Project Title: Massachusetts Infant Hearing Linkage Project
Project Number: CDFA93.110ZZ
Principal Investigator: Deborah Alien, Sc.D., Director. Division for Special Health Needs
Project Director: Janet M. Farrell, Acting Director, Universal Newborn Hearing Screening Program
Telephone Number: 617-624-5957 Fax: 617-624-5990
Organization Name: Massachusetts Department of Public Health, Division for Special Health Needs
Address: 250 Washington Street, 4th Floor, Boston, MA 02108
Contact Person: Janet M. Farrell
E-mail: janet.farrell@state.ma.us
Project Period: Years: 4 (4/1/00-3/1/04) Current Budget Period: 4/1/00-3/31/01
Organizational Setting
The project will be set in the Department of Public Health, Bureau of Family and Community, Division for Special Health Needs. The Bureau is home to the state Title V program for Massachusetts; the Division houses the state's Title V Children with Special Health Care Needs program, and includes the Universal Newborn Hearing Screening Program (UNHSP) and the Hearing Aid Program for Children. The Division is also the state's lead agency for Part C Early intervention services. The Principal Investigator will be Deborah Alien, Sc.D., Director of the Division for Special Health Needs. The Project Director will be Janet M. Fan-ell, Acting Director of the Universal Newborn Hearing Screening Program. Massachusetts has participated as an approved grant state through the Marion Downs National Center for Infant Hearing.
Purpose
Massachusetts is well on its way to accomplishing the goal of universal newborn hearing screening. In 1998, the Commonwealth passed one of the nation's most comprehensive universal newborn hearing screening laws. The law, which gave rise to the UNHSP, requires screening of all Massachusetts infants prior to hospital discharge and mandates the Department of Public Health to oversee diagnostic follow-up. Since passage of the law, the UNHSP has established a multi-disciplinary advisory committee, promulgated hospital licensure regulations for universal newborn hearing screening programs, and established guidelines for hospital screening programs. The UNHSP is responsible for reviewing and approving hospital newborn screening protocols.
This project will enable the UNHSP to ensure early diagnosis-and intervention for infants that do not pass the screening. It will ensure, first, that every child diagnosed with hearing impairment has a medical home, and that the medical providers who care for these children have the information and assistance they need to coordinate comprehensive care. It will ensure timely referrals to Early Intervention and other service programs. And it will ensure that families have access to the additional support of a dedicated parent consultant, who is him or herself the parent of a hearing impaired child.
Problem
Late identification of hearing loss may result in delays in language, speech, social, cognitive, and emotional development. Research indicates that children with hearing loss who are not diagnosed in early infancy experience delays which have serious implications for educational attainment. While Massachusetts law now mandates universal newborn hearing screening, hearing screening is only the first step towards the goal of early developmental intervention. This project addresses the risk of delayed intervention by creating a system to track each infant who does not pass a screening, to ensure early diagnosis and entry into services.
Goals and Objectives
This project will address the following goals: 1) avert potential adverse consequences of hearing impairment by ensuring timely diagnosis and intervention for all children identified through newborn hearing screening; and 2) promote optimal developmental outcomes through access to a continuum of services that are family-centered. community-based, developmentally appropriate, coordinated and culturally competent. Key objectives are to ensure that: families of children who screen positive receive information and support throughout the diagnostic process; children identified through screening receive timely diagnostic follow-up; pediatric providers arc mobilized to assist families through the diagnostic process; children diagnosed with hearing impairment are referred to and enrolled in Early Intervention programs; pediatricians have information and resources they need to provide comprehensive care to children with hearing loss and their families.
Methodology
Project staff will use information downloaded from the state's automated birth data system to identify children who screened positive for hearing impairment. Phone contact will be initiated with each child's family; the pediatrician noted on each child's birth certificate will be contacted by mail about the test results. Families will be asked about referral to diagnostic centers. An appointment date will be ascertained from each family that reports having been referred; referrals will be provided to families who do not have appointments, these families will be recontacted to confirm that appointments were ultimately made. Data from diagnostic centers will be used to determine outcomes of testing. Program staff will recontact families of children whom the diagnostic centers report having identified with hearing loss. They will provide referrals to El and information about key resources and offer further follow-up by a dedicated parent consultant. The pediatricians of children diagnosed with hearing impairment will receive information packets including literature on hearing loss and child development, a resource guide, and materials related to benefits and services available for children with special health care needs in Massachusetts.
