MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT

Project Title: Newborn Hearing Systems
Project Number:
Project Director: Vickie Thomson Phone (303) 492-6283
Organization Name: University of Colorado, Boulder
Address: S.L.H.S - Campus Box 409
University of Colorado
Boulder, CO 80309-0409
Contact Person:_Vickie Thomson Phone (303 ) 492-6283
Fax: (303 ) 492- 3274
E-mail/World Wide Web Address: mdnc@spot.colorado.edu
Project Period: Years 4 From: April 1, 2000 To: March 31, 2004
Organizational Setting: University of Colorado, Speech, Language, and Hearing Sciences
Project Name: Newborn Hearing Systems
Project director: Vickie Thomson
Entity Responsible: University of Colorado, Contracts and Grants, SLHS Department.

Purpose:
The purpose of this project is to plan, demonstrate, implement, and refine a sustainable infrastructure in the State of Colorado in the following areas: screening, audiological assessment, identifying a medical home, family input and associated family support, early intervention, culturally competent practices, professional and public education, and evaluation for infant hearing systems. Families in the State of Colorado will benefit from this project because they will have assurance that they will receive appropriate and timely follow up after their baby receives a hearing screening. Appropriate and timely follow-up in each of the stated priorities, screening, audiological assessment, and early intervention, will be accomplished by a system which is built through a collaborative effort with professionals, families, and consumers. This collaboration is essential in order to sustain the activities that are listed.

Problem:
Colorado has successfully passed legislation and is in the process of implementing Newborn Hearing Systems. However, infants and their families in Colorado that are screened prior to hospital discharge may not receive timely and appropriate follow-up services due: to lack of resources within the state system, interagency coordination, coordination with the child's medical home, funding for statewide parent leadership activities, and appropriate written resources.

Goals and Objectives:
Goals, objectives and activities in the areas of screening, assessment and early intervention will be undertaken. The major goals for each area are: Screening - 1) Increase return for follow-up after discharge. 2) Reduce high refer rates at discharge in individual hospitals to 4% or less. 3) Identify the outpatient medical home for follow-up at discharge. 4) Increase the number of infants who receive diagnosis evaluations by three months of age. 5) Increase the number of infants who are home birthed that will receive a screening. Assessment - 1) Develop comprehensive, community-based diagnostic and amplification services to reduce the number of providers for families and provide easy access to services. 2) Increase the number of audiologists with pediatric expertise. 3) Assure families have access to public/private funds to pay for services. 4) Assure referral to the CO-Hear Coordinators within 48 hours of diagnosis to comply with the Part C federal regulations. 5) Increase Audiologists awareness of communication options and services (e.g. Part C, DDS). 6) Provide training to audiologists in areas of counseling families. 7) Assure families have materials in their language and/or interpreters available.

Early Intervention - 1) Develop a Regional Deaf Role Model Program. 2) Offer support to families through a regionalized network of parent advocates that function statewide. 3) Create and fund training professionals working with infant. 4) Offer information and provide access to families on all communication options. 5) Increase the participation of the number of families who participate in the FAMILY Assessment to objectively measure developmental outcomes. 6) Provide parent support to families who speak only Spanish. 7) Increase physician awareness of the system and their participation.

Methodology
This project proposes to have three coordinators whose responsibilities will be to provide technical assistance to the state's Newborn Hearing Systems and to assure interagency collaboration. Technical assistance will be supplied in the following areas: 1) Screening 2) Assessment 3) Early Intervention 4) Parent input and support. Assistance will be provided through statewide on-site, as well as distance-based (video and teleconference) workshops, telephone calls, correspondence, and training manuals. Regional Parent Coordinators will be hired and trained, as well as a Spanish speaking parent coordinator for the State.

Evaluation
The evaluation of this project will be demonstrated in a variety of ways. Evaluations by participants of workshops and conferences will be analyzed and reported. The Electronic Birth Certificate Data System will report information in the areas of screening, diagnosis, and early intervention. Performance outcome data for children in early intervention will be collected at the University of Colorado and disseminated. Progress made in development of parent leadership programs will be collected, analyzed and reported annually.

Annotation:
The purpose of this project is to establish comprehensive Newborn Hearing Systems with appropriate and timely diagnosis, amplification fit, and intervention in the State of Colorado. This comprehensive plan is designed to circumvent the potential negative sequelae of hearing loss upon communication and general development. This project reflects the goals & objectives to plan, demonstrate, implement and refine Colorado's comprehensive system. Coordination among agencies through existing task forces and proposed networks, will be responsible for dissemination of materials, data collection, enhanced opportunities for parent to parent contact, and the refinement of the Newborn Hearing Systems in Colorado.

Key Words:
Universal newborn hearing screening, early intervention, early identification of hearing loss, parent leadership

PROJECT NARRATIVE

1.1 Purpose of the Project

1.1.1 Describe the problem with supporting evidence that clearly reflects the magnitude of the problem:
Over the past decade numerous agencies have endorsed Universal Newborn Hearing Screening (1,2). Over 20 states have passed legislation and are in the process of implementing programs in their states. National Statistics indicate that only 50% of infants and their families return for recommended rescreens or diagnostic assessment. Colorado's experience is similar, with only 65% of infants returning for recommended rescreens and/or diagnostic evaluations. In addition, infants in Colorado who refer on a hearing screen prior to hospital discharge may not receive timely and appropriate follow-up due to lack of coordination with the child's medical home and other agencies. There is also an identified lack of family support networks statewide and community based resources for audiologic assessment and genetic services.

