MICHIGAN PROJECT NARRATIVE
I. Purpose of the Project
The purpose of this project is to expand, enhance, and refine Michigan's current voluntarily implemented universal newborn hearing and intervention system at the state and local levels in order to achieve goals set forth in the Year 2000 Position Statement of the Joint Committee on Infant Hearing endorsed by five national organizations. As delineated in Healthy People 2010, Michigan will increase the proportion of newborns screened for hearing loss by one month of age, promote audiologic and medical evaluation by three months of age for infants with positive screens, and promote enrollment in appropriate intervention services by six months of age for infants who are deaf or hard of hearing. During the four year project period, we will work to fully implement a sustainable statewide early hearing detection and intervention system including coordination of screening with the infant's medical home, diagnostic services, family support, and early intervention programming. The goal of this initiative is to prevent undetected or late-detected hearing loss which leads to delayed language and literacy development.
Between 1.4 and 3.2 per 1000 infants are born with a significant hearing impairment. (1-2) Thus, as many as 424 of 132,298 newborns in the state of Michigan during 1999 could have been born with a significant hearing loss. The average age of diagnosis of a hearing loss, without a program of universal newborn hearing screening, regardless of degree, and without identified risk factors, is 22 months. The average age of subsequent intervention is 28 months. (2) These averages were reflected for Michigan by an informal survey conducted by the Michigan Chapter of the Alexander Graham Bell Association. The average age of identification has decreased over the past two-three years but the current average of 14 months remains unacceptable. Permanent congenital hearing loss can negatively impact a child's language, literacy, social, and emotional development with lifelong implications. Research indicates that infants with congenital hearing loss who are identified early and who receive intervention services by six months of age have significantly better language outcomes than those identified subsequently. (3)
In addition to the factors of early identification and intervention relative to positive language outcomes, a high level of family involvement is also significant. (4)
In 1997 only five hospitals had implemented newborn hearing screening in the state. Michigan now has 91 (out of the 103 birthing hospitals) providing universal hearing screening to 111,068 (84%) newborns out of the annual 132,298 births (1999 birth statistics). By the end of 2000, it is anticipated that 101 hospitals will provide this service to 124,826 (94%) newborns annually. There are only two birthing hospitals representing about 4% of the annual births which have not indicated their intention regarding this initiative. Both of these facilities, do screen infants "at risk" for hearing loss with a physiological screen and they comply with the Medicaid policy to provide this service to all infants whose birth is Medicaid reimbursed. A copy of the Medicaid policy is found in Appendix A. Discussions will continue with these two remaining hospitals to develop early hearing detection and intervention (EHDI) programming.
II. Organizational Experience and Capacity
The initiative for the Michigan Early Hearing Detection and Intervention (MEHDI) programming began in 1996 under the Division of Children's Special Health Care Services (CSHCS) within which audiology services, the Hereditary Disorders Program, and the Newborn Screening Program were then located. The MEHDI data is linked to the database for the newborn screening program which provides the number of newborns (denominator) with which to compare the number of newborns receiving a hearing screen (numerator). The Michigan Department of Community Health (MDCH) has had a newborn screening program since 1965 when a reliable test for phenylketonuria (PKU) first became available. Public Act 14 of 1987 expanded the program and designated a central laboratory, added comprehensive follow-up medical management centers, and quality assurance.
MEHDI is now located within the Community Living, Children, and Families administration (CLCF) directed by Virginia Harmon who is also the Maternal Child Health Director for the state. This administrative unit has responsibility for all maternal and child health programming except the Children's Special Health Care Services Plan which is now within the Medical Services Administration (Michigan's Medicaid program) and the Supplemental Food Program for Women, Infants, and Children (WIC) which is a separate administration. The DFCH has the capacity to work and develop this program as it is also manages the lead screening, school-based hearing and vision screening services, oral health, immunizations, Maternal Support Services/Infant Support Services as well as numerous other initiatives concerned with maternal and child health. Mostafa Aswad, consultant who is responsible for assuring cultural components regarding Arab-American cultural and language differences, is also part of this Division. Lisa Cook-Gordon, Early On®Michigan (Part C of the Individuals with Disabilities Act) liaison with the Michigan Department of Education which has the lead for Part C is also placed in this unit.
III. Administration Structure
The proposed MDCH project will be conducted by the MEHDI Program within the DFCH. The project will depend upon cooperation across administrations, bureaus, and departments indicated in the following chart. An organizational chart is attached in Appendix B. Further description is in the following table.
| MDCH
Community Living, Children and Families Administration |
The Deputy Director is Virginia Harmon who is also the state Title V MCH Director. Ms. Harmon is responsible for administration of most MCH programming through the Division of Family and Community Health (DFCH) directed by Douglas Paterson as well as Community Mental Health Services for Children. The Hereditary Disorders and Newborn Screening Programs are also located within this unit in the Program Administration and Consumer Resources Division directed by Doris Gellert. |
| Community Public Health Administration | This unit is administered by David Johnson, MD, pediatrician, who also serves as chief medical executive for the MDCH. Dr. Jacquelyn Scott directs the newborn screening laboratory in the Bureau of Laboratories. The Bureau of Epidemiology is directed by Dr. Matthew Boulton in which Dr. Bao-Ping Zhu, the state MCH epidemiologist is located. The Division for Vital Records and Health Statistics is directed by Dr. Carol Getts. |
| Medical Services Administration | The Medical Services Administration (MSA) is responsible for administering all aspects of the Michigan Medicaid Program. CSHCS Plan Division is located in MSA and is directed by Jane Finn. This division includes the Parent Participation Program and the Family Support Network. The Office of Medical Affairs co-directed by Drs. George Baker and Giovanino Perry provides physician consultation services to MSA, CSHCS and other programs such as MEHDI. |
|
Department of Education Special Education and Early Intervention |
The Department of Education serves as the lead agency for Michigan's early intervention system, Part C-IDEA, which is called Early On®Michigan. An interagency agreement shared by MDE, MDCH, and the Family Independence Agency (social services) assures collaboration in the administration of this program. Lisa Cook-Gordon, MA, serves as liaison between MDCH, the Early On®Michigan system, and local community representatives. A copy of the cover and signature pages of the Interagency Agreement are included in Appendix C. This is an extensive document that covers eligibility definitions, procedural safeguards, and descriptions of the participating agency responsibilities. This agreement is currently in process of revision. The MDCH now includes what was public health and mental health in the past as well as Medicaid. |
Advisory function to the Michigan Department of Community Health for maternal and child health issues is currently provided by the Community Living, Children, and Families (CLCF) Advisory Committee which will be apprised of MEHDI activities toward enhanced program development. In addition, a review team specific to EHDI function will be developed by April, 2001 including, but not limited to, representation from families, deaf and hard of hearing consumers representing Deaf Culture and an oral-auditory or total communication language approach to stimulation, hospital nursing, screening, and administrative personnel, physicians, audiologists, speech-language pathologists, early interventionists, genetics counselors, public health nurses, Hispanic, Arab, and African-American cultures, CSHCS, and special educators for children who are deaf and hard of hearing. A description of the CLCF committee and the proposal for the MEHDI Review Team are in Appendix D.
