PROJECT ABSTRACT
Project Title: Universal Newborn Hearing Screening
Project Director: Stephen E. Saunders, M.D., M.P.H.
Phone Number: 217 / 782 - 2736
Organization Name: Illinois Department of Human Services
Contact Person: Michael R. Larson
Phone Number: 217 / 782 - 2166
Fax Number: 217 / 785- 5247
E-Mail address: dhshp51@dhs.state.il.us
World Wide Web: www.state.il.us/agency/dhs
Project Period: Years: 4 From 04/01/00 To 03/31/04
Current Budget Period: From 04/01/00 To 03/31/01
ORGANIZATIONAL SETTING: The Illinois Department of Human Services (DHS) will oversee Illinois' Universal Newborn Hearing Screening (UNHS) program. The project will be under the direction of Stephen E. Saunders, M.D., M.P.H., Associate Director for Family Health. DHS is the recipient of the Maternal and Child Health Services Block Grant under Title V of the Social Security Act. DHS is organized into five divisions; the Division of Community Health and Prevention, where this project will be housed, is organized into the Office of Family Health and the Office of Prevention. The Office of Prevention is responsible for Early Intervention services (Part C of the Individuals with Disabilities Education Act). The Office of Family Health is responsible for Maternal and Child Health (MCH) programs, including UNHS. The program will be implemented in collaboration with the Illinois Department of Public Health (IDPH), which operates the state's Newborn Genetic and Metabolic Screening program, and with the University of Illinois at Chicago Division of Specialized Care for Children (DSCC), which operates the state's program for children with special health care needs (CSHCN).
PURPOSE: The proposed project will result in a sustainable statewide universal newborn hearing screening program. This program will include physiologic screening prior to hospital discharge, audiologic evaluation by 3 months of age and enrollment in a program of appropriate early intervention by 6 months of age. On-going care will be provided in coordination with the child's medical home and family support services.
PROBLEM: Illinois faces three challenges in implementing universal newborn hearing screening. First, screening and reporting practices must be improved among a group of 65 hospitals that have been provided with screening equipment or have voluntarily initiated screening. Second, screening must be implemented by nearly 100 more hospitals to achieve universal screening. Third, follow-up is incomplete on nearly two-thirds of the infants with suspected hearing loss that have been reported.
GOALS AND OBJECTIVES: The goal of Illinois' UNHS is to ensure that all newborns will be screened for hearing impairment. The collaborating state agencies propose the following objectives to assess the effectiveness and efficiency of the newborn hearing screening program:
1. By December 31, 2002, 95 percent of infants born in Illinois hospitals that offer obstetrical services will be screened for hearing loss prior to hospital discharge.
2. By December 31, 2002, 95 percent of infants with a suspected hearing loss will receive a diagnostic examination by 3 months of age.
3. By December 31, 2002, 95 percent of children diagnosed with an eligible hearing loss will begin receiving appropriate Early Intervention and CSHCN program services, including fitting for amplification devices, before 6 months of age.
METHODOLOGY: The screening program begins when hospitals screen for hearing loss, using either otoacoustic emissions or automated auditory brainstem response procedures, and reports screening results to DPH. Children with suspected hearing loss will be entered in DPH's Computerized Accessible Network for Tracking Mothers/Infants Information System (CANTMIIS), which was developed to track children with suspected metabolic diseases and has been modified to include hearing screening. Tracking begins with notification of the infant's physician informing him or her of the abnormal screening result. Follow-up continues through diagnosis until enrollment in on-going medical care through the Part C or CSHCN programs. Public health nurses from local health departments are used to contact families who are difficult to find. DSCC will, without prior authorization, pay credentialed audiologists or physicians who provide the post-discharge diagnostic testing necessary to confirm hearing loss.