1.1.2 Provide rationale and evidence supporting the proposed intervention/demonstration:
Since many hearing screening programs in the country have been established without appropriate and timely follow up, The American Academy of Pediatrics ( 1) and the Joint Committee on Infant Hearing (2) have promoted the development of comprehensive systems of care from screening to assessment and to early intervention. The Marion Downs National Center for Infant Hearing, which currently holds the Maternal and Child Health Technical Assistance Grant at the University of Colorado, has stated four goals to achieve a comprehensive statewide system for infants who are deaf and hard of hearing. These goals are: Goal 1: States will achieve universal newborn hearing screening (a minimum of 85% of births) Goal 2: States will achieve diagnosis of hearing loss by 4 months of age and begin intervention by 6 months of age Goal 3: States will document the developmental profiles of infants and toddlers with hearing loss Goal 4: State Maternal and Child Health Programs will have coordinated systems for newborn hearing screening, diagnosis, and early intervention

1.1.3 Identify whether the application is submitted as an application for planning, demonstration, implementation, and/or program refinement:
The purpose of this project is to plan, demonstrate, implement to varying degrees and refine a sustainable infrastructure in the State of Colorado in the following areas; screening, audiological assessment, identifying a medical home, family input and associated family support, early intervention, culturally competent practices, professional and public education, and evaluation. Families in the State of Colorado will benefit from this project because they will have assurance that they will receive appropriate and timely follow up after their baby receives a hearing screening. This follow up includes medical and audiological assessment, early intervention and family support services. Appropriate and timely follow-up in each of the stated priorities, screening, audiological assessment, and early intervention, will be accomplished by a system which is built through a collaborative effort with professionals, families, and consumers. This collaboration is essential in order to sustain the activities that are listed.

1.1.4 Describe the anticipated benefit in terms of the "Purpose and Program goals":
Goals, objectives and activities in the areas of screening, assessment and early intervention will be undertaken. Since Colorado has had many years to develop its program, some activities will refine the existing screening system. Because of funding challenges and system barriers, Colorado has not yet created a sustainable assessment program. Therefore, there are activities in this area that will start at the planning stage and, over the course of the four year grant period, extend into the demonstration phase. Colorado has chosen to adopt some of the activities that have been successfully implemented in other states. There have also been some long standing obstacles to the development of a sustainable system of early intervention practices. Some activities, particularly in this early intervention area, will start at the demonstration stage and extend into the implementation stage during the term of this grant.

1.2 Organizational Experience and Capacity

1.2.1 Demonstrate evidence of organizational experience and capability to coordinate and support planning, implementation and evaluation of a comprehensive approach that will meet the objectives of the UNHS priority:
Colorado has the support of a large body of professionals and parent advocates, as well as the experience, to accomplish the goals of this grant. The Colorado Newborn Hearing Screening Program (CNHSP) was first instituted in 1992 by the Colorado Department of Public Health and Environment (CDPH&E), Health Care Program (HCP) for Children with Special Needs.

Advisory Board and Task Forces: Legislation was passed in 1997 (appendices pgs 1-6)required the establishment of an Advisory Board. The CNHSP has successfully developed a working advisory board that meets quarterly to review, endorse and promote elements of the state system. The members of the Advisory Board represent physician groups, audiologists, early interventionists, consumers, parents, Part C, The Department of Education (Part C, Educational Audiology, Education of the Deaf/Hard of Hearing, Colorado School for the Deaf & Blind), and the Department of Public Health and Environment (Epidemiology, Children with Special Health Care Needs, Vital Records, Colorado Responds to Children with Special Needs Children.

To provide input to the Advisory Board, four different task forces have been established. Colorado has a Screening Task Force, an Audiologic Assessment/Amplification Task Force, an Early Intervention Task Force, and a Medical Task Force. Members of each of these task forces are composed of professionals, parents, consumers who are Deaf/HOH, and representatives from agencies that contribute to these individual areas (appendices pgs.8-11)

Medical Task Force: The Medical Task Force is compromised of the physicians from the Colorado Infant Hearing Advisory Committee. This Task Force has been instrumental in disseminating information to the medical community via letters, articles, and presentations. They have also developed medical guidelines for the primary care physician, otolaryngologist, and geneticist (3).

Screening Task Force: Since the inception of newborn hearing screening, Colorado has been a pioneer in the implementation of universal hearing screening programs. Legislation was passed in 1997 that required hospitals to offer a newborn hearing screen prior to hospital discharge. All Colorado birthing hospitals are providing hearing screenings at this time. ??% of the babies born in Colorado are receiving a hearing screening before hospital discharge. The Screening Task Force has been in place since 1992. The task force initially was comprised of audiologists and hospital personnel to provide information (e.g. JCAHO policies and procedures, Competency Based Orientations for Screeners) for the implementation of screening programs in hospitals. To assure the programs being established meet families' needs, parents and consumers have been added to the Task Force. The Task Force has developed brochures and guidelines for hospital use and models for transition from hospital screening to diagnosis (3). An important goal of this group has been to develop the data management/tracking system. This system has evolved from a manual model to the electronic birth certificate, which is currently being implemented in all Colorado birthing hospitals.