IV. Available Resources
4.1 MDCH Support
Within the MDCH, there are many staff who will provide expertise to program development. Staff in place to assist with the collaborative program development are noted below.
The principal investigator for this project is Douglas Paterson, MPA, Director of the Division of Family and Community Health (DFCH), who has more than 20 years of public health managerial and administrative experience. Mr. Paterson is responsible for the Michigan Early Hearing Detection and Intervention Program and the other maternal and child health programs in the Division.
Elise Dimon, MS, CCC-A, FAAA, Coordinator of MEHDI within DFCH, has over 25 years experience as a clinical audiologist and experience in newborn hearing screening. Ms. Dimon has coordinated and presented at educational conferences such as Healthy Mothers, Healthy Babies, Early On®Michigan (Part C of IDEA), the Michigan Alexander G. Bell Conference, the Michigan Speech-Language and Hearing Association, the Michigan Chapter of the American Academy of Pediatrics, the Michigan Association for Deaf, Hearing, and Speech Services Consortium Meetings, the Michigan Perinatal Society, Early Head Start and Head Start meetings, CSHCS regional meetings, WIC conferences, teacher consultant for the hearing impaired annual conferences, hospital in-services and Grand Rounds, hospital and public health nursing forums, developed program materials and publications, and has developed and maintained contacts with partner organizations and agencies. She also has extensive knowledge about services covered via Medicaid and the CSHCS Plan and has previous experience in Michigan's mandated school hearing screening program.
Katherine McGrath-Miller, MA, is director of the Data, Evaluation, and Surveillance Unit in the Division of Family and Community Health. She is the chairperson of the Maternal and Child Health (MCH) Data Workgroup and coordinates MCH programming with the Epidemiology Division. Ms. Miller has worked in several MDCH programs over the past fifteen years and has considerable skill in collaboration and intra-departmental communication. Ms. Miller's role in this project will be to assure the collaboration with appropriate databases to ensure that MEHDI goals and objectives are attained.
William Young, Ph.D. currently directs the Hereditary Disorders and Newborn Screening Unit and has been with the department since 1979. His experience includes thirty years of public health genetics and newborn screening program development. He serves as co-investigator with the Deputy Registrar for Michigan's cooperative agreement with the CDC for enhanced state-based birth defects surveillance and provides oversight to several aligned programs, including the HRSA/MCHB Planning Grant for Infrastructure Development.
Glenn Copeland, Deputy Registrar, is director of Vital Records and Health Data Development Section in the Division of Vital Records and Health Statistics. He has been with MDCH since 1973 and has extensive experience in the development and management of public health data. Mr. Copeland has developed data linkage and matching routines for numerous applications for recent pilot studies to match the Birth Defects Registry (BDR) cases with Department of Education, Early On data files as well as newborn screening with birth certificates. Infants with confirmed hearing loss are currently being linked to the BDR and it is anticipated that further linkage with MEDHI and the metabolic screens to birth certificates will be forthcoming. A part-time statistician is also assigned to working on this aspect of the program development as part of MDCH's CDC cooperative agreement. JiQiang Xu is a staff statistician assigned to data integration functions for EHDI.
Bao-Ping Zhu, MS, PhD, MD, the State Maternal and Child Health Epidemiologist in the Epidemiology Services Division, is involved with numerous MCH projects and will provide epidemiological expertise to this project. Dr. Zhu is a CDC epidemiologist under contract between CDC and MDCH. Copies of biographical sketches are included in Appendix E.
As a result of a recent CDC Cooperative Agreement award, MEHDI will soon be hiring a full-time public health consultant to perform follow-up coordination for infants with positive status from the newborn hearing screen. The full time capacity is expected to increase follow-up diagnostics and intervention services within anticipated time lines (described on p. 1) and subsequent reporting to the MDCH database regarding the outcome information. Additionally, data coding work for the hearing elements of screening, diagnostics, and intervention will be covered by the CDC Cooperative Agreement. A more comprehensive discussion on the planned enhanced data and tracking system is included in the table in Section VI. A copy of the award letter is in Appendix F.
There are a number of other individuals who have shared information and will provide continued expertise to this project. Jacqueline Scott, DVM, PhD, is director of the Chemistry and Toxicology Division which encompasses the newborn screening laboratory. Dennis Dodson, MS, manager of the Population and Provider Data Unit within Vital Records is directly responsible for the daily management of the BDR. He has considerable statistical expertise and experience with the broad issues related to data management and quality assurance and has staff with expertise in abstracting. Lisa Cook-Gordon, MA, Early On®Michigan liaison in the Division of Family and Community Health, has worked closely with MEHDI and will lend assistance to assuring further collaborative efforts with the Michigan Department of Education.
The Children's Special Health Care Services Plan (CSHCS) is also a resource to all families who have a child with hearing loss. Eligibility is relative to diagnosis, not financial status. CSHCS is a well-utilized resource in Michigan for hearing services relative to the extensive coverage that is available. Other aspects of collaboration with CSHCS are described in Sections V, VI, and VII.
At this time, physical space is adequate for staff as housed within the MDCH, Baker-Olin West complex. Office space, copy machine and facsimile accessibility are available. The program currently has two desk-top computer systems for the Program Coordinator and the data coding function.
4.2 State and Regional Support
The Michigan Association for Deaf, Hearing, and Speech Services (MADHS) is a Michigan-based consortium of advocates, providers, consumers, and families who meet monthly regarding a wide range of issues for people who are deaf and hard of hearing. A sub-committee for infant hearing also meets and provides input to MDCH regarding EHDI. Listings of consortium members and sub-committee members are contained in Appendix G. Currently, the sub-committee in conjunction with volunteer professionals and families is assisting with the development of state guidelines for screening, audiological and medical assessments, genetics referral and evaluation, and intervention services. The MEHDI Review Team previously described in Section III will be comprised of many of the same individuals who have currently volunteered to work on guideline development and who are already members of the MADHS Sub-committee on early hearing identification and will also collaborate on the development. It is anticipated that the guidelines will be available for dispersement by October, 2001. Currently, best practices follow the American Academy of Pediatrics (February, 1999) and Joint Committee on Infant Hearing (June 2000) statements. The recommendations have been shared with providers as they have become available. These national statements as well as those developed by other states such as Colorado, will serve as the basis for Michigan's development. It is also anticipated that work with the CDC cooperative agreement will merge pertinent recommendations.
