support services as identified. We would like to develop appropriate protocols and data management forms for these hospitals and assist with quality assurance and control once the systems are operational. These activities will assure that information will be available and disseminated to all relevant stakeholders.
In years two and four of the grant period, we plan to provide and implement this system for all hospitals on the UNBHS program in the same fashion. During this period, we plan to link the UNBHS data management system to other relevant databases such as Vital Statistics, Birth Defects, Early Intervention, Child Find, and the Women Infant and Children's Program (WIC). This will help to reduce the number of babies that may be lost to follow-up as well as providing additional data for public health services.
2.10.6 Develop and implement a mechanism where information about the UNBHS program is disseminated to relative stakeholders.
Objective: Disseminate information to all stakeholders regarding the UNBHS program and in turn enhance more complete participation by all parties with a heightened degree of knowledge.
The primary responsibility for these activities is the BFHS State Screening Coordinator working in close collaboration with the AEI Resource Coordinator. AEI also has a Parent Advisory Council with state-wide representation who will be represented in this process. We would like to create a committee from the State Advisory Board with broad representation to provide input so that these activities will be family-oriented and culturally competent.
We plan to hold a number of appropriate programs, forums, hands-on workshops, and on-site training for all relevant stakeholders. Over the past three years, AEI has conducted three statewide seminars each year doing these very activates. During the year 2000, these programs were on Information and System Development for UNHS, Diagnostic Techniques for Hearing Testing In Newborns and Young Children (hands-on workshop in hospital nursery), and The Final Step in UNHS: Early Intervention. Visiting expert faculty included Karl While, PH.D., from Utah, Terese Finitzo, MS, from Texas, and Maria Trozzi, MS, from Boston , an internationally recognized expert in grief counseling for parents and children. Working closely with the State Screening Coordinator these activities will be continued and enhanced.
Additionally we will:
2.10.7 Make sure adequate resources are available to cover UNBHS Services and insure the sustainability of the Alabama UNHS Program.
Objective: Enroll all children in insurance programs covering services and seek ongoing funding for the UNHS program within 4 years.
Health insurance coverage is made available to virtually every child in Alabama from various sources, private insurers, Medicaid Chip, All Kids, and the Alabama Child Caring Foundation (ACCF).
In Alabama, Medicaid insures 680,000 lives, Blue Cross & Blue Shield has three million subscribers, CHIP has 48,000 with a capacity of 60,000, and the ACCF covers 6,500. However, many families may not be aware of the available resources and many times there can be delays in getting in the system (Medicaid). So, we need to find ways to address those issues and improve efficiency.
The Alabama Ear Institute will continue its ongoing and planned resource procurement plans. AEI has been successful in most areas of monetary enhancement, including grant applications to local and state foundations and agencies (see Appendix, .p), corporate and individual donors, and fund raising events and activities. We plan to work closely with BFHS to review, evaluate and anticipate our short and long-term needs and direct our continued efforts accordingly.
The support that has been received and committed from state agencies, bureaus and departments and related entities will hopefully be continued and we would like to identify additional funding sources at that level within the next four years.
We would like to have a long-range planning forum or committee, with relative stakeholders and appropriate finance experts from ADPH, to consummate a formal plan for the future by the end of the 4-year grant period.
2.11 Evaluation Plan:
Described under Section 2.1.5 is the data-management, tracking, and follow-up system as well as a manual system as a backup (also will be used where HI*TRACK not yet available) that we plan to have in all hospitals by the end of the 4 year grant period. Coordination of efforts through the Alabama Department of Public Health, BFHS, Bureau of Health Statistics, Epidemiology and Data Management Branch, and the Screening Coordinator, data will be evaluated with the following parameters for measuring success with national core outcomes as described in "National Agenda for CSHCH: Measuring Success."
These outcomes are:
Our UNBHS program will develop ways to assemble and coordinate this data so that meaningful information regarding quantity and quality will be provided. Using this information, which will be distributed to all relevant stakeholders, will allow us to continue to evaluate and improve our program during its implementation and operational stages.