Audiologic Assessment and Amplification Task Force: The Audiology Task Force has been instrumental in developing guidelines for a comprehensive infant audiologic assessment (3). The Task Force also developed a checklist (appendices pg.16) so the diagnosing audiologist can follow the appropriate steps to assure the following: that a comprehensive assessment has been completed; the family is given referral information; early intervention agencies such as Part C and/or the CO-Hear Regional Coordinator are notified; information about the comfirmation of the hearing loss and recommendations for otologic and early intervention referral are sent and discussed with the infant's medical home.

The Task Force is currently working on an amplification guideline so that audiologists will use current technology and assessment tools to assure the most appropriate fitting for the infant. The Task Force is also critical for assessing the training needs of audiologists in the state.

Early Intervention Task Force: This Task Force has distinguished itself with success to the degree that other states are using this as a model. A group of leaders in Colorado have been meeting for many years, even prior to the start of newborn hearing screening. Some of the accomplishments of the group, prior to the establishment of the existing Early Intervention Task Force, include: use of the FAMILY Assessment, an outcome based assessment protocol, for all children in Colorado (3); endorsement of use of all communication methods; Parent input in program development, program administration, and delivery of direct services.

Some of the objectives of the Task Force which have been accomplished since 1996 include: identifying funding sources for intervention (appendices pg.12); a program of sign language instructors who teach sign language, in the home, to parents of deaf children; designing the adaptations needed to serve children in non-English speaking homes. The objectives which have been identified and require additional resources to be implemented include: preservice and inservice training needs for early interventionists; participation by deaf and hard of hearing adults in Early Intervention; collaboration with Child Find and Part C; educating the medical community about early intervention; assuring a smooth transition for families from assessment to early intervention; assuring positive outcomes for families.

Colorado Families for Hands and Voices: This is a parent-driven organization that supports families using all communication methodologies. It has played a vital leadership role in the establishment of a comprehensive system for newborn hearing screening on a state and national level. Inviting parent participation in the implementation of a comprehensive system helps to build a system that not only offers services based on professional training and expertise, but also offers a family-friendly program that works for real families, in real life settings. Parents and professionals each bring to the table a unique knowledge and experience, which combine to define a comprehensive system that works successfully. It is imperative to include parents in the process, or the system being built will never be fully balanced. Colorado Families for Hands & Voices has shared its parent perspective on a state and national level. This parent group has published articles and made presentations endorsing newborn hearing screening systems (appendices pgs. 13-14) Members of Colorado Families for Hands & Voices have served on the Newborn Hearing Task Forces, the Newborn Hearing Advisory Board, and other agency boards (Part C, Colorado Department of Education) to represent the needs of families, while supporting use of all modes of communication.

In 1998, the Outreach Department of the Colorado School for the Deaf and Blind was reorganized. New priorities were established for the funds in this department. And, a new administrative structure was created. There are 4 people serving on the Outreach Leadership Team which is responsible for establishing the goals for outreach, assigning funds and monitoring outcomes. One person is from the Colorado Department of Education. The second is from the Colorado School for the Deaf & Blind. A parent from Colorado Families for Hands & Voices is the third and the coordinator for the Early Intervention Task Force is the fourth. This representation clearly enhances Colorado's system serving infants and toddlers with hearing loss.

1.2.2 Describe your agency's leadership role in activities at the national level related to addressing issues of State Title V CSHCN programs as well as technical assistance and training:
The Colorado Newborn Hearing Screening Program was one of the first state screening programs developed through the CDPH&E/HCP, within a Title V Program, and has been a project model for many other State Title V Programs. The MCH Grant award to the University of Colorado, creating the Marion Downs National Center (MDNC), further promoted Colorado's model. The participating nineteen states (AL, AK, AZ, CO, HI, KS, LA, MA, MI, MN, MS, NM, OK, RI, SC, TN, TX, VA, WY) on the MCH Grant, albeit each unique, work collaboratively to share state plans, goals, guidelines and successes throughout the system of screening, assessment and early intervention. The Guidelines (4) developed through the Colorado Infant Hearing Advisory Committee and the respective task forces have been disseminated at national meetings and are being used as models for many states and organizations.

The Health Care Program (HCP) for Children with Special Needs has staff members who have actively participated for 15 years with the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA). DSHPSHWA members within Title V programs are typically responsible for implementing newborn hearing screening programs. A new goal of this organization is to implement vision screening programs. Colorado has made vision screening a priority for CSHCN programs and is providing national and local training and expertise.

Colorado is fortunate to have members on The Colorado Infant Hearing Advisory Committee members who have presented regularly on a local, state and national level regarding the importance of early identification and intervention (appendices pgs 7-8).

Colorado is one of the states participating in the national database through the Centers for Disease Control. Vickie Thomson, State Coordinator for the Colorado Newborn Hearing Screening Program, is on the data base task force committee for CDC. Several Colorado hospitals are using a variety of commercial databases such as the OZ/SIMS system, HiTrack/NCHAM, and Databook/Natus Medical. The CNHSP is implementing a unique data management system utilizing the electronic birth certificate (EBC) for sending newborn hearing screening results directly from the birthing hospital to the CDPH&E and then directly to HCP. This system will provide both a hospital and a state database. Many other states are planning to use the software developed by Colorado for their Title V data management program. A computer programmer has been hired to develop a program that will generate individual hospital reports and track infants who are missed, transferred or who fail the screen. The goal is to expand the fields in the software program to include data points relevant to assessment, amplification, and early intervention. These additional data fields are needed for tracking and program quality assurance. Integrating the newborn hearing screening database with the EBC, at the hospital level, has eliminated the need for additional computers and separate software, thus reducing costs and input error. The Metabolic/Genetic Newborn Screen was simultaneously added to the EBC thus allowing for collaboration between divisions in the Health Department. Colorado is including the data points recommended by the CDC Task Force for a national database and is encouraging other states to include these data points in their state data management systems.