The Carls Foundation, a philanthropic Michigan based organization with special interests in speech-language and hearing related issues, has also provided mini-grants for partial support of audiological screening equipment to hospitals to initiate EHDI programs. In the initial period of program implementation, CSHCS and Early On®Michigan had also provided similar mini-grants that were administered through the Michigan Health and Hospital Association. These mini-grants have served as a major impetus to hospital-based screening implementation in this state.
The Michigan Health and Hospital Association has also played an integral role in assisting with program development through their work in promoting the service to member and non-member hospitals alike and developing a best-pricing arrangement for screening equipment with vendors for the state during 1998-99.
4.3 National Support
Michigan was one of the 19 states working collaboratively with the Marion Downs National Center for Infant Hearing which has helped with needs assessment and ongoing and up-to-date information regarding issues in early hearing detection and intervention (1997-2000). Christine Yoshinaga-Itano, Ph.D. and Arlene Stredler-Brown, M.S. have both presented at statewide training conferences regarding early language intervention services. Karl White, Ph.D. of the National Center for Hearing Assessment and Management (NCHAM) conducted a conference on beginning newborn hearing screening programming during our first year of implementation. We have also fully appreciated and utilized the HRSA/MCHB guide, Implementing Universal Newborn Hearing Screening Programs. At this time, Michigan's program looks forward to continued cooperation with NCHAM as the MCH technical center awardee and Level II technical sites under the current CDC cooperative agreement awards.
V. Identification of Target Population and Service Availability
All Michigan newborns and their families will be included in this program unless there is a signed refusal for services. In 1998, 133,649 neonates were born; 79% of all infants were white, 18% African-American, 2% Asian and Pacific Islander, and less than 1% were native American Indian. There are an estimated ~274,500 (1999) Hispanic persons in Michigan many of whom are migrant farm workers; between 500,000-600,000 Arab Muslim and Chaldean persons reside primarily in the southeastern part of the state.
The state has one exceptionally large city (Detroit) and its densely populated surrounding area in southeastern Michigan. There are other urban areas including Grand Rapids, Lansing, Flint, Kalamazoo, Benton Harbor, Muskegon, Jackson, and Saginaw which are all located in the southern half of the lower peninsula. Only three larger communities of Marquette, Escanaba, and Houghton are in the upper peninsula of Michigan. Other than these centers, the state is very rural. While the state is largely rural, accessibility to diagnostic audiological service is not difficult.
The basic infrastructure for an effective EHDI system already exists in Michigan. The components to assure screening performance, diagnostic follow-up, and appropriate family- chosen intervention services are not, however, adequately coordinated.
1. Screening: There is no legal mandate for EHDI in Michigan, but 91 of the possible 103 birthing hospitals have implemented universal newborn hearing screening. Another 10 hospitals will initiate programs by the end of 2000.
2. Diagnosis: Michigan has several Perinatal Regional Centers that are also diagnostic audiology hubs. A map showing these locations is included in Appendix H. These centers are included among the 65 diagnostic audiology practices that have indicated capability to evaluate the very young infant. Many of the centers are also approved providers for Children's Special Health Care Services (CSHCS). A listing of audiological sites is in the Michigan guidebook, Services for Children Who are Deaf or Hard of Hearing: A Guide to Resources for Families and Providers. It is not incorporated in the appendices due to its length, but has been made available to Irene Forsman at HRSA for review. The Table of Contents is available in Appendix I. Michigan is fortunate to have a very responsive CSHCS Plan that covers diagnostics and other hearing related services for children from birth to 21 years. Medicaid also provides the same services to children and families under that program aligned with the wide array of coverage available under CSHCS. Beyond medical and audiologic diagnostic coverage, CSHCS, as payer of the last resort, will also cover hearing aids, aural habilitation services, and cochlear implants. Repair services are also fully covered under these programs. CSHCS coverage is determined by diagnostic eligibility; Medicaid is based on financial status. There are other private insurances available in Michigan that also cover hearing related services but repair is not often covered making enrollment in CSHCS a desired provision.
3. Early Intervention Services: Intervention services for infants identified with hearing loss are available in a variety of settings ranging from independent practitioners to universities and school systems. Early On®Michigan (Part C of IDEA) is available at the local level and provides coordination of services for several categories including hearing loss.
4. Family Support: The CSHCS Plan has a statewide parent support organization entitled Family Support Network. There are three regional coordinators for the state who function to assist families with information on choices in the care of their child with special needs. MEHDI is working to try to develop a sub-category of this network specific to hearing loss. There is possibility of developing a Michigan chapter of Hands and Voices (www.handsandvoices.org) to meet the specific needs of families with children who are deaf or hard of hearing. Mary Marin is the director of the Parent Participation Program in CSHCS that coordinates with the Family Support Network. Other localized Michigan family networks will also be investigated in order to develop a possible collaboration and statewide network.
5. Data Collection and Analysis: As noted in Section IV, this project will have the support of various MDCH personnel to assure appropriate data collection for screening, diagnosis, and intervention services. The MEHDI database has been operating in conjunction with the newborn screening database (metabolic screens) since June 1, 1997. There are further plans to upgrade and enhance the status of this segment of the programming and is further described in Section VI of this document.
Although second quarter 2000 statistics revealed that 91 hospitals screened for hearing 78% of the infants born during that quarter, it appears that many hospitals are still struggling with connecting babies to the primary care physician who will care for the infant. Audiologists are still slow in providing diagnostic statements on hearing sensitivity and appropriate referrals to aligned services. Support for families of diverse cultural backgrounds and/or language differences is a noted concern. And, primary care physicians who may not yet have had an infant with a positive hearing screen within their practice remain less than knowledgeable about referral responsibilities and resources.
Michigan has strong support for the concept of universal newborn hearing screening, but there appears to be continued weakness in follow-up strategy assurance in communities. Follow-up in the Detroit area due to the diverse demographics and larger number of referrals occurring in this area has been a challenge. Often the primary care physician is not identified on the blood specimen card, infants' names tend to change quite frequently, and families tend to move leaving no forwarding number or address. The cultural and language diversity is also a challenge in communication.