The training plan has three components. First, a series of large-scale training programs will target hospitals that are currently conducting universal screening, audiologists, physicians, federally-qualified health centers and Part C program service providers. The training programs will be arranged by the state-level project team and will be conducted by the national technical assistance center selected by the Maternal and Child Health Bureau. Second, to establish capacity for training, technical assistance and quality assurance in the state, the three collaborating agencies will identify staff members who can travel to the national technical assistance center for intensive training. Third, as the screening program expands, teleconferences will be arranged through a contractor with the national technical assistance center to provide training for hospitals, audiologists, physicians, Part C and CSHCN service providers, local health departments and others.
EVALUATION: Evaluation of Illinois' UNHS will be based on the achievement of program objectives. The three collaborating agencies and the Advisory Committee will use the number of hospitals participating in the screening program, the number of newborns identified with hearing loss, the number of newborns who receive a diagnostic evaluation by 3 months of age and the number of newborns with diagnosed hearing loss who are enrolled in either Part C or CSHCN services by 6 months of age to evaluate the effectiveness and efficiency of the UNHS program.
TEXT OF ANNOTATION: Currently, fewer than 25 percent of Illinois' newborns are tested for hearing loss and hearing loss is typically not identified until children reach 6 months of age. Illinois' Universal Newborn Hearing Screening program will ensure that all newborns are screened for hearing loss prior to hospital discharge, that those suspected of hearing loss receive a diagnostic evaluation by 6 months of age and that those with confirmed hearing loss are enrolled in a medical home through the Part C Early Intervention program or the Children with Special Health Care Needs program by 6 months of age. A network of 67 hospitals have expressed immediate interest in conducting newborn hearing screening. Screening will be expanded to include all 160 of Illinois' birthing hospitals by the end of the project's third year. Screening, reporting and follow-up procedures for newborns with suspected hearing loss will be integrated with similar efforts to track infants suspected of having a metabolic disorder. Project activities will focus on training for hospitals, audiologists, physicians, Part C and Children with Special Health Care Needs service providers and public health nurses; follow-up technical assistance with hospitals and maintenance of the tracking system.
KEY WORDS: Universal Newborn Hearing Screening
Project Narrative
1. Purpose of the Project
2. Organizational Experience and Capacity
Three state agencies are collaborating on the administration of the Universal Newborn Hearing Screening Program: the Illinois Department of Human Services (DHS), the Illinois Department of Public Health (IDPH), and the University of Illinois at Chicago Division of Specialized Care for Children (DSCC). These three agencies are presently responsible for all of the components required for a newborn hearing screening program. DHS is responsible (under a new state law, described below) for the development and operation of a universal newborn hearing screening program. IDPH is responsible for a universal newborn metabolic screening program that will be the basis for tracking children with hearing loss through diagnosis and referral for on-going medical care. Children with a diagnosed hearing loss may be eligible for the Part C Early Intervention program, which DHS administers, or for the state's program for Children with Special Health Care Needs, which is operated by DSCC. Additional information about each of the collaborating agencies is presented below, and organizational charts are included as Appendix A.
DHS distributes MCH Block Grant funds to DSCC to support the state's program for Children with Special Health Care Needs and toIDPH to support the Genetic/ Metabolic Screening, Oral Health, Vision and Hearing Screening and Childhood Lead Poisoning Prevention programs. These funds are distributed through interagency agreements that are described in the state's annual application for the Maternal and Child Health Services Block Grant.
The state's capacity to conduct newborn metabolic screening illustrates its ability to conduct universal newborn hearing screening. Currently, each hospital in Illinois submits newborn blood specimens to the IDPH laboratory for analysis. These results are reported in writing to the child's physician, and follow-up activities are initiated for each infant suspected of having a metabolic disorder. Follow-up activities continue until the results of a retest are normal or there is a definitive diagnosis. When retesting by the physician is not reported promptly, a referral is made to the local health department that serves the community in which the family resides. Local public health nurses attempt to locate families, arrange for retesting, provide information about the child's condition, and refer the family to additional resources for definitive diagnosis, treatment and on-going care. These activities are supported by an information system that maintains information about both normal and abnormal results, re-screening results and diagnostic information on every baby screened in Illinois; generates form letters and management reports for the follow-up process; and tracks treatment and developmental progress of children with a diagnosed condition.