Evaluation
Process evaluation will be based on tracking of workplan milestones by the Principal Investigator and Program Director. Three outcome evaluation strategies will be employed. A sample of parents (of children who screened positive and were then diagnosed with hearing loss and children who screened positive and were found to have no loss) and a sample of pediatricians will be surveyed one year post-birth about their satisfaction with screening, diagnosis and follow-up. In addition, time from screening to diagnosis will be tracked for all children who screen positive to ascertain the percentage of children diagnosed within one and within three months of birth; El enrollment of children with hearing loss will be tracked (through the El database) to ascertain the percent referred within six months of birth. Birth hospitals and pediatricians will receive feedback on children in their caseloads who experienced delays in diagnosis or care.
Text of Annotation
Massachusetts DPH will build on the state's newly enacted universal newborn hearing screening law, using birth certificate data to track infants from screening, to diagnosis, to enrollment in Early Intervention. Parents and pediatricians will be contacted and provided with information and resources to promote follow-up and ensure that a medical home is established for every child with hearing loss. Early diagnosis and developmental services are intended to prevent adverse developmental affects of unidentified hearing loss.
Key Words
Universal newborn hearing screening, pediatric hearing screening, medical home, pediatric hearing loss
Project Narrative
Purpose of the Project:
This proposal seeks funding for refinement of Massachusetts' existing statewide Universal Newborn Hearing Screening Program (UNHSP). It is intended to build capacity of the UNHSP to carry out effective follow-up on all infants who do not pass hearing screening in the state. Approximately 4 babies out of 1,000, or 320 children per year, are born with hearing loss in Massachusetts. Without performing a newborn hearing screening, national and state experience indicates that many of these children would not be identified until as late as 2.5 years of age, placing them at high risk significant delays in both language and social development.
This project will to establish a follow-up system to ensure early diagnosis and access to intervention services for infants who do not pass screening and their families. As of 1998, Massachusetts law requires birth hospitals and birthing centers to screen all newborns and to provide results of screening to parent(s) or guardian(s). It mandates payment for newborn hearing screening by all payers, with the state as payer of last resort for un- or under-insured children (including those covered by ERISA-exempt plans). DPH is assigned responsibility for convening a broadly representative advisory committee and establishing regulations and guidelines for hearing screening. DPH is also mandated to certify centers with capacity to diagnosis newborn hearing loss. Thus the law creates a clear framework, with well defined fiscal and programmatic responsibilities, for universal screening and diagnosis.
The law does not, however, ensure follow-up beyond diagnosis. In fact, the framework for follow-up after discharge is less clearly defined than that for the initial screening. This project will address the lack of a framework for universal post-hospital tracking and intervention to ensure optimal developmental outcomes for children with hearing loss.
Project intervention in relation to a particular child will be triggered by data from the slate's automatic birth reporting system. The slate birth certificate will be revised to include screening results so that the birth data system can serve as the mechanism for DPH to track and follow-up with the family and medical home of each child in need of diagnosis and then, if diagnosed, of ongoing care. Project staff will work with families, diagnostic centers and each child's pediatric provider to ensure early diagnosis, provision of appropriate medical information and support to the family through the child's medical home, and timely entry into developmental services such as the Massachusetts Early Intervention Program. Project staff will also work with the statewide Early Intervention Low Incidence Coordinator (responsible for ensuring quality of services to children with low prevalence conditions) to ensure access to appropriate high quality services once the infant has been identified with a haring loss.
Anticipated benefits of this project will include: 1) assurance that audiological diagnostic evaluations occur prior to three months of age, 2) creation of a communications network among the UNHSP, parents, primary care clinicians, diagnostic centers, and Early Intervention programs to ensure access to appropriate intervention no later than six months of age, 3) enhancement of primary care, to ensure availability of high quality medical homes for children with hearing loss, and 4) provision of information and technical assistance to parents and clinicians to ensure access to insurance and other benefit programs which may be available to children with hearing loss and their families.
Organizational Experience and Capacity
In 1971. Massachusetts passed the first law in the nation that tracked infants with risk indicators associated with hearing loss. Since that time, Massachusetts has had a program that has worked with hospitals, families, primary care clinicians. Early Intervention programs, and others to ensure that infants and young children up to age three, and who meet risk indicators for hearing loss have access to appropriate audiological diagnostic testing. In recent years, the program has worked closely with the statewide Early Intervention Program and has included staff and parents in planning for the implementation of universal newborn hearing screening.