The MEHDI will continue to collaborate and enhance collaboration with Early On®Michigan (Part C of IDEA), the Family Support Network of the CSHCS Plan, Michigan Chapter of the American Academy of Pediatrics, family practitioners, university training programs in Michigan for medical, nursing, early childhood intervention and audiology students, statewide organizations for Hispanic and Chaldean and Arab American citizens where contact is feasible at the Arab Cultural Center for Employment and Social Services, and the Arab-American and Chaldean Council and the Office of Minority Health within MDCH, the Michigan Association for Deaf, Hearing, and Speech Services representing a wide array of agencies relating to deaf and hard of hearing, as well as national technical centers such as NCHAM and MDNC.
VI: Needs Assessment
During 1996, MDCH, CSHCS conducted a survey to assess newborn hearing screening activities in the state. Only five hospitals were performing universal screening in 4 out of 83 counties. The 22 hospitals with neonatal intensive care units (NICU) were providing a physiological test (auditory brainstem response) for newborns at risk for hearing loss determined by a risk factor paper screen; some hospitals were performing the physiological evaluation for all infants in the NICU. There was interest in hearing screening program development in 70 additional hospitals.
While participating in the Colorado grant award under MCHB, a needs assessment survey for the areas of screening, audiologic evaluation, and intervention service was distributed by MDCH using the questionnaires developed by the MDNC. The results of the surveys have assisted the state in identifying existing resources, strengths, as well as unmet needs. Hospitals with programs were identified as was confirmation of continuing interest as noted via our own survey. Audiological data showed that even though facilities are accessible and had a willingness to evaluate very young infants, in reality, few audiologists had experience in performing an adequate diagnostic evaluation and even fewer had experience in fitting appropriate amplification on very young infants. Teachers of the hearing impaired and early interventionists expressed a need for enhanced skills in working with the very young infant and the family.
MEHDI has also done extensive work in trying to develop a fail-safe partnership with Early On®Michigan when a newborn has a "refer" status from the newborn hearing screen. Several regional focus groups with local coordinators identified the need for enhanced understanding of the hearing referral system at the local level, the state level, assurance of informed consent and confidentiality, and the anticipated role of the Early On®Michigan local coordinator.
Feedback from families affected by the implementation of newborn hearing screening has been minimal. There have been anecdotal reports of pleasure that hospitals have received particularly from families who have had a child identified early and who are cognizant of the alternative (much later identification). One community hospital has published a "Letter from Miss Infant" thanking the hospital for the program while also noting the flaw in its protocol of having the family wait too long (3 weeks) for the follow-up rescreen prior to referral for diagnostic evaluation. A copy of the thank you note is available in Appendix J. There is need for more structured family feedback availability to assist hospitals with program refinement.
Data collected by MDCH for the MEHDI database is a rich resource available to determine program refinement needs. The maintenance of the database by individual infant for screen results, type of technology, follow-up from a "refer" status, diagnostic, and intervention information since June 1, 1997, has been a major source of indicators of success as well as for further program development needs. The reported data also measures hospitals' performance relative to the numbers screened, the number of newborns missed for screening and the reasons why, as well as the results of the screen. Having fields for re-screen information, diagnostics, and intervention services along with dates of service, has allowed the monitoring of follow-up function on the hospital level as well as what MEHDI needs to do to assure greater participation from all involved stakeholders. A sample reporting card, quarterly statistical report, written summary, and follow-up reporting page are included in Appendix K.
MICHIGAN'S STATUS IN STRATEGIC PROGRAM COMPONENTS
| Area | Current Status in Michigan |
| Operation of state-wide sustainable MEHDI program | 91 out of a possible 103 hospitals have implemented universal programming; by the end of 2000, 101 hospitals are anticipated to initiate programming. AABR, DPOAE, and TEOAE technologies are used. The majority of screening services are provided by nursing staff; however, a few hospitals use audiologists and volunteers but have also supplemented staffing with technical level personnel. Hospitals are asked to perform two in-hospital screens if a referral is resultant prior to referral to diagnostics. Beginning programs are working toward 100% screening coverage but many established programs still miss too large a percentage of infants
for various reasons, particularly, early discharge. Referral rates for approximately 30 hospitals exceed 4%; this is typically the case for the newer programs using DPOAE. Upon written consent of the parent to share information with MDCH, Early On, the primary care physician, and CSHCS, reports are sent to the MDPH-MEHDI database. Reporting is good and timely due to the linkage with the metabolic screen cards for which hospital staff have experience and realize the need for timely reception by MDCH. Most hospitals use the MDCH brochure (see Appendix L) to inform families of the newborn hearing screen; some use their own publication. Most hospitals regard the newborn hearing screen as a standard of care and signature for the service is part of the birth admission paperwork. Hospitals are expected to inform families about this screen and to obtain permission to share the information with MDCH, Early On, and CSHCS. The initiative is currently designated a medical |
| Operation of state-wide sustainable MEHDI program continued | research project under Michigan's public health code. Such status protects hospitals in their sharing of the information with the MDCH. Hospitals are requested to inform families and the primary care physician of infants with a positive screen result and obtain permission to share the information with MDCH, Early On, and CSHCS. MEHDI has plans to implement a project to assure better coverage of this aspect via a special notification form to MDCH which will include the family's permission for referrals. At this time, MDCH is also working with the Michigan Department of Education to assure follow-up services for infants with potential hearing loss. There is an Interagency Agreement between MDCH, MDE, and the Family Independence Agency (social services). A copy of the cover page and signature page is included in Appendix C. |
| Infants referred from screening programs will receive timely diagnostic evaluations. | While many infants have the benefit of timely referrals and a diagnostic statement of hearing sensitivity by 3 months of age, there is still a large proportion of infants who do not receive follow-up evaluation (40-50%). Hospitals with no audiology services have greater rates of loss to follow-up due to the geographical distance for further evaluation, but most are lost to follow-up in the Detroit metropolitan area despite greater availability of resources mostly due to lack of name and address changes. Training of hospital coordinators, audiologists, and primary care physicians is required to increase compliance in reporting. There is need to develop a strong local support systems to encourage this follow-up and reporting to the MEHDI database. The MEHDI program has a system of back-up contact with the primary care physician to request and note the primary role in assuring follow-up that s/he plays assuming parental consent to share information has been obtained. |