DSCC employs nurses, medical social workers, and speech pathologists or audiologists in 13 regional offices located around the state. For families with hearing-impaired newborns, these professional staff members provide care coordination, referral to Early Intervention (EI) programs or other resources and, for those who are financially eligible, ongoing financial assistance for audiological services such as hearing aid evaluations, amplification systems, and surgical/medical services.
DSCC co-sponsors the Institute for Parents of Children who are Deaf or Hard of Hearing with IDPH, DHS, Illinois School for the Deaf and the State Board of Education. This is a week-long educational program for parents of children (ages birth to 5) who have a significant hearing loss. The Institute provides an opportunity for parents to learn about deafness and their child's individual strengths and needs as well as meet other parents who have children with hearing loss. At the conclusion of the Institute, parents meet with staff to discuss evaluation results and treatment recommendations and plan for the future.
The Part C Early Intervention program -- The Early Intervention (EI) program, authorized by Part C of the Individuals with Disabilities Education Act, is located in DHS' Office of Prevention. To be eligible for Part C services in Illinois, a child must be experiencing developmental delays in cognitive development; physical development, including hearing loss; language and speech development; psycho-social development; or self-help skills. Children diagnosed with physical or mental conditions with a high probability of resulting in developmental delays, are also eligible.
Families access the EI system through the Child and Family Connection agency which serves their local area. Twenty-four sites have been operating since the fall of 1997. These agencies provide intake, service coordination, assistance with eligibility determination and development of the initial plan of EI services needed by the child and family.
Early Intervention services are available statewide through a network of enrolled providers. These services include assistive technology devices and services; audiology, aural rehabilitation and other related services; developmental therapy; family training and support; health services; medical services for diagnostic and evaluation purposes; nursing; nutrition; occupational therapy; physical therapy; psychological, social work and other counseling services; service coordination; speech and language therapy; transportation and vision services.
Developmental evaluation, assessment, Individualized Family Service Plan (IFSP) development and service coordination are available at no cost to families. Ongoing EI services are authorized and provided in accordance with the eligible child's IFSP in the most natural setting for the child and family. Families may be assessed a fee for some ongoing EI services, based on ability to pay.
3. Administration and Organization
Overview -- The project will be overseen by a state-level project team comprised of key staff from the three collaborating state agencies. All three agencies will work with the statewide advisory committee authorized by the Hearing Screening for Newborns Act. Training programs for hospitals, audiologists and others will be arranged by a DHS contractor with oversight by the state-level project team. Each of these components is described below.
Establishment of a statewide advisory committee is required by the Hearing Screening for Newborns Act. The advisory committee will be co-chaired by the Title V Director at DHS and at least semi-annual meetings are planned. The specific persons and organizations (other than the collaborating state agencies) that have been appointed to the advisory committee include: two parents of hearing-impaired children; Family Voices (an association of parents of children with special health care needs); the Illinois Speech-Language-Hearing Association (an association of speech-language pathologists); the Illinois Academy of Audiology (an association of audiologists); the Illinois Educational Audiology Association (school-based audiologists); the Illinois Chapter of the American Academy of Pediatrics; the Illinois Academy of Family Practice Physicians; the Illinois Hospital and Health Care Association (with representatives from both public and private hospitals); the Illinois School for the Deaf in Jacksonville, IL; the Illinois Association of Public Health Administrators (administrators of local health departments); the Illinois Public Health Nursing Administrators Association (an association of local health department nursing directors); the Illinois Department of Public Aid's Division of Medical Programs (responsible for the Title XIX and Title XXI programs); and the Illinois State Board of Education. A list of the members is included as Appendix C.
DHS has existing contracts with several organizations to arrange and conduct training programs. The experience of two contractors is particularly relevant to the newborn hearing screening program, and either could be brought into the project. The Division of Continuing Education at Northern Illinois University in DeKalb, Illinois, provides on-line and postal conference registration services for the Division of Community Health and Prevention, as well as conference planning and distance learning services. Their distance learning capabilities include live web-casting, audio and video streaming and video conferencing. The Springfield Urban League conducts computer software training and satellite video conferencing for the Division of Community Health and Prevention. The Springfield Urban League has successfully conducted many statewide satellite tele-conferences and has the capability for live two-way audio and video feeds. No final decision has been made on which of these entities will become involved in arranging training for the newborn hearing screening program.