This program was required to establish a list of approved diagnostic centers in the state. The program staff worked closely with diagnostic centers on a variety of issues and held regular meetings. Members of this group became the Massachusetts Task Force on Early Identification of Hearing Loss. This Task Force played the lead role in lobbying to pass the Massachusetts universal newborn hearing screening law.
Massachusetts has established the Universal Newborn Hearing Screening Advisory Committee, which is a broadly representative committee required by the state newborn screening law. The Advisory Committee consists of parents, a deaf consumer, physicians (pediatricians, otolaryngolgist, ENT, and neonatologist), audiologists, teachers of the deaf and hard of hearing, nurse from a newborn nursery. Early Intervention, Massachusetts Speech and Hearing, Massachusetts Association of the Academy of Pediatrics, Group Insurance Commission, Massachusetts Health Maintenance Organization, Division of Medical Assistance, Commission for the Deaf and Hard of Hearing, and staff members from Department of Public Health related programs (Appendix E) This Committee has been key to successful implementation of the program to date. The Committee has selflessly worked at breakneck speed to pass hospital licensure regulations and guidelines for newborn screening programs. These documents will be used by hospitals and birth centers to write protocols for newborn hearing screening programs, which must be approved by the Department of Public Health. The Advisory Committee will continue to meet regularly as the program moves forward with full implementation and will assist the Department in evaluating the progress of the program.
Administrative and Organization
Massachusetts has a long history of having one of the finest Public Health Departments in the nation. The Governor of Massachusetts A. Paul Cellucci and the Massachusetts Legislature designated the Massachusetts Department of Public Health as the lead agency in implementing Chapter 243 of the Acts of 1998, An Act Providing for Hearing Screening of Newborns (Appendix F). The Massachusetts Department of Public Health's Commissioner, Howard Koh, MD, MPH and other Senior Staff in the Department have been actively involved in establishing the Advisory Committee and program planning and implementation since the inception of this initiative. The Department is dedicated to protecting, preserving, and improving the health of all the Commonwealth's residents and works to help all people reach their full potential for health.
The Universal Newborn Hearing Screening Program (UNHSP) is housed in the Bureau of Family and Community Health (Title V Program), Division for Special Health Needs.
The Bureau and the Division have many programs that collaborate with the UNHSP including: Early Intervention Program, FirstLINK, FamilyTIES, Hearing Aid Program for Children, Family Support Unit, and Special Medical Fund. These programs provide services, funding, home visits to families with newborns, educational materials, parent-to-parent support, information on public benefits. and other information.
The UNHSP Massachusetts Commission for the Deaf and Hard of Hearing, which is the advocacy arm of slate government for people that are deaf or hard of hearing, the UNHSP has had numerous joint meetings with staff from the Commission and has provided training and technical assistance to case management staff at the Commission that work with children. The UNHSP also works with the Group Insurance Commission and the Division of Medical Assistance (public Welfare agency). Each of these groups have designated a staff person that participates on the Universal Newborn Hearing Screening Advisory Committee.
Massachusetts has also participated as one of the grant states through the Marion Downs National Center on Infant Hearing. The UNHSP networks and collaborates with staff from the other New England states and other states in the nation. The Acting Director of the UNHSP is also the designated Director of Speech and Hearing Programs for State Health and Welfare Agencies for Massachusetts. The Acting Director remains informed 'about national trends and changes in technology by participating in conferences, trainings, conference calls, Internet, and through publications relative to hearing issues.
The UNHSP has promulgated Amendments to the Hospital Licensure Regulations (105 CMR 130.000) and Birth Center Regulations (105 CMR 142.000) Regarding Universal Newborn Hearing Screening Programs (UNHSP's) (Appendix G). These regulations require hospitals and birth centers to have a universal newborn hearing screening program in place in order to receive approval From the Department of Public Health to provide maternal-newborn care.
Available Resources
Resources available to the UNHSP and this project include technical supports such as printers, e-mail, telephone use, internet access, and graphic design staff, and technical staff that service the computers. There is also support staff available to assist with clerical activities. The Department has many database and surveillance systems from which the Project can draw information. This includes the Electronic Birth Certificate System, the EI MIS, and MassCHIP.This Project will have the distinct advantage of being housed on the same floor as the Early Intervention Program, the Hearing Aid Program for Children, and other Division for Special Health Needs Programs and will have direct access to collaboration with staff and educational materials. The UNHSP is also in the same Department as Health Care Quality, Registry of Vital Records, and the Bureau of Family and Community Health and will have the ability to access staff and information.