| Infants diagnosed with hearing loss will receive timely and appropriate early intervention. | MEHDI has been collaborating with Early On®Michigan (Part C of IDEA) to assure assistance with follow-up when the primary care physician is known. This is done as part of the Child Find segment of Part C and assures linkage with early intervention services. In addition, with parental consent, notice of a confirmed hearing loss is sent to Early On®Michigan local representatives within the time frames required by federal law. Audiologists and physicians need to further their knowledge of the program and responsibility to also refer families to this program. Feedback from local Early On®Michigan coordinators regarding intervention status is only in a developing stage at this time. Copies of draft training materials and communication forms are included in Appendix M. |
| All children will have a medical home where they receive health care services. | MEHDI sends notification of a "refer" status screen to the primary care physician noted on the blood specimen card. There has been incremental increase in responsiveness from physicians regarding their role in assuring follow-up evaluation and reporting follow-up from the diagnostic evaluation. Further evaluation of physician knowledge and response to this role is needed within our state. Protocols for screening, diagnostic audiology services, physician evaluation, genetics evaluation, and intervention are currently in process for development in collaboration with volunteers parents and professionals and the Michigan Association for Deaf, Hearing, and Speech Services. |
| All families will receive culturally competent family support. | Michigan is a culturally diverse state as noted above in Section V. Many other MCH programs with longer histories have succeeded in addressing this area, but to date, this has not been accomplished for MEDHI. While there is a brochure and guidebook produced for families, these have not yet been translated into either Spanish or Arabic. MEHDI will work closely with representatives from minority organizations to develop best practices for reaching families and developing literature in languages other than English. In addition, Michigan is fortunate to have an organization in Flint, State Services for the Hearing Impaired, which is beginning to provide video conferencing capacity for hospitals to provide interpreting services for the Deaf. This information will also be shared with Michigan birthing hospitals to assure appropriate services in communication. |
| Tracking follow-up and linking with other health data systems. | A statewide data management and tracking system is in place for all three components (screening, diagnostics, and intervention) and is linked with metabolic screening. With consent of the parent to share results of the hearing screen, the data is reported on a page of the blood specimen card. Demographic information is entered by the MDCH laboratory and hearing data by the MEHDI program. The electronic linkage of the databases allows the number of infants having the blood screen to serve as the denominator for the number of infants having the hearing screen or the numerator. This system is currently a manual system but in the future over the next five years, the database system will undergo several changes facilitating data entry by scanning with the ultimate goal being electronic entry at the hospital level for demographics and hearing screen results. (The blood specimens will continue to be sent to the MDCH by mail for analysis but linked electronically by a bar code for specimen matching.) This system will also link with Vital Statistics (birth certificates and birth defects registry) as well as a MDCH initiative called Vital Vision that will provide a systematic database for a number of public health/maternal and child health program statistics. At this time, however, there will be continued work to assure linking with CSHCS program enrollment, Early On®Michigan-Early Education Tracking (EETRK) System, and possibly other databases such as the Supplemental Nutrition Program for Women, Infants, and Children (WIC) and the Michigan immunization data base (MCIR). |
| Families and professionals will be aware of the importance of early identification of hearing loss and the relevant services available. | The MEHDI program coordinator has presented information to numerous groups and agencies as noted previously and will continue to do so with wider reach as more people and families become of aware of the service and the standard of care in Michigan birthing hospitals. MDCH, in collaboration with Early On®Michigan, has also published a brochure entitled Michigan's Community Hearing Screening Program (Appendix L) as well as a guidebook for families and providers, Services for Children Who Are Deaf or Hard of Hearing: A Guide to Resources For Families and Providers (text not available in appendix due to length but available from Irene Forsman at MCHB; a copy of table of contents in Appendix I.) |
| Adequate health insurance is available to cover EHDI services. | It remains unknown as to how many, if any, private insurance companies reimburse for newborn hearing screening and most hospitals cannot relate this information. Michigan Medicaid has a policy that became effective June 1, 2000, requiring birthing hospitals with 15+ Medicaid reimbursed births to provide a physiological hearing screen to infants prior to discharge, and for hospitals with less than 15 Medicaid reimbursed births, to refer them to an approved hearing center by one month of age. The in-hospital fee is included in the birth diagnostic related group (DRG); funding is available for the screen provided via the hearing center. There are currently two draft bills for EHDI within the state. HR 5522 has passed through the Health Policy Committee and the House of Representatives.
The Senate has introduced SB 1421. Current statistics indicate that 55% of all Michigan children have private insurance; 40% are covered by Medicaid. As of September, 2000, ~15,000 children are insured by MIChild, a Michigan program to provide services to those who do not either have private insurance or qualify for Medicaid. 5% of Michigan's children remain uninsured. Again, however, providers can refer those children to CSHCS to obtain coverage for diagnostics, or if hearing loss is present, to this service for specialty coverage. The CSHCS Plan is also incorporating primary care physician coverage in this system. |
In summary, program areas to be addressed within the state include: 1) improve the low percentage of follow-up on referred screens, 2) improve the low percentage of infants diagnosed with hearing loss after referral, 3) address the need to develop strong linkages with primary care physicians, and 4) better coordinate system components. Means to address these program weaknesses, will include: 1) continuing focus on education and training at all professional levels, 2) emphasizing and promoting families' awareness and understanding of the program during the prenatal period, and 3) developing and implementing protocols for the components of a quality program.