4. Available Resources
While none of the collaborating agencies received an appropriation to implement the Hearing Screening for Newborns Act, all three agencies have resources available to support the implementation of universal newborn hearing screening. These resources include staff, a network of 67 hospitals committed to implementing universal screening, a computerized tracking system, a management information system for MCH and Part C services, an established system for credentialing health care providers through the CSHCN program and the provision of health benefits coverage for low-income families. Each of these resources is described below.
DSCC uses the following general criteria to credential audiologists: a Master's degree in audiology and/or communication disorders from an institution accredited by the American Speech and Hearing Association; licensure as an audiologist in Illinois or in the state in which services are being provided; a minimum of two years of paid professional experience in working with the pediatric population; a patient caseload which is at least 50 percent pediatric patients; licensure as a hearing instrument dispenser if hearing instrument evaluations or fittings are being done; and evidence of professional liability insurance by an insurer licensed in the State of Illinois. For the newborn hearing screening program, audiologists are also required to demonstrate that they are capable of performing OAE or AABR evaluations.
DSCC and the Part C Early Intervention program jointly developed "Service Guidelines: Deaf or Hard of Hearing" This document discusses the potential for increased numbers of very young infants being referred to Early Intervention programs, summarizes the benefits of early identification and diagnostic evaluation and reviews eligibility for DSCC and Part C EI services. The manual was distributed to Child and Family Connection agencies and to Early Intervention service providers.
KidCare uses the benefit package and administrative structure developed for the Medicaid program. Inpatient newborn hearing screening is included in the Diagnosis-Related Group payment or per-diem payment for the newborn hospital stay. On an outpatient basis, audiologists or physicians who are not salaried hospital employees can bill for audiologic services. Current billing codes and rates include an "audiometric exam" (reimbursed at $38.57) and a "hearing aid exam" (reimbursed at $46.25). The addition of billing codes for newborn diagnostic testing is being considered. Hearing instruments are covered if medically necessary, and may be provided for both ears.
5. Identification of Target Population and Service Availability
Illinois' Universal Newborn Hearing Screening Program targets all infants born in Illinois hospitals offering obstetrical services. The "needs, special problems and barriers facing the target population" will be discussed in section 6, below. The "existing services and support available at the community, state, regional and/or national levels to support [the] project" were discussed in section 4, above.
6. Needs Assessment
The status of the state regarding screening, diagnosis and enrollment in Early Intervention and CSHCN services for newborns with hearing loss is as follows:
The strategies and resources that will be used at the state and community levels to address these needs are presented in section 10, "Project Methodology," below.
7. Collaboration and Coordination
The "existing and planned methods of collaboration and coordination with other relevant agencies, organizations, key public and private providers, family members, consumer groups, insurers, and other partnerships relevant to the proposed project" were presented in Section 2, "Organizational Experience and Capacity;" section 3, "Administration and Organization" (which includes a description of the advisory committee and its proposed membership); and section 4, "Available Resources" (which includes information on the use of state and national resources to carry out the training required to implement the program). Two parents of hearing impaired children and Family Voices, a family support organization, have been appointed as members of the statewide advisory committee. These consumers and consumer advocates were invited to review and comment on the application; their letters of support can be found in Appendix E.
8. Goals and Objectives
Goals -- The goals of Illinois' universal newborn hearing screening program are consistent with those of the Division of Services for Children with Special Health Needs' "National Agenda for CSHCN: Measuring Success," as illustrated below.
- Screening -- Illinois' newborn hearing screening program, when fully implemented, will ensure that all newborns will be screened for hearing impairment, a special health care need;
- Link to a Medical Home -- Each newborn diagnosed with a hearing loss that qualifies for services through the Part C Early Intervention program or the CSHCN program will be linked to a medical home through those programs.