Identification of Target Population and Service Availability
The target population will include infants identified through the electronic birth certificate system that do not pass a newborn hearing screening, their families, and the infants medical home. This project will meet the need of establishing a follow-up system for infants by providing information and working in partnership with families and the medical home to coordinate appropriate diagnostic and intervention services early.
There are many problems and barriers that prevent infants from receiving appropriate follow-up. Results of a survey of Massachusetts birthing hospitals and diagnostic centers conducted by the UNHSP identified the need for multi-level coordination to develop a comprehensive tracking system. The survey indicated that in Massachusetts. 98% of women who have uncomplicated deliveries are discharged within 48 hours. During this lime period, mothers are inundated with information about the various screening procedures their infants have undergone. Prior to the implementation of UNHS regulations and guidelines, there was no consistency in the methodology for informing parents of screening results and in making recommendations for follow-up. Hospital staff have made it clear that, in general, they have no mechanisms to follow-up on children who do not pass the screening. As the public has become more aware of newborn hearing screening, parents have begun to call the UNHSP because they are unsure if their baby was screened and often are unaware of the results of the screening. Also, having a newborn brings many new challenges, and families that face economic hardship or have linguistic or cultural barriers and may have special challenges in receiving information about follow-up at the hospital appropriately. Infants born with special health care needs often have areas of primary care overlooked and it will be especially important to provide follow-up information to families with infants with special health needs because many of these infants will also be at higher risk for progressive hearing loss.
The existing services and support available to the project includes the leadership of this project by the Department of Public Health, the comprehensive state law that assures screening, and the regulations that must be met by the birth hospitals. Also, the Universal Newborn Hearing Screening Advisory Committee and the professional groups that participate and strongly support this initiative are a source of support.
Massachusetts law requires the MDPH to approve diagnostic centers for this initiative. The UNHSP is currently working with a sub-committee to write guidelines for these centers. This allows Massachusetts to have a cohesive group of audiologists that work together with the UNHSP to ensure that this initiative is a success. This group meets several times a year and has the capacity to bring statewide concerns about gaps in services to the UNHSP. A list of the current centers is attached (Appendix I) and each center will meet requirements of the Diagnostic Guidelines once they are completed and approved by the Advisory Committee. Staff of the statewide Early Intervention Program have been preparing for the initiation of newborn hearing screening program for some time. The Program hired a coordinator for Specialty Services in 1998 to work internally and in collaboration with educational and advocacy groups to improve the access to and quality of early intervention services for infants and toddlers who are deaf and hard of hearing. Ensuring parent choice in the selection of educational approaches has been fundamental to this effort and has included collaborative efforts among specialty service providers and early intervention programs across the state. Workshops and policy directives directed at clinical and administrative staff in early intervention have been implemented to ensure that children receive appropriate intervention when they are identified with hearing loss. The Massachusetts Early Intervention Program has offered a comprehensive, coordinated system of services for children with hearing loss since it's inception but has always been concerned about the numbers of children who were identified with hearing loss well into their language learning years. Staff of the Early Intervention Program will continue to work with staff of the UNHSP and this new project as they develop new program protocols and service models based on the unprecedented entry of young infants with hearing loss into the Early Intervention system. Massachusetts has supported full participation in the Early Intervention system for a broad range of eligible children. Services continue to be provided at no cost to families and children with any degree of hearing loss are eligible.
The Hearing Aid Program for Children is another support available to families with newborns with hearing loss in Massachusetts. This program pays for the complete cost of the hearing aid(s) package for financially eligible families.
Needs Assessment
In 1999, the Department of Public Health conducted a hospital and diagnostic center needs assessment using a tool designed by the Marion Downs National Center. The birthing hospital needs assessment was used to determine information about universal newborn hearing screening programs. 51 out of 54 hospitals responded, which accounts for 95% of the total estimated annual births. Sixty-three percent-of the 51 who responded were performing newborn hearing screening, and of these 91% were doing universal newborn hearing screening. Using this information and other information collected in the survey it was determined that approximately 85% of infants should have been receiving newborn hearing screenings by the end of l999. Focusing on babies that did not pass a hearing screening which is the target population for this project the following assumptions were made. If 85% of 82,000 infants were screened, the number screened would be 69,700. If approximately 3% of these infants did not pass a hearing screening the UNHSP and project staff would be following approximately 2,070 infants yearly. Ranges of percentages of children lost to follow-up are disparate and using an assumption of approximately 30% of those who do not pass and do not return for follow-up, the anticipated number of infants that would need intensive outreach and follow-up would he approximately 621 annually. This number will grow because hospitals are mandated to screen 100% of infants. The survey results also provided information that most babies are discharged within 48 hours, therefore leaving very little time for parent(s) and guardian(s) to absorb an incredible amount of information. Hospitals also have stated that once infants are discharged from birth hospitals, there is no means in which to follow-up infants that do not pass.