VII. Collaboration and Coordination
This project will focus on further coordinating the efforts of the divisions, departments, and agencies to expand and refine the services toward movement of a seamless system for infants and their families going through the EHDI system (screening and diagnostics, and intervention, when appropriate). Many of the collaborative relationships have previously been described in the preceding text of this narrative under Section III, Administrative Structure, Section IV, Available Resources, and Section VI, Needs Assessment. Further description of state agency collaborative partners is included in the following table:
| Hereditary Disorders Program
Program Administration and Consumer Resources Division |
Coordinates statewide services to provide Michigan residents with genetic diagnosis and counseling and information about birth defects and inherited diseases; regional network of clinical genetic centers; six pediatric genetic centers. |
| Newborn Metabolic Screening Program
Program Administration and Consumer Resources Division |
Targets seven diseases; follow-up is via FAX to primary care provider and appropriate medical management center; demographic information is collected on blood sample cards; analysis is done as state laboratory; all are mandated. EHDI is currently linked to this database and partially uses model of follow-up. |
| Birth Defects Follow-Up Program
Program Administration and Consumer Resources Division Health Statistics and Data Development Section |
Is currently being developed by the hereditary Disorders Program in collaboration with Birth Defects Registry (BDR) in accordance with a 3-year cooperative agreement with CDC; the proposed plan includes contacting families of children reported to the BDR to provide information on key services and resources. The BDR will be linked to the Michigan Department of Education Early On®Michigan database, Early Education Tracking System (EETRK) as well as other database linkages to monitor enrollment in intervention services. |
| Maternal Child Health Services
Division of Family and Community Health-Data Evaluation and Surveillance Unit |
Birth and death certificates are routinely linked to Vital Records; the MCH data workgroup, under the direction of Katherine McGrath-Miller, has identified linkages between multiple MCH databases such as WIC and Medicaid with birth certificates as the core system; the Maternal and Infant Health Advocacy Service (MIHAS) collects data on high risk mothers and infants and matches to birth certificate data. |
| Children's Special Health Care Services
Children's Special Health Care Services Plan Division |
Covers over 2500 diagnoses including hearing loss for children from birth to 21 years of age. Hearing aids, cochlear implants, repairs, and therapy services are available to children who meet diagnostic eligibility requirements regardless of financial status of the family. The program is transitioning to a managed care model under the direction of the Medical Services Administration within the MDCH. The concept of the medical home is stressed for children with special needs. This division also has a Parent Participation Program providing consumer representation in programmatic decisions and a Family Support Network. The FSN is a parent-to-parent support network and advocacy group. It is not categorized. Many specialty clinics throughout Michigan are funded including genetics, otolaryngology, and audiology clinics. This division uses the Surveillance Utilization and Review System (SURS) database which links Medicaid claims to provider enrollment and recipient eligibility. This program will also pay for diagnostic services after a failed hearing screen if no other mechanism is available. |
| Supplemental Nutrition Program for Women, Infants, and Children (WIC)
WIC Administration |
Administers the federally funded supplemental food program for women, infants, and children through the 50 local health departments throughout the state and other food vendors. Approximately 50% of all Michigan newborns are on WIC. Linkage between the birth certificate, death certificate, and the WIC database is being pursued. |
| Immunization
Division of Immunization Community Public Health Administration |
Provides perinatal, childhood, adolescent, and adult immunization services. In 1996, Public Act 540 directed MDCH to establish the Michigan Childhood Immunization Registry (MCIR) and mandated immunization reporting. The MCIR is designed for storing immunization status to increase immunization rates and decrease the number of vaccine preventable diseases. This system is linked across six regions. At this time, approximately 2000 primary care physician offices interact with this system which is linked to the birth certificate and WIC databases. The mandate limits the use of MCIR to immunization purposes only, but there is increasing interest in using MCIR as a model and foundation for a linked public health information system. |
| Division for Vital Records and Health Statistics | Is responsible for maintaining all vital records including births, deaths, marriages, divorces, and for developing demographic data from these records. The Vital Records and Health Data Development Section operates a variety of statistical and legal reporting systems (vital records registration, vital statistics, cancer surveillance, birth defects surveillance, paternity affidavits and actions, health resources surveys, induced abortion reporting). Operations encompass registration of events, nosological coding, training of data providers, quality control, managing access to records by researchers and other government agencies, and dissemination of statistics through standard and ad hoc reports based on data from the systems. The reporting of congenital hearing loss is mandated for reporting to the Birth Defects Registry. |
| Epidemiology Services Division | Conducts routine surveillance to document trends in mortality, morbidity, and costs for various chronic, infant, child, and maternal disease categories; evaluates the effectiveness of health programs and services. In recent years, there has been a significant increase of focus on maternal and child health epidemiology and coordination with the Division of Family and Community Health which has primary responsibility for MCH programming. Early On®Michigan |
| Michigan Department of Education | The Early On®Michigan program (Part C of the Individuals with Disabilities Education Act) is an inter-agency agreement program including the MDCH, MDE, and the Family Independence Agency; coordination of services is for children from birth to three years with developmental delay or predisposing conditions including chromosomal abnormalities/genetic disorders, neurological disorders, congenital malformations, inborn errors of metabolism, sensory disorders [including hearing loss], typical developmental disorders, severe toxic exposures, chronic illnesses and severe infections. Enrollment in this program is tracked through the EETRK; reporting is collected semi-annually by local districts. |
The number of collaborating agencies will expand as the work of this grant as well as the CDC Cooperative Agreement award continues. Letters of support for the project activities are collected in Appendix N.
Coordinated and linked services are to be provided in a high-quality and cost-effective manner. Parents and physicians are partners in the medical home to assure that services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally-competent. The identification of infants with hearing loss and the provision of appropriate and timely services to them and their families requires participation of many stakeholders and professional disciplines.
Planned methods of collaboration that will be instituted and/or refined and expanded as part of this project are:
VIII. Goals and Objectives
Despite Michigan's success in local hospital program implementation, there remains notable need for program refinement. Hospital based screening is only the first step in the process to identify infants with congenital hearing loss. Provision of follow-up diagnostic services and intervention services are paramount. Follow-up on "referred" status screens averages about 50-60%. Coordination of services with the child's medical home and referral resources for audiologic evaluation, family support networks, and intervention services requires refinement. To date only .1% of the infants screened have been diagnosed with hearing loss which is below expected averages, but is likely due to incomplete tracking and surveillance. There is also need to expand follow-up support for infants with a unilateral referred screen and provide education to families and providers regarding home and other category births since there are approximately 1100 Michigan infants born outside the hospital system. Later onset and progressive hearing loss will also be addressed via this project as well as the cooperative agreement award from the Centers for Disease Control and Prevention.
The overall goal is: To assure a sustainable, statewide, comprehensive, family-centered, culturally-competent, seamless, community-based system of services for early identification and habilitation for children who are deaf or hard of hearing. The project objectives are noted below:
|
Screening Objectives |
| 1) Increase to 95% the number of newborns screened for hearing loss before discharge
2) Reduce by 30% the number of hospitals with high refer rates in excess of 4% 3) Increase the identification of the infant's medical home for those with "referred" status prior to discharge with immediate notification protocol to MDCH established for those who have a bilateral referral to 99% 4) Increase the number of families and infants who return for follow-up after a failed screen to 99% 5) Increase the number of infants with diagnosis established by three months of age to 99% 6) Establish and implement a follow-up protocol for unilateral "referred status" hearing screens 7) Provide all families expecting an imminent birth with language appropriate knowledge about newborn hearing screening and milestones for speech and language development. |
|
Assessment Objectives |
| 1) Increase the expertise of pediatric audiologists for very young infant diagnostic and amplification services by 100% from baseline
2) Increase by 100% the number of audiologists and physicians responsive to meeting program goals and need for tracking from current status 3) Increase by 100% the number of pediatric audiologists and physicians aware of and referring to CSHCS and Early On®Michigan and other appropriate services from current status 4) Provide all Hispanic and Arabic families with children who are deaf or hard of hearing with materials in Spanish and Arabic. |
|
Intervention Objectives |
| 1) For all families with an infant or child who is deaf or hard of hearing, provide information to families on communication options
2) Develop at least one parent-to-parent statewide support group(s) for families having children who are deaf or hard of hearing 3) Train all Early On staff on issues specific to hearing loss and language development to assure appropriate coordination of services for this group. 4) Assure 99% of infants with hearing loss are enrolled in intervention by six months of age |
|
Project Implementation - Administration Objectives |
| 1) Hire appropriate staff
2) Develop and initiate quarterly meetings of the MEHDI Review Team 3) Assure collaboration with data tracking and surveillance activities occurring via the CDC Cooperative Agreement |
For activities related to the objectives noted above, see the Project Activities Time Allocation Table located in the beginning of this grant applications per instructions on p. 10 of the grant guidance.