- Health Insurance -- Eligibility for KidCare, the CSHCN program and the Part C EI program have been discussed in sections 2 and 4 of this application.
- Participation in Decision Making -- Consumers and child advocates have been appointed to the statewide advisory committee to ensure that families have the opportunity to participate in decision making.
- Organization of Services -- Illinois' universal newborn hearing screening program is organized for simple access. Children with suspected hearing loss will be enrolled in a tracking system that will ensure that the newborn's physician is contacted and informed of the possible hearing loss, and follow-up will continue through diagnostic evaluation and referral for on-going services. The CSHCN program will pay for diagnostic evaluations provided by credentialed audiologists without prior authorization. Following diagnosis, parents will be directed to the Part C EI and CSHCN programs.
Objectives -- The collaborating state agencies propose the following objectives to assess the effectiveness and efficiency of the newborn hearing screening program:
By December 31, 2002, 95 percent of infants born in Illinois hospitals that offer obstetrical services will be screened for hearing loss prior to hospital discharge.
By December 31, 2002, 95 percent of infants with a suspected hearing loss will receive a diagnostic examination by 3 months of age.
By December 31, 2002, 95% of the children diagnosed with an eligible hearing loss will begin receiving appropriate Early Intervention and CSHCN program services, including fitting for amplification devices, before 6 months of age.
Activities -- The activities that will be completed to accomplish each objective are described in section 10, "Project Methodology."
9. Required Resources
During the four-year project period, funds will be used to employ state-level staff and to provide comprehensive training to service providers. These purposes are consistent with the objectives identified in the summary at the end of section 6, above.
Grant funds are requested to support project staff at DHS and IDPH. At DHS, project funds will be used to support a project coordinator. This person's role will include overall, day-to-day management of the newborn hearing screening program, in collaboration with the partner organizations. At IDPH, funds will be used to support a clerical position to oversee follow-up of infants with suspected hearing loss. Financial support of this position will be divided between the newborn hearing screening grant and other agency funds. Job descriptions for each position can be found in Appendix F.
Grant funds are requested to support training programs for hospital personnel, audiologists, Part C EI service providers and CSHCN agency staff. As described in section 3, the training plan involves both the use of national training resources and the establishment of training, technical assistance and quality assurance capacity within the state of Illinois.
DHS assures that grant funds will be used only for the purposes specified in this application and that fiscal control and accounting procedures established by the Comptroller of Illinois will be followed.
10. Project Methodology
Structure of the Screening Program -- The 47 hospitals receiving grant funds to purchase newborn hearing screening equipment were allowed to establish their own protocols, as long as the hospital would:
The grant funds were awarded prior to the enactment of the Hearing Screening for Newborns Act. Lacking formal authority to require a specific protocol, DHS established these basic parameters for newborn screening, and referred applicants to the IDPH newborn hearing screening guidelines (Appendix G) and recent publications on screening procedures for further information. The Hearing Screening for Newborns Act has given DHS the authority to promulgate rules, and the advisory committee may recommend the establishment of a uniform protocol through the promulgation of rules.
Data and Tracking System -- CANTMIIS, the tracking software developed by IDPH for newborn metabolic and hearing screening, was described in section 4. Once installed, hospitals will use the CANTMIIS software to report hearing screening results via modem to IDPH. Prior to the installation of CANTMIIS software, hospitals will manually submit information to IDPH on each infant who has failed re-screening (failed two screening tests in the hospital), failed one screening but were discharged prior to the second screening, or who were discharged prior to any screening. Sample reporting forms are found in Appendix H.
Mechanisms for Audiologic Follow-up and Diagnosis -- The following steps are taken after a report is received by IDPH:
A form letter is sent to the infant's physician informing him or her of the abnormal test result. A list of DSCC-credentialed audiologists is included with the letter.
If a diagnostic report is not received within 30 days, the physician is contacted by telephone.
If a diagnostic report is not received within 30 days of the telephone call, a report is sent to the local health department serving the infant's place of residence. The local health department then contacts the family and arranges for diagnostic evaluation.