Results indicated discrepancies in how hospitals informed parents about the screening results and made diagnostic appointments for those who did not pass the screen. Geographical differences in accessibility of diagnostic services, cultural differences in perceptions about hearing loss and about connections to the medical community in general, language barriers that may impact on communication with parents, and the challenges experienced by multiple risk families all need to be addressed.
MDPH distributed a survey from the Marion Downs National Center to approved diagnostic centers and other audiologists. Information collected on the survey included: age distribution of children seen, services available at the facility, numbers of children up to 36 months with confirmed hearing loss in past year, estimated age of identification, referral sources, and other information. This needs assessment is being used to help write Diagnostic Center Guidelines, identify gaps in service, and gaps in services in geographic areas.
The existing strengths to carry out this project include the state law. regulations and guidelines that mandate screening. The Universal Newborn Hearing Screening Advisory Committee, which reflects the range of constituencies working on the implementation of universal newborn hearing screening in Massachusetts, supports the UNHSP in its effort to follow-up on newborns who do not pass a hearing screening. Fiscal accountability will be assured through the Department of Public Health's Administration and Finance Unit, which has the responsibility to monitor numerous Federal and State grants.
Collaboration and Coordination
The Universal Newborn Hearing Screening Program has demonstrated ability to work with a broad range of consumer and professional groups. The enthusiasm and commitment of the Universal Newborn Hearing Screening Advisory Committee is documented in the support letters enclosed. Collaboration with the Massachusetts Commission for the Deaf and Hard of Hearing and EI has yielded two joint brochures for families with children with hearing loss. EI has now. dedicated a session of its provider training program to intervention for hearing loss with increasingly young children. EI also supports an in-home family sign language program through the Massachusetts State Association for the Deaf. The Massachusetts Hospital Association has worked closely with DPH in the implementation of the universal newborn hearing screening law sending out alerts to the hospitals and convening a forum at which DPH staff presented the new responsibilities and requirements of universal newborn hearing screening law and regulations. Staff have met and consulted with the Group Insurance Commission, the state Medicaid program, the Massachusetts Organization of Health Maintenance Organizations, and the state's Division of Health Care Finance and Policy on the Financing of this initiative.
Goals and Objectives
Goals
This project will address the following goals:
1) Avert potential adverse consequences of hearing impairment by ensuring timely diagnosis and intervention for all children identified through newborn hearing screening; and Promote optimal developmental outcomes through access to a continuum of screening, diagnostic and intervention services that are family-centered, community-based, (sic).
This section provides a narrative description of the project's process objectives. Although objectives are listed for the full four years of the project, objectives related to project design and implementation - those which must be completed in the first two years of the project--are spelled out in greatest detail. Start and end dates for achievement of these objectives are provided in the Project Activities Time Allocation Table. While the Activities Table does reflect process objectives for all four years of the project, the Personnel Allocation Chart defines division of responsibilities among project staff and collaborators for the first year only, based on the expectation that division of responsibilities will evolve as the project is implemented. A detailed discussion of outcome objectives follows the discussion of process. Since many outcome objectives are related to achievement of both of the project goals articulated above, these objectives are listed for the project as a whole, rather than goal by goal.
Process Objectives
Process objectives for the project are:
The process objectives above define the steps DPH program staff must complete to ensure appropriate follow-up on newborn hearing. Outcome objectives define the effects of these steps on the children, families, medical providers, birth hospitals, diagnostic centers and El and other early childhood programs with whom the project will interact. Achievement of the outcome objectives listed below will ensure progress towards achievement of project-goals.