The concept of the regionalized Colorado Hearing Resource (CO-Hear) Coordinators is a model for many other states. The CO-Hear Coordinators have expertise in hearing loss and provide unbiased communication/methodology information and access to resources to families. They also developed the Colorado Resource Guide, which has been utilized by many other states as they develop information for parents.

1.3 Administration and Organization

1.3.1 Demonstrate the administrative and organizational structure within which the project will function, including relationships with other community, state, regional or national entities
The Family & Community Health Services Division (FCHSD) at the Colorado Department of Public Health & Environment (CDPH&E) receives funding from the Maternal & Child Health Bureau. The Health Care Program (HCP) for Children with Special Needs resides within this division. It is one of many MCH programs.(Table 1)

Approximately 4 years ago, HCP made a dedicated effort to regionalize its services, putting the responsibility for program implementation into 13 regional offices (appendices pg.15). Each regional office has the responsibility for implementing core public health functions. Each regional office has the responsibility for implementing core public health functions. There are multidisciplinary teams (PT/OT, Speech, Audiology, CO-Hear, Social Work, Parent, Nurse Coordinators) in each of the 13 regional HCP offices. There is a part time FTE for the State Audiology Consultant and 11 Audiology Regional Coordinators which are also a .05 FTE in each region. The Scope of Work for the Audiology Regional Coordinators includes: technical assistance and training to providers and community agencies; collaborate with the CO-Hear Coordinator to provide comprehensive services for families with children who have hearing loss; obtain funding for amplificiation; collaborate with Part C and Childfind Coordinators; participate on the local Interagency Coordinating Councils (ICC); attend professional inservices; work with hospitals to develop a comprehensive protocol for follow-up and disseminate information to medical homes and other agencies.

Likewise, the Director of the Colorado Home Intervention Program (CHIP), an early intervention program for deaf/hard of hearing children, is employed by the Colorado Dept. of Public Health. This is a part time FTE and implementation of the program is accomplished by the 9 Colorado Hearing Resource (CO-Hear) Coordinators who are assigned to each regional office. The Colorado Home Intervention Program is an early intervention program serving families with children who are deaf/hard of hearing under the age of 3 years. This program was initially funded as a demonstration project with federal funds at the University of Denver. In the early 1970's, when the grant ended, the Colorado Department of Public Health embraced the program and funded it with state allocated funds. CHIP has provided home-bound, parent-centered early intervention to deaf and hard of hearing babies statewide. It currently provides direct services to 150 families and their children with hearing loss.

In 1988, when CHIP regionalized implementation of the early intervention program, it hired master clinicians as the CO-Hear Coordinators. In a similar fashion to the Audiology Regional Coordinators, each of these CO-Hear Coordinators are contracted, part time, with state funds allocated to the 13 regional offices. The Scope of Work for the CO-Hear Coordinator includes: providing technical assistance and training; care coordination for funding and services for families; providing direct services; participate in local Interagency Coordinating Councils (ICC) ; monitoring activities of the interventionists.

The Colorado Newborn Hearing Screening Program has developed suggested protocols for hospital-based screening programs. Each hospital has the flexibility to develop a follow-up protocol that is based on their hospital census and community resources. Colorado encourages hospitals to strive for a refer rate at discharge of 4% or less as recommended by the AAP (1). The majority of Colorado hospitals provide an inpatient screen and then a rescreen for those infants who did not pass the initial screen prior to hospital discharge. Infants and their families are encouraged to come back for an outpatient rescreen within two weeks. If an infant fails the outpatient rescreen they are referred to a pediatric diagnostic audiologist by the medical home or primary care physician. The State Registrar in the process of giving permission to allow the local HCP Regional Offices and Audiology Regional Coordinators to receive the hospital reports, which contain individual infant names. This will facilitate cooperation between the local hospitals and the local HCP offices to track infants through the entire process to assure appropriate and timely follow-up. The legislation names the CDPH&E as the lead agency responsible for assuring tracking and follow-up.

Colorado has developed a protocol to assure a seamless transition from assessment to intervention. The diagnosing audiologist contacts the CO-Hear Regional Coordinator when an infant is confirmed with a hearing loss. The family signs an informed consent for this transaction to occur. The diagnosing audiologist also has a checklist (appendices pg.16) to assure that information is given to the family as well as disseminated to the medical home, CO-Hear Coordinator and the CDPHE. The checklist was developed by the Audiology Assessment/Amplification Task Force. When a child has a confirmed hearing loss, the diagnosing audiologist contacts the CO-Hear Coordinator. The CO-Hear Coordinator accepts the responsibility for contacting the family, contacting local agencies (Part C, Developmental Disabilities Services, Child Find, local Public Health) and contacting the state health department

Contact with local agencies: In Colorado, administration of the Part C program (Early Childhood Connections) is allocated to each county. The Part C program in each county includes representatives from Developmental Disabilities, Public Health, and Child Find. Parents are also members of each county's Part C program. The CO-Hear Coordinator obtains the referral of a child with hearing loss from the diagnosing audiologist. As an active member of the local Part C program, the CO-Hear Coordinator is in an ideal position to ensure that each family is aware of the Part C agency and that the local Part C agency knows that the family's IFSP has been completed (appendices pgs. 21-22).