DSCC will pay credentialed audiologists or physicians who provide the post-discharge diagnostic testing without prior authorization. This testing will use either AABR or OAE procedures.
Referral to the Part C Early Intervention and CSHCN Programs -- Referral to DSCC and the Part C EI programs is initially made by the physician or the audiologist who performs the diagnostic evaluation. Further, the parents of an infant with hearing loss are contacted by staff from the nearest DSCC regional office to offer assistance with care coordination and, if financially eligible, ongoing financial assistance from DSCC. Prior authorization from DSCC is required for ongoing audiological services such as hearing instrument evaluations and provision of hearing instruments. DSCC also informs families about the Part C EI program and assists the family with a referral if needed.
- CSHCN Program Eligibility -- Medical eligibility for the CSHCN program for hearing impairment includes a hearing loss of at least 30 decibels or greater at any two of the following frequencies: 500, 1000, 2000, 4000, and 8000 Hertz; or a hearing loss of 35 decibels or greater at any one of the speech frequencies (500, 1000, and 2000 Hertz) involving one or both ears. If medical eligibility is met and the family needs financial assistance to obtain appropriate specialty care for the child's condition, financial eligibility criteria must be met. The financial guidelines were recently changed to allow eligibility for families with total income up to 285% of the federal poverty level. Since many insurance companies do not cover hearing instruments and related supplies or cochlear implants, DSCC is often the only resource for families needing these services. Additionally, DSCC covers otologic and audiologic care for financially eligible children.
- Medical Home -- Although DSCC has encouraged families to have a primary care provider (PCP) in addition to the necessary specialists, the program has not previously used the PCP as the managing physician. DSCC is now embarking on a year-long pilot with a limited number of PCPs experienced in providing comprehensive care for CSHCN to identify the issues that need to be resolved in order to implement the Medical Home concept statewide in the DSCC program. The pilots are planned for different types of practices, such as private urban, private rural, urban Federally Qualified Health Center (FQHC), and rural FQHC, and will include both pediatricians and family practice physicians as PCPs. The goal is to eventually ensure that all CSHCN in the program, including infants and children with hearing impairments, have a medical home.
- Part C Program Eligibility -- Infants with a bilateral hearing loss of 40 dB or more are eligible for Part C EI services. Families pay a maximum of $100 annually for services, along with a proportion of the cost of hearing instruments.
Plan for Professional and Public Education --
- Professional Education -- The training plan has three components. First, a series of large-scale training programs will target the 67 hospitals that are currently conducting universal hearing screening or have received funds to implement a universal screening program, audiologists, physicians, federally-qualified health centers and Part C EI service providers. The training programs will be arranged by the state-level project team and will be conducted by the national technical assistance center selected by the Maternal and Child Health Bureau. Department staff contacted both the Marian Downs Center at the University of Colorado and Dr. Karl White at the University of Utah during the development of this application and both expressed their willingness to travel to Illinois and conduct these training programs. Second, to develop the state's capacity for on-going training, technical assistance and quality assurance, the state-level project team plans to identify staff members from their respective agencies who can travel to the national technical assistance center for intensive training. Third, as the screening program expands, teleconferences will be arranged through Illinois' training contractor with the national technical assistance center to provide training for hospitals, audiologists and others. Each training program will include parents of hearing-impaired children and hearing-impaired adults to ensure that providers are aware of the impact of hearing loss on the family and the importance of family-centered care.
During the project's first year, emphasis will be placed on the first two components of the training plan. The training of the state technical assistance team is planned for the first quarter of the project, and will be scheduled at the earliest convenience of the national technical assistance center. Following training, team members will begin working one-on-one with the current hospital network to improve their screening and reporting procedures. One-on-one follow-up with individual hospitals will continue throughout the entire project to ensure that screening is routinely conducted. The large-scale hospital and provider training programs are planned for the second, third and fourth quarters of the project's first year. The training will be conducted regionally, with most of the training opportunities occurring in the Chicago area, since half of the hospitals in the current network are located in Cook County or one of the surrounding counties. Separate training programs will be conducted for each external audience (hospitals, audiologists, physicians), while state-level staff will conduct training programs for EI service providers (including Child and Family Connection agencies) and local health departments. The content of these training programs will be developed by the state-level project team, interested persons from the advisory committee and the national technical assistance center.