Outcome Objectives
Outcome objectives of the project are:
These objectives are designed to ensure that families of children who screen positive receive information and support throughout the diagnostic process; children identified through screening receive timely diagnostic care; pediatric providers are mobilized to assist families through the diagnostic process; children diagnosed with hearing impairment are referred to and enrolled in Early Intervention programs; and pediatricians have information and resources they need to provide comprehensive care to children with hearing loss and their families. Achievement of these outcomes will advance Massachusetts' efforts to achieve the state's Negotiated Performance Measure # 09, which calls for statewide systems for early identification, referral, care coordination and services for newborns at risk. This project will address this performance measure by collecting newborn hearing screening results for 100% of the infants born in Massachusetts, and using the data to ensure that ultimately 100% of the infants that do not pass a hearing screening receive follow-up and linkage to diagnostic and intervention services. Revision of the birth certificate, which constitutes the first step in the process outlined above for tracking, will also enhance the state's capacity to achieve Core Performance Measure # 10, making it possible to determine the precise percentage of newborns who have been screened for hearing impairment before hospital discharge.
Required Resources
The project will require funding to amend the electronic birth certificate system to include results of newborn hearing screening. This critical component of the UNHSP has not been implemented previously, because funding has not been available for it. Information collected from the birth certificate will be downloaded weekly by the Registry of Vital Records and Statistics and used to track all newborns that do not pass a newborn hearing screening.
The project will require funding for three staff positions (1.0 FTE Outreach Coordinator, .5 FTE Parent Consultant, 1.0 FTE Outreach Consultant to be hired in the second year) The Outreach coordinator will work under the direct supervision of the UNHSP Program Director. This person will provide supervision to a .5 FTE part-time Parent consultant and in the second year of the project an Outreach Consultant. The Outreach Coordinator will work with the UNHS Program Director, the Parent Consultant, the Universal Newborn Hearing Screening Advisory Committee, the Massachusetts Chapter of the AAP, The Early Intervention Program, Massachusetts Commission for the Deaf and Hard of Hearing, Title V Programs, and others to plan a comprehensive system of outreach and follow-up. There will be a special emphasis on including consumers and consumer groups in planning this outreach, as the UNHSP realizes that parents are often inundated with information after the birth of an infant. The Coordinator will work to ensure that the following benchmarks are met: 1) identification of hearing loss no later than age 3 months and 2) begin intervention services no later than 6 months. This program will also seek to exceed these goals in the 2nd, 3rd, and 4th years of the project. The UNHSP would like to work towards reaching the following: 1) identification of hearing loss no later than 6 weeks and 2) begin intervention services no later than 3 months.
The following goals will be met by using the required resources: 1) ensuring access to diagnostic and intervention services for infants that do not pass a hearing screening, 2) ensuring availability of medical support by working with the family and the medical home. The Project objectives, which reflect these goals and will be met through using the required resources will include: 1) reducing the negative consequences of late identification of hearing loss in infants and young children and 2) ensuring that care for each newborn is appropriate, accessible, family-centered, coordinated, and culturally competent.
Funding has also been requested for 2 computers and a fax machine with a dedicated line to receive confidential information from hospitals and diagnostic centers. This equipment will be used by the project staff and to meet the objectives of this project. All grant funds will be used only for the purposes specified in the application and that necessary fiscal control and accounting procedures will be established.
Project Methodology
The state's Registrar of Vital Records has agreed to work with the UNHSP to amend the current electronic birth certificate for the purpose of collecting the results of each infant's newborn hearing screening test. The Registry of Vital Records will provide the Massachusetts Infant Hearing Linkage Project with a weekly data report listing the name of each infant that did not pass a hearing screening. Additional information that will be provided on each child are: parent's name, home address, telephone number, pediatrician's name, pediatrician's telephone number, and whether or not the parent signed a release for a home visit prior to delivery.