Contact with the state health department: As a contracted employee of the Colorado Department of Public Health, the CO-Hear Coordinator can supply the data about each child to the state health department where the census of deaf/hard of hearing children is managed. Additions to the EBC data management system will be made, as proposed in this grant, to provide an automated data management system.

Contact with the family: The CO-Hear Coordinator meets each family. The initial service coordination takes approximately 8 hours per family. The Co-Hear Coordinator provides information about hearing loss and early intervention programs. The family can select a program that works specifically with very young children who are deaf/hard of hearing or a non-categorical early intervention program. Families are encouraged to select the program that meets their needs and the developmental needs of their child. The CO-Hear Coordinator works with each family to explain the different communication methods that are appropriate for children with hearing loss. This information is provided through demonstration, written information, videotapes, and discussion. The CO-Hear Coordinator also finds funding for the early intervention services. There are multiple funding sources for children in Colorado (appendices pg. 12). If the family chooses to receive services from the Colorado Home Intervention Program (CHIP), the largest statewide program that operates through the CSHCN program, the CO-Hear Coordinator will continue to be involved with the family. If the family chooses another early intervention program, the CO-Hear's participation with the family as a service coordinator, a resource for funding, and/or a consultant is always available on parent request. Often, the Part C agency asks the CO-Hear Coordinator to stay involved with the family when a hearing loss is identified. The CO-Hear Coordinator has expertise in this field and is fully aware of Part C regulations, procedures and protocols.

A checklist for the CO-Hear Coordinator has been developed to monitor the responsibilities they have been given (appendices pgs. 17-18). The flow chart identifying the transition from diagnosis to early intervention and this checklist for the CO-Hear Coordinators were developed by the Early Intervention Task Force. All members of the Task Force, including the representatives from the state Part C program, Developmental Disabilities, and Child Find have endorsed these procedures.

Parent Professionals: Currently, Colorado is demonstrating the use of parent coordinators through a collaborative effort with the CO-Hear Coordinator in the Denver Metro region. This effort is currently being funded through a grant with the Center for Disease Control. These parent coordinators are parents of children who are deaf/hard of hearing who can share their hard earned expertise with others in their community. Part C of IDEA has identified the need for improved service coordination for families as one of its priorities. However, the local community coordinators and service coordinators often lack experience in the area of service and supports for hearing impaired infants. The parent coordinators act as liaisons to the Part C system, and therefore increase both the quality of service coordination and level of support available through Part C. The scope of work for these parent coordinators is found in the appendices pgs 19-20.

Parent Coordinators are currently making an impact in the Denver Metro region, serving as a model for this grant project's goal of implementing parent coordinators in regions throughout the state. Parent coordinators have an opportunity to connect with other parents to provide emotional support and offer resources, create forums for families of newly identified children to gather, provide direct parent input to other state agencies and programs, and to raise awareness among physicians, otolaryngologists, audiologists and other members of a family's medical home on the impact of hearing loss, and the need for coordination of services.

While the newborn hearing system is under the auspices of the CSHCN program, relationships with other organizations have been developed and have been maintained.

Part C:..The State Part C Coordinator is a member of the state advisory and the Early Intervention Task Force. When the system for referral from diagnosis to early intervention was created, support from Part C was given. In Colorado, administration of Part C programs is delegated to the counties. The CO-Hear Coordinators are closely associated with Part C at the county level. They are members of the local ICC. And, counties recognize their expertise and often request the CO-Hear coordinator to provide service coordination for deaf and hard of hearing children.

John F. Kennedy Partners (JFK): JFK is an MCH Program through the University Affiliated Programs. HCP meets monthly with JFK through the Co-Lend Project to assure collaboration between MCH programs and to coordinate activities. JFK has been instrumental in promoting the Colorado Newborn Hearing Screening Program and is currently scheduled to downlink a full day videoconference to a variety of state and national sites. The relationship between HCP and JFK will further enhance the goals and objectives of this grant proposal.

Colorado Health Plan Plus (CHP+): CHP+ is the Child Health Insurance Program which works closely with HCP to develop an insurance program for financially eligible children with special health care needs. The staff at HCP provides consultation and includes CHP+ in many provider conferences.

Health Maintenance Organizations (HMO's): HMO's are working with HCP to develop care coordination contracts for CSHCN and their families. We are also working with HMO's to explore the feasibility of having HMO's pay for amplification and early intervention for infants who are deaf and hard of hearing.

Medicaid: Medicaid reimburses HCP for CSHCN who are financially eligible. The staff at HCP works intimately with Medicaid to assure adequate reimbursement levels for providers and to assure the needs of families are met.

Colorado School for the Deaf and Blind (CSDB): CSDB provides funds through their Outreach Program for direct services to children who do not have other funding sources. These funds pay for the early interventionist and for a sign language instructor, when requested. The deaf/hard of hearing role model program for 3-21 year old children operates through CSDB. The Colorado Home Intervention Program (CHIP) administers the deaf/hard of hearing role model program for families and their children under the age of 3. CSDB and CHIP work cooperatively to fund and administer the role model program. Training is done cooperatively. Materials are shared.

Magnet School for the Deaf (MSD): MSD is a charter school in the Denver metropolitan region. The school advocates and implements a bilingual approach to education for the deaf. In 1999, MSD extended their program to the families of children under the age of 3 years. A memorandum of understanding was written to solidify the collaborative relationship between CHIP and MSD. CHIP serves as the parent organization, providing home-based, parent-centered programming. An employee of MSD has been hired by CHIP and receives ongoing inservice training from CHIP. MSD has funding to develop a parent support group and materials for families using American Sign Language as their primary mode of communication with their child. These activities and materials are available to all families on CHIP.