During the project's second and third years, training will focus on expansion of the screening program to additional hospitals. Training will include programs for hospital personnel, as well as the physicians and audiologists affiliated with these hospitals. The content is expected to be similar to the training offered during the first year. This training may be offered by satellite link from the national technical assistance center. The deadline for universal screening required by the Hearing Screening for Newborns Act will fall during the project's third year, so statewide expansion must be completed during that year.
Training and technical assistance during the remainder of the project's third year and all of the fourth year will focus on continuing education for participating hospitals, audiologists, Part C EI providers, and other health care providers. This training may be provided by satellite link from the national technical assistance center or by state staff. The primary purpose for on-going training is to orient physicians, new hospital staff (in response to staff turnover) and audiologists who have initiated pediatric practice. Consistent with the development of other training programs, the content will be developed by the state-level project team in consultation with interested members of the advisory committee.
Detailed Project Activities Time Allocation Tables and Personnel Allocation charts for each year of the project are included in the Budget Information section of this application.
- Public Education -- Public education will be provided through written materials for parents. These materials will be distributed at the hospital to parents of children with a positive second screening test, by DSCC-credentialed audiologists and by pediatricians and family practice physicians. Materials from Maryland, Virginia and Michigan were reviewed in the development of a brochure for parents. The brochure will be published in the near future. The brochure and any other public education materials will be reviewed by interested providers and parents from the advisory committee.
CSHCN Program and Family Involvement -- The "mechanisms used to support the involvement of State Title V CSHCN programs and families in the project planning, implementation, and evaluation activities" were described in section 3, "Organization and Administration".
11. Plan for Evaluation
Evaluation of Illinois' universal newborn hearing screening program will be based on the achievement of program objectives. The data source or sources that will be used to measure each objective are described below.
By December 31, 2002, 95 percent of infants born in Illinois hospitals that offer obstetrical services will be screened for hearing loss prior to hospital discharge.
This objective has two parts. First, the state-level project team will monitor the number of hospitals that have initiated newborn hearing screening. Currently, 160 Illinois hospitals are licensed by IDPH for obstetrical services. This part of the goal will be achieved when all 160 hospitals are routinely screening. The target date was chosen to be consistent with the requirement of the Hearing Screening for Newborns Act.
Second, the state-level project team will continually monitor screening activity, comparing the number of infants screened to the total number of occurrent live births and comparing the number of infants with suspected hearing loss to the number of infants expected on the basis of published studies. The state-level project team expects that, when universal newborn hearing screening is fully implemented, about 5,000 infants each year will be identified with a potential hearing loss. Reports from the CANTMIIS system and screening reports submitted manually to IDPH will provide the data to measure the second part of this objective.
By December 31, 2002, 95 percent of infants with a suspected hearing loss will receive a diagnostic examination by 3 months of age.
The data needed to measure this objective will come from the CANTMIIS central database, where all infants with suspected hearing loss will be tracked until a diagnostic evaluation is completed. The proportion of infants with suspected hearing loss who receive a diagnostic evaluation by 3 months of age can be measured directly from the CANTMIIS database.
By December 31, 2002, 95 percent of children diagnosed with an eligible hearing loss will begin receiving appropriate Early Intervention and CSHCN program services, including fitting for amplification devices, before 6 months of age.
The information for this objective will be obtained from the CANTMIIS, Cornerstone and DSCC management information systems. Initially, measurement of this objective will require manual comparison of records among the data systems, matching the infants with a diagnosed hearing loss on CANTMIIS to the infants enrolled in the Part C system in Cornerstone or in the DSCC management information system. Since the number of records is expected to be modest (approximately 500 per year, or 42 per month), manual matching will be sufficient in the short term. The proportion of infants who are enrolled in either the Part C EI program or the CSHCN program by 6 months of age will be measured through this manual comparison.