The Registrar reports that it takes approximately one year for additions or revisions to the birth certificate data to become reliable statewide. Our approach will, therefore, rely on a paper back-up system to identify children who screen positive during Year 1 of the project. The Outreach Coordinator will collect information on a dedicated fax line from a sample of hospitals on infants that do not pass a hearing screening. During the first year, the Outreach Coordinator will begin to provide outreach to parents using the faxed information. Outreach activities will include: 1) calling parents of infants that do not pass the hearing screening to ascertain if they have a diagnostic appointment, if they understand the importance of and intend to keep the appointment and whether the child has a medical home; 2) sending a letter to the medical home about the results of the hearing screening and what the results indicate 3) providing information on approved diagnostic centers if an infant does not have an appointment; and 4) sending an "alert" to the birth hospital of any child who does not have an appointment. Within two days of the scheduled appointment staff will call parents to find out the results of diagnostic appointment and initiate follow-up for children in whom hearing loss was confirmed. In cases where a family has not made an appointment after two calls from the program and, where possible, contact by their pediatrician, or where a family has missed two appointments, the program will: 1 ) organize a FirstLINK. home visit (if the family signed a release at the hospital); 2) call the medical home to notify the child's pediatrician of the situation; and/or 3) faxing a letter to medical home asking MD or nurse practitioner to talk to the family about the importance of follow-up. Experience gained early in Year 1 by the OC will be used to prepare written "scripts" which can be used to guide staff through interactions in each of these circumstances. It is expected that during years two, three and four the project staff will have the experience, materials, procedures and staffing capacity to provide follow-up to 100% of the infants that do not pass a hearing screening. Starting in Year 2 the AOC and the Parent Consultant will be responsible for calling infants that do not pass a hearing screening. At that point the OC, who will serve as supervisor for these other staff, will focus on follow-up of families that are difficult to reach, miss appointments, and refuse follow-up assistance. During all years of the project staff will make referrals to the Parent Coordinator whenever a parent needs the encouragement or support of another parent to assist in follow-up. A system will be set up with the Approved Diagnostic Centers to report back on each infants hearing screening. The Outreach Coordinator will be responsible for follow-up with families of infants that are diagnosed with a hearing loss. The parent consultant will also be available to encourage and support families of infants that are diagnosed with hearing loss.
Starting in Year 2 the OC will also focus more systematically on training of key players in the implementation of effective outreach. A conference in Year 2 will bring these players together to refine their understanding and participation in the program once basic policies and procedures are in place.
Throughout Years 3 and 4 staff will work to clarify and simplify the flowchart for follow-up on newborns who screen positive for hearing loss. During those years policies and procedures will be refined, systematized and documented, and efforts will be made to automate steps in follow-up to the maximum extent possible. It is important to note that the Massachusetts Department of Public Health has sought and will continue to seek funding from non-federal sources for a comprehensive data system that will automatically download information from the birth certificate and assist in follow-up not only for infants who do not pass the hearing screening, but also for those who are missed or whose screening results are indeterminate. This system will also permit automatic linkage of newborn hearing screening to FirstLINK and El data systems, thus facilitating home visits when necessary and tracking of El referral and enrollment. While the current proposal would not supplant funds required for establishment for that system, it would permit us to define steps in the process and pretest policies and procedures before full automation. This proposal would also support the establishment of relationships between the UNHSP and all other participant agencies and programs, thus ensuring a strong network for ongoing implementation when funding is no longer available.
Project Activities Time Allocation
Project Title: Massachusetts Infant Hearing Linkage Project
Project Director: Janet M. Farrell
Budget Period: 4/1/00 to 3/31/01
State: Massachusetts
| Objectives and Approaches |
|
|
|
|
| 1. Staff MIHLP at the state level | ||||
| Hire outreach coordinator (OC) |
|
|
Principle Investigator (PI) & Program Director (PD) oversight, coordinator hired; PD & OC oversight, parent hired | |
| Hire Parent Consultant (PC) |
|
|
||
| Begin hiring process of assistant outreach coordinator (AOC) |
|
|
||
| 2. Revise Electronic Birth Certificate | PD & OC oversight | |||
| Collaborate with registry of vital records personnel |
|
|
Addition to birth certificate completed | |
| Ensure agreed upon changes to the birth certificate are completed | ||||
| 3. Provide training | PD & OC oversight | |||
| Training of personnel in birth hospitals to complete revised sections of the electronic birth certificate |
|
|
Trainings & technical assistance documented | |
| Follow-up and technical assistance with hospital reporting |
|
|
||
| 4. Develop Products | PI, PD & OC oversight | |||
| Develop project flowchart for follow-up on children with positive hearing screen | Documents produced | |||
| Create flowchart |
|
|
||
| Testing flowchart |