IX. Required Resources
The MDCH, DFCH employs the staff as described in Section IV above, Available Resources, to provide guidance and support to this initiative with in-kind contribution. Space is available within the MDCH, BOW Building to house the staff. Resources that will be required for enhancement of the program include .4 FTE part-time office assistant staff to assist with general office duties including letters, scheduling meetings and workshops, assisting with faxing responsibility etc. A 1 FTE public health consultant is also needed to assist with local community focus activities on system development; a .5 FTE parent consultant is also required to assist with community system development and to implement a parent-to-parent statewide program specific to hearing loss. A .5 FTE graduate student assistantship program will be contracted to assist staff with activities pertaining to this project. Additionally, MDCH is requesting a .3 FTE funding of a Public Health Consultant Manager 13 position to coordinate all newborn hearing screening and intervention activities and supervise project staff. Position descriptions are available in Appendix P.
Monies will also be requested for the reprinting of the brochure and MDCH guidebook in English, as well as in Spanish and Arabic. Protocol cards will also be developed for physicians to assist with their responsibility in making timely and appropriate referrals subsequent to a "referred" status hearing screen. A hearing screening notification card for hospital usage is also being reviewed to assure families know that their child has had a newborn hearing screen.
To assist and encourage greater skill in evaluation of the very young infant, a mini-grant system will be developed for pediatric audiologists to obtain competency in working with very young infants in both diagnostics and hearing aid evaluation and fitting. Resources will be needed to develop and print a pre-natal brochure for families to discuss the newborn hearing screen, information about obtaining this service if a hospital does not provide it, as well as information regarding speech and hearing developmental milestones. A guide to assist families with informed choice in education for the infant will also be developed, printed, and distributed. Funding is requested to hold statewide or regional meetings for providers to define and assure that the system works from screen through intervention at the local level. Resources from this grant will be used to refine and enhance the existing Michigan MEHDI system. The Budget and Finance Administration has the responsibility for fiscal controls that are well established. The unit functions for the explicit purpose of assuring that all funds under the fiduciary responsibility of the Department are used for the funding source's specific purpose.
X. Project Methodology
The activities of the project will focus on:
10.1 Expanding Coverage of Screening to Michigan Newborns
As noted previously, it is anticipated by the end of CY 2000, that 101 out of a possible 103 birthing hospitals representing ~94% of annual births, will have implemented a program of universal newborn hearing screening. For the most part, this has been voluntary with the support of a mini-grant program to assist hospitals with screening equipment purchase. Newborn hearing screening is becoming a standard of care in Michigan and is the goal of the program to make universal newborn hearing screening reach 100%. There will also be focus on assuring that families opting for home/midwife births have the opportunity for a newborn hearing screen. Toward this end, information regarding the newborn hearing screen and available resources for the service will be developed and dispersed through midwifery organizations. Michigan residents born in borderland hospitals should also be assured the opportunity for a newborn hearing screen. Reciprocal arrangements for reporting information to responsible agencies will need to be coordinated with the neighboring states of Ohio, Indiana, and Wisconsin.
10.2 Improving the Quality of Existing Programs
The statewide data tracking and surveillance system provides excellent information regarding the areas in which hospitals and other agencies need to improve services. MEHDI has provided quarterly reports to each hospital and associated audiology providers for that specific hospital as well as statewide conglomerate statistics along with a written summary of program development, needs for improving functions, and EHDI program references on the state and national levels. When quarterly reports go out to the individual hospitals and they are not in compliance with stated goals especially "missed" infants for whatever reason and higher than expected referral rates (JCIH, AAP), note is made in general in the quarterly summary and further confidentially outlined for specific hospitals. Phone calls to coordinators are often made as well. During this project, it may be possible to offer hands-on consultation to supplement manufacturer training with local audiologists and/or other staff available at MDCH. The parent and community development consultants will be available and can offer this type of service to local communities as needed.
10.3 Improving the System for Referral and Audiologic Diagnosis
Tracking of information to MDCH has shown outcomes of follow-up occurring on the average of only 50%-60% of the time. That is, follow-up re-screen or diagnostic evaluation is only available for approximately half of all newborns with an original "referred" status screen. To date, MEHDI has only had the capacity to assist with follow-up assurance on infants with bilateral "referred" status. If providers do send in diagnostic results on infants who had a unilateral positive screen, it is on their own volition. Follow-up quality assurance will also include infants with a positive unilateral screen result during this project. This enhancement will be the responsibility of the follow-up consultant.
In order to develop a system that will increase follow-up capacity at the local level, MDCH will use the Community Consultant (PHC 10/11) who will work with local hospitals and key stakeholders to determine roles within that community to assure that the primary care physician or provider is identified correctly for each infant particularly those requiring follow-up.
The metabolic blood specimen card does have an area to report the primary care physician name, but often it is left blank, is erroneous, or names the hospital neonatologist or attending physician. To address this area of concern, we will implement a program similar to that of Mississippi. MEHDI staff will develop a draft form and ask hospitals to immediately obtain correct information from the parent regarding the correct primary care physician name, the name of the audiologist to whom an infant will be referred, and signature of the parent (release of information) to allow sharing the information and diagnostic results with the MDCH, MEHDI program, CSHCS, and Early On®Michigan. It is expected that the expediency of the report required may precipitate appropriate referral at the hospital level to the primary care physician and further assure that MDCH personnel can begin back-up to the primary care physician in a more timely manner as this information will also be FAXED to the MDCH database after the screen.