The Colorado Home Intervention Program (CHIP): CHIPis the largest early intervention program in Colorado. Through the CSHCN program, it provides service coordination, ongoing assessment, direct services, and data collection. The program has memorandums of understanding with several local programs and Part C (appendices pg. 22) .

The Patient Advocacy Coalition: The Patient Coalition supports families as they appeal claims to their insurance companies. The Patient Advocacy Coalition has successfully appealed to many insurance companies on behalf of families of deaf and hard of hearing children to fund amplification and early intervention services. At this time, The Coalition is promoting legislation to require HMOs to fund amplification for their members.

Colorado Academy of Audiology (CAA): CAA supports continuing education programs for audiologists as well as dissimiates information about Newborn Hearing Systems through quarterly newsletters.

Colorado Department of Education (CDE): CDE through the Audiology division, provides continuing education and dissemination of materials to educational audiologists.

The University of Colorado (CU): CU, Department of Speech, Language, Hearing Sciences has provided the research to support the efficacy of universal hearing screening through an NIH Grant. This provides Colorado with the unique opportunity to collect outcome data on infants and children and the benefits of early identification as well as amplification technologies. The Department currently holds the MCHB technical assistance grant for universal newborn hearing screening which provides the state the opportunity to collaborate with other states on successful outcomes for systems building. There is an agreement between CU and the CDPH&E for this Project on page 25 of the appendices.

1.4 Available Resources

1.4.1 Include a brief description of the available resources (staff, funds, equipment, facilities, etc) to carry out the program:
Staff Provided by CSHCN: The Colorado Department of Health, Health Care Program for Special Needs employs the following staff to provide guidance and support the project as an in-kind contribution:

Vickie Thomson (.35 FTE) Coordinator of the Colorado Newborn Hearing Screening Program (appendices pgs. 41-42,46-47).

Arlene Stredler Brown (.65 FTE) Director of the Colorado Home Intervention Program (CHIP) (appendices pgs. 42-43,48).

Dinah Beams (.40 FTE) Consultant for the Colorado Home Intervention Program

The CSHCN program provides office staff as an in kind contribution. The office staff fulfills clerical needs such as meeting arrangements, duplicating, word processing and dissemination of documents.

Funding: The Colorado Home Intervention Program has been operating through the CSHCN program since 1972. Today, it has a budget of approximately $270,000 per year. The majority of this funding comes from the CSHCN program with approximately 20% of the funding coming from local Part C groups, grants from the Colorado Department of Education, the Outreach Department of The Colorado School for the Deaf & Blind (CSDB), and in kind contributions from the University of Colorado-Boulder (appendices pg. 15 ) Local Part C groups are paying for some service coordination provided by the CO-Hear Coordinators. The Colorado Department of Education provides grants to pay for services to children with dual sensory impairments (deafblind), and provides partial funding for the few identified deaf/hard of hearing role models. Outreach at CSDB pays for direct services for children with no other funding sources. And, the University of Colorado provides extensive support for The FAMILY Assessment, the evaluation protocol that is used to measure outcomes of early intervention. The staff at the University of Colorado, supported in part by a grant from the National Institutes of Health, mail out the assessment packets, score the protocols and generate a report that is mailed to each interventionist. At this time, adequate funding is available to sustain the program but additional contracted staff is needed to support program growth.

Staff: The Colorado Home Intervention Program, the only statewide early intervention program for deaf and hard of hearing infants and toddlers, has a total of 1.05 FTE hired by the CSHCN program. In addition, the 9 CO-Hear Coordinators, who work through the 13 regional offices, have a budget of approximately $35,000. These are contracted providers and they are paid $20.00/hour for their time. Several local Part C agencies pay for this service coordination. The early intervention providers, known as family facilitators, visit the families in their homes. While weekly visits are the norm, the number of visits per month is decided at the IFSP. Sign language instructors are hired hourly at $20.00/hour. These sign language instructors are fluent users of sign language and teach families using the language/system chosen by the family (American Sign Language, Manually Coded English, Conceptually Accurate Signed English, Pidgin Signed English). The deaf and hard of hearing role models receive $35.00/session. At this time, only $1500 is dedicated to this developing program. A parent consultant and a consumer consultant are hired by the program and paid hourly for their time.

Equipment: CHIP has a small budget for equipment which purchases videotapes about communication methods for each family, books and pamphlets for the lending library and videotapes for sign language instruction. Office equipment is provided by the CSHCN program.

In addition to personnel specifically responsible for implementation of the newborn hearing system, HCP has 13 Regional Offices (appendices pg.15). The Regional Offices are participants in their respective communities' Part C Programs and are represented on the local Interagency Coordinating Councils. The Regional Offices provide care coordination to families and children with special needs. The addition of a parent knowledgeable about infants who are deaf and hard of hearing, the parent-professionals discussed below, will add additional expertise and provide needed parent to parent support services.

There are six regional Genetic Clinics supported through The Children's Hospital. Each of these clinics has a genetisist and genetic counselors. The addition of a genetic counselor to provide an initial needs assessment and work with the CO-Hear Coordinator, the Audiology Regional Coordinator and the proposed Parent-Professional in these regional settings to develop a multidisciplinary team. A multidisciplinary team can evaluate the infant and family, identify their needs, answer questions, and meet a family's request for further genetic testing. This grant will ask for support to develop these multidisciplinary teams specifically for children with hearing loss.