|
|
||
| Develop phone scripts for physicians & parents | ||||
| Create scripts to address different contingencies |
|
|
||
| Testing scripts |
|
|
||
| Develop letters to physicians & parents | ||||
| Create letters to address different contingencies |
|
|
||
| Develop warning letter for hospitals failing to refer children with positive hearing screen | ||||
| Create letter |
|
|
||
| Develop form to track children after completion of diagnostic screening | ||||
| Create form |
|
|
||
| Pilot form |
|
|
||
| Develop physician information materials packet | ||||
| Gather materials (e.g. APP policy statement, Early Intervention information) |
|
|
||
| Create Packet |
|
|
||
| Develop parent & physician satisfaction survey | ||||
| Create survey |
|
|
||
| Pilot survey |
|
|
||
| 5. Establish MIHLP Protocols | ||||
| Plan for systematic dissemination of physician information packet |
|
|
||
| Establish procedures for offering technical assistance to physicians | ||||
| Establish procedures for monitoring time between screening & diagnosis | ||||
| Establish procedures for monitoring referrals to Early Intervention | ||||
| Establish procedures for monitoring the finalization of an IFSP | ||||
| Develop format & process for program reports | ||||
| Plan for dissemination of program reports | ||||
| Create draft of DPH policies related to intervention in cases of system failure | ||||
Personnel Allocation Chart
Project Title: Massachusetts Infant Hearing Linkage Project
Project Director: Janet M. Farrell
Budget Period: 4/1/00 to 3/31/01 Project Year: 1
State: Massachusetts
| Objectives and Approaches |
|
||||
|
|
|
|
|
||
| 1. Staff MIHLP at the state level |
|
|
|
||
| Hire outreach coordinator (OC) | |||||
| Hire Parent Consultant (PC) | |||||
| Begin hiring process of assistant outreach coordinator (AOC) | |||||
| 2. Revise Electronic Birth Certificate |
|
|
|
||
| Collaborate with registry of vital records personnel | |||||
| Ensure agreed upon changes to the birth certificate are completed | |||||
| 3. Provide training |
|
|
|
|
|
| Training of personnel in birth hospitals to complete revised sections of the electronic birth certificate | |||||
| Follow-up and technical assistance with hospital reporting | |||||
| 4. Develop Products |
|
|
|
|
|
| Develop project flowchart for follow-up on children with positive hearing screen | |||||
| Create flowchart | |||||
| Testing flowchart | |||||
| Develop phone scripts for physicians & parents | |||||
| Create scripts to address different contingencies | |||||
| Testing scripts | |||||
| Develop letters to physicians & parents | |||||
| Create letters to address different contingencies | |||||
| Develop warning letter for hospitals failing to refer children with positive hearing screen | |||||
| Create letter | |||||
| Develop form to track children after completion of diagnostic screening | |||||
| Create form | |||||
| Pilot form | |||||
| Develop physician information materials packet | |||||
| Gather materials (e.g. APP policy statement, Early Intervention information) | |||||
| Create Packet | |||||
| Develop parent & physician satisfaction survey | |||||
| Create survey | |||||
| Pilot survey | |||||
| 5. Establish MIHLP Protocols |
|
|
|
|
|
| Plan for systematic dissemination of physician information packet | |||||
| Establish procedures for offering technical assistance to physicians | |||||
| Establish procedures for monitoring time between screening & diagnosis | |||||
| Establish procedures for monitoring referrals to Early Intervention | |||||
| Establish procedures for monitoring the finalization of an IFSP | |||||
| Develop format & process for program reports | |||||
| Plan for dissemination of program reports | |||||
| Create draft of DPH policies related to intervention in cases of system failure | |||||
Plan for Evaluation
Three outcome evaluation strategies will be employed. A sample of parents (of children who screened positive and were then diagnosed with hearing loss and children who screened positive and were found to have no loss) and a sample of pediatricians will be surveyed one year post-birth about their satisfaction with screening, diagnosis and follow-up. In the First year, focus groups may be used as an alternative to surveys, in order to permit a more open-ended approach to measurement of satisfaction. Focus group results would then be used to inform survey design in subsequent years. One challenge in ascertainment of parent satisfaction will be the fact that in many cases the MIHLP will be the bearer of unhappy news to parents; focus group discussion will enable us to design instruments that separate parent responses to the message from parent perceptions of the messenger.
In addition, time from screening to diagnosis will be tracked for all children who screen positive to ascertain the percentage of children diagnosed within one and within three months of birth. In order to make it possible to use this variable as a measure of program effectiveness, program staff will need to work effectively with diagnostic centers to ensure that they comply with reporting requirements. The development and use of a form to report when each child with a positive screen is seen for diagnosis will permit tracking of this variable.
El enrollment of children with hearing loss will be tracked (through the department's highly sophisticated El database) to ascertain the percent of children diagnosed with hearing loss who begin receiving services by the ages noted in the list of outcome objectives above. Successful achievement of objectives will require effective collaboration between program staff and diagnostic centers, pediatricians, and EI programs, as well as partnership of all of these service systems with families.
Finally, as noted above, system "failures" at any stage will be noted and feedback will be provided to hospitals, diagnostic centers and pediatricians when children in their caseloads experience delays in diagnosis or care.