The MEHDI program will also try to employ other mechanisms to try to locate "infants lost to follow-up" via other resources serving this population such as WIC, the immunization registry (MCIR), Maternal Support Service/Infant Support Services, CSHCS, Maternal and Infant Health Advocacy Service (MIHAS), Early Head Start, local public health nursing, and other appropriate MCH programs. An issue that will need review and decision will include the confidentiality issue regarding the sharing of this information to locate infants. We will also continue to use local Early On coordinators to contact families to assure follow-up. Assistance with this function of Early On in specific relation to hearing issues has and will continue with educational materials and trainings for all local representatives assigned this task.
Another difficulty with diagnostic evaluation is that there is no protocol for a complete evaluation and timely and appropriate referrals. Specific development of audiologic and physician protocols for evaluation as well as for genetic referral is just beginning within Michigan in collaboration with the Michigan Association for Deaf, Hearing, and Speech Services. As previously described, it is anticipated that protocols for these areas as well as screening and intervention will be available by October, 2001. Models will be reviewed from other states and assistance will be sought via national technical centers such as MDNC and NCHAM as well as possible work via the current CDC cooperative agreement work groups also charged with certain aspects of such development. JCIH and AAP statement recommendations are currently used and will provide the basis for Michigan's development of guidelines.
As provider training and consultation is conducted, work with local hospital staff and community-based resource personnel (Early On®Michigan, CSHCS, public health nurses, teachers and teacher consultants for the deaf and hard of hearing, physicians, advocacy agencies, and third party insurers) will focus on improving each family's awareness of the newborn hearing screen and their understanding that there is a system for follow-up when indicated by a positive screen outcome. At the MEHDI program, monitoring of follow-up outcomes and linkages with CSHCS will be assessed. Presently, the monitoring function of CSHCS enrollment is done manually, but there is plan to upgrade this type of system review via the CDC Cooperative Agreement.
10.4 Linking Screening and Diagnostic Evaluations to Early Intervention Programs
There are federal rules for referring infants and children who are at risk for developmental delay or those with a diagnosis covered by Part C of IDEA. The Early On®Michigan Program is located in the Michigan Department of Education. Fulfillment of the Project Find component varies amongst regional areas. To assist with linking to early intervention, there has been work on defining the expected role of the local Early On®Michigan representative regarding audiological follow-up and intervention services. Draft forms to share with local personnel are being developed and training-the-trainer sessions will occur for adequate dispersement of important information. The initial training forms are located in Appendix M.
10.5 Improving Family Support
The MDCH in collaboration with Early On®Michigan has provided a brochure about hearing screening and the possible needed follow-up services. The majority of the hospitals are using this brochure, but there are others that have developed their own informational brochure. Review of the brochure was conducted via Early On®Michigan families and MADHS members, but there are lessons to be learned from the first printing. A second edition is needed with recommended changes and the information also needs to be made available in Spanish and Arabic for families. Likewise, the guidebook developed and previously mentioned has been well-received by providers. There is little or no feedback from families regarding the utility of the guidebook. It is anticipated that MEHDI will use planned questionnaires to monitor families knowledge of and comments about this resource. There has already been recommendation from providers to develop a brochure for families that can be distributed in pre-natal services and other programs that are utilized by families to assure wider knowledge not only about newborn screening, but the possibility of later onset or progressive hearing loss.
During the first year of this project there will be an assessment of families regarding their participation in the MEHDI program at all levels of the process (screening, assessment, and as applicable, intervention). Even though it is thought that additional and updated copies of the guidebook will be needed, there is also the possibility that a web page could be added to the MDCH website and the NCHAM website.
Recent research and information indicates that families with newly identified infants or children with hearing loss would appreciate the support of other families that have been in their own position relative to the choices that are required. There are individual county support groups in Michigan particularly within more metropolitan counties. These resources could be tapped to work collaboratively with the Family Support Network of CSHCS and the national group of Hands and Voices to develop a Michigan chapter. The parent and community development consultants to be hired under this project are resources to develop this aspect of the program.
How families feel about their insurance coverage in pursuing follow-up and their perspective of belonging or having a medical home will also be assessed as well the distinguishing factors between groups. The information will be shared with the Michigan Chapters of the American Academy of Pediatrics and Family Practitioners and administrators in the MDCH who are responsible for developing strategies to assure families are connected with a medical home.
XI. Evaluation Plan
11.1 Performance and Outcome Measures
The MEHDI statewide database will be used to analyze outcome data for the state as well as individual hospitals. The quarterly and annual reports will be analyzed for statewide, regional, and county variations as well as areas of strengths and weakness. Our MCH epidemiologist, Dr. Zhu and Katherine Miller, Director of the Data, Evaluation, and Surveillance Unit in the Division of Family and Community Health (DFCH) will collaborate in this analysis. In addition, hospitals will receive information on infants for whom re-evaluation data have not been obtained and technical assistance to reinforce the need to work with local physicians and families on assuring follow-up. Other providers such as audiologists and early interventionists and advisory committees will also receive feedback showing state attainment of the performance and outcome measures. The key measures of project success will be documentation showing statewide performance for the following criteria taken from the Joint Committee on Infant Hearing, the American Academy of Pediatrics, and Healthy People 2010:
Indicators for Quality Assurance
11.2 Process Evaluation
Process evaluation of the stated goal, objectives, and activities will also occur as itemized in the Project Activities Time Allocation Table in front of the text with budget as per instructions noted on p. 10 of the guidance.
11.3 Questionnaires
In order to assess the plans and activities of the statewide EHDI program, we will call upon the resources of the NCHAM and CDC national technical site Level II awardees and our own Parent Participation Program (CSHCS) and MEHDI Review Team (described in Appendix D) to assist us in developing consumer and health intervention and early intervention provider surveys regarding satisfaction and knowledge in the areas of screening protocol, assessment, early intervention, coordination of services, communication needs, and family support. Development of the surveys will also include persons of diverse ethnic and cultural backgrounds to assure appropriate queries. The surveys will be conducted during the initial, mid, and final years of the project period.
Onsite visits to 6-8 screening sites annually will be done selecting some with need for improved performance in screening and follow-up as well as some that have greater success in order to analyze and summarize what procedures and protocols make them exceptional. Information will be generally shared with other participating facilities.
1. Mason JA and Herrmann KR. Universal infant hearing screening by automated auditory brainstem response measurement. Pediatrics 1998; 101(2):221-228.
2 Yoshinaga-Itano, C. et al. Language of early and later identified children with hearing loss. Pediatrics 1999; 102:1161-1171.
3. Yoshinaga-Itano, C. et al. Language of early and later identified children with hearing loss. Pediatrics 1999; 102:1161-1171.
4. Moeller, MP. Early intervention and language development in children who are deaf and hard of hearing. Pediatrics 2000; 106: 1-9.