1.5 Identification of Target Populations and Service Availability

1.5.1 Describe the target population for proposed activities.
The target population will be all newborn infants and their families born in the State of Colorado. The State of Colorado has a diverse population that includes people from Hispanic/Latino, African American and Asian cultures. There is significant representation of rural, frontier and urban areas with a broad socioeconomic representation. The grant project will target all infants receiving a hearing screen in the hospital and subsequently focus on those infants and their families who do not pass the hearing screen, who need a diagnostic evaluation, and who need early intervention services.

1.5.2 Describe your current understanding of the needs, special problems and barriers facing the target population of CSHCN programs related to issues addressed.
Currently there are gaps in services in many regions of the state and significant barriers to services due to lack of funding, professional expertise in deafness, transportation issues and language barriers. HCP's regionalized program will provide the structure to further develop the Parent Support Network and the Genetic Regional Clinics. This Project will then provide a comprehensive, community-based, culturally sensitive system within the infant's medical home. Regional centers decrease barriers for families and provide services in a timely manner.

1.6 Needs Assessment

1.6.1 Describe prior and proposed needs assessment activities and data that determine the need for the proposed activities, determine unmet needs, barriers and special problems to be overcome:
There has been a long history tracking the outcomes of screening, assessment and early intervention in Colorado. The newborn hearing screening program has been in place for 8 years. And, the screening coordinator has monitored the outcomes of this project since its inception. Clinical audiology has been organized through the Colorado Academy of Audiology and the Colorado Speech/Language/Hearing Association before that. And, the early intervention program has been in operation through the CSHCN program since 1972. Again, data has been collected and outcomes for children with hearing loss have been monitored through report and objective assessment outcome data. Based on this long experience, it is with confidence that the following needs and problems in the system have been developed.

Screening: As of December 1999, 92% of the children are being screened, and 35% of those requiring additional testing are not returning for either a rescreen or diagnostic evaluation.

Some hospitals in Colorado have a refer rate that exceeds the 4% refer rate recommended in the American Association of Pediatrics Guidelines (1). It is important to help these hospitals identify the reason for this high refer rate and to establish a plan to reduce it.

At this time, most children do not have their medical home listed on their hospital records. Sometimes the information is obtained after diagnostic assessment has been initiated making the information available to only some service providers. Identifying the child's medical home before hospital discharge would assure appropriate follow up for each child.

Children born at home are currently not receiving information about the importance of hearing screening at birth and the early identification of hearing loss nor are they receiving a hearing screen.

Information also needs to be translated into other languages.

Audiology Assessment and Amplification: Many families, especially in rural areas of the state, do not have easy access to experienced and competent pediatric audiologists. Some families must travel far distances to see an experienced pediatric audiologist. Since infants must return frequently to the audiologist to obtain comprehensive audiological information, families traveling far distances have often not been able to obtain a comprehensive evaluation in a timely manner. In addition, the quality of the amplification fit has been compromised when the audiologist is not familiar with fitting babies.

The state CSHCN program and individual hospitals are making a concerted effort to hire Spanish interpreters. However, families from Spanish-speaking homes do not receive written information about hearing loss and assessment in their native language.

Federal Part C regulations require a child with a disability to be referred within 48 hours from the time of diagnosis. This quick referral is not being done in Colorado. Diagnosing audiologists need to be provided with additional information about Part C and the referral procedures that have been adopted. Referral to the Colorado Hearing Resource (CO-Hear) Coordinator needs to be made by the diagnosing audiologist within 48 hours of the diagnosis.

Diagnostic audiologists are generally naïve about the early intervention programs that exist in their community. In addition, they need additional and ongoing training to understand the spectrum of communication methods and the selection criteria for choosing a method that exist. Early intervention for deaf and hard of hearing babies is a new field and only a few people have experience working with infants. As newborn hearing screening identifies younger children, it is essential to promote the information that has been published in Colorado and nationally to support choices in communication methods and the objective criteria that guide this choice.

Limited funding makes it difficult for all children to receive amplification by 6 months of age. In addition, some children receive amplification that utilizes old technology.

Seventy-seven percent of audiologists do not receive a course in counseling in their preservice training program (Matkin, 1997). Consequently, diagnosing audiologists need additional training in how to deliver sensitive information to the parents of babies who are suspected of having a hearing loss and who have a confirmed hearing loss.

Families frequently have three or four audiologists involved in their child's care. This can be confusing to parents. It is likely in this situation that parents receive multiple opinions on the same topic which may be contradictory.

Early Intervention: The largest early intervention program for deaf and hard of hearing infants and toddlers is housed at the Colorado Department of Public Health. Part C is housed at the Colorado Department of Education. The organization for parents, Colorado Families for Hands and Voices, operates independently. It is important for all of these agencies to meet regularly in order to support their initiatives and priorities to provide quality early intervention services statewide and to have unduplicated databases.

Colorado hires parent-professionals to meet families, provide information from a parent point of view, and to provide workshops relevant to the needs of families. At this time, the parent-professionals are only in the Denver metro area. It is important to provide this opportunity to parents statewide.

While many early interventionists in Colorado have worked with families of children with hearing loss for many years, they are consistently requesting more training to work with babies under the age of 12 months. With the implementation of newborn hearing screening, we are seeing more infants than ever before.

Families need to have access to the spectrum of communication options available to them. Parents often receive information about only one method of communication. The Colorado Hearing Resource (CO-Hear) Coordinators are available to provide the spectrum of options. The system needs to support access by all families to the CO-Hear Coordinators.

The FAMILY Assessment (Stredler-Brown & Yoshinaga-Itano, 1994) is a naturalistic evaluation protocol that was developed in Colorado 12 years ago. It is available to all families who have a child with hearing loss under the age of 3 years. This is a clinical evaluation tool. The data has also been used for research. At this time, only 60% of the families receiving early intervention are using this state supported objective assessment protocol. In order to develop an intervention program based on performance-based outcomes, it is important to have more families participate in objective assessments.

Approximately 15% of the families receiving early intervention services speak Spanish as their primary, or only, language. Access to information must be made available in Spanish .

Physicians usually do not know about program options for children who are deaf and hard of hearing. There is currently no easy access to this information.

Deaf and hard of hearing role models provide families with information about growing up with a hearing loss. While this program is available in some geographic areas of the state, they are not available statewide.

1.6.2 Identify current successful strategies to meet identified needs:
The regionalization of HCP has created opportunites to work within communities to assure community based, culturally sensitive, comprehensive systems. The Colorado Infant Hearing Advisory Board and the Task Forces provide the needed guidance to promote and enhance the entire program.

1.7 Collaboration and Coordination

1.7.1 Describe the proposed project's existing and planned methods of collaboration and coordination with other relevant agencies, oranizations, providers, family members, consumer groups, linsurers, and other partnerships relevant to the proposed project:
While the newborn hearing system is under the auspices of the CSHCN program, relationships with other organizations have been developed and maintained. The relationships with CHP+, HMOs and Medicaid impact funding for direct services. Relationships with JFK Partners, HMOs, and the Patient Advocacy Coalition impact the screening, assessment and early intervention programs. The collaboration with Part C, CSDB, MSD, and CHIP impact the early intervention system. The well established, multi-disciplinary teams operating through the CSHCN program provide the structure for implementing and refining the newborn hearing systems. Table 1 describe the existing and planned methods of collaboration and coordination in further detail.

1.8 Goals and Objectives:

1.8.1 Identify project goals and objectives which are responsive to the goals of this priority and the perceived needs and strengths/resources of the target population.
Goals, objectives and activities in the areas of screening, assessment and early intervention will be undertaken. The major goals for each area are:

Screening: Increase return for follow-up after discharge. 2) Reduce high refer rates at discharge in individual hospitals to 4% or less. 3) Identify the outpatient medical home for follow-up at discharge. 4) Increase the number of infants who receive diagnosis evaluations by three months of age. 5) Increase the number of infants who are home birthed that will receive a screening.

Assessment: 1) Develop comprehensive, community-based diagnostic and amplification services to reduce the number of providers for families and provide easy access to services. 2) Increase the number of audiologists with pediatric expertise. 3) Assure families have access to public/private funds to pay for services. 4) Assure referral to the CO-Hear Coordinators within 48 hours of diagnosis to comply with the Part C federal regulations. 5). Increase Audiologists awareness of communication options and services (e.g. Part C, DDS). 6) Provide training to audiologists in areas of counseling families. 7) Assure families have materials in their language and/or interpreters available. 8) Develop regional centers for multidisciplinary evaluations.

Early Intervention: 1) Develop a Regional Deaf Role Model Program. 2) Offer support to families through a regionalized network of parent advocates that function statewide. 3) Create and fund training for professionals working with infant. 4) Offer information and provide access to families on all communication options. 5) Increase the participation of the number of families who participate in the FAMILY Assessment to objectively measure developmental outcomes. 6) Provide parent support to families who speak only Spanish. 7) Increase physician/medical home awareness of the system and their participation. Table 2 contains Goals that are "in-kind", Attachments F and G contain the Goals for this Project.

1.9 Required Resources

1.9.1 Describe what resources, in addition to those existing, that are needed to accomplish the stated goals and objectives; Provide assurances that grant funds will be used only for the purposes specified and that necessary fiscal control and accounting procedures will be established:
Although many of the Goals and Objectives will be met through inkind FTE (attachment) a small percentage (.15) FTE is required to assure the coordination of services between the University of Colorado and the Colorado Department of Public Health and Environment, Health Care Program for Children with Special Needs. CDPHE. In order to support the infrastucture for the Parent Coordinator and the Regional Parent Coordinators, additional FTE is required. The Electronic Birth Certificate Data Management System to assist with evaluation will be further developed by in-kind funding through CDPHE/HCP. A small amount of consultation time is required to provide a needs assessment for establishing Regional Genetic Clinics throughout the state for families who infants are identified with hearing loss. Additionally, the Grant requires travel to Washington D.C. one time each year.

1.10 Project Methodology

1.10.1 Describe the methodology by which the project will be carried out. Include a description of the overall model for addressing goals, objectives, and coordination of activities.
This project proposes to have three coordinators whose responsibilities will be to provide technical assistance to the state's Newborn Hearing Systems and to assure interagency collaboration. Technical assistance will be supplied in the following areas: 1) Screening 2) Assessment 3) Early Intervention 4) Parent input and support. Assistance will be provided through statewide on-site, as well as distance-based (video and teleconference) workshops, telephone calls, correspondence, and training manuals. Regional Parent Coordinators will be hired and trained, as well as a Spanish speaking parent coordinator for the State. Specific activities, timelines, personnel responsible, and outcome evaluations are outlined in Table 2. The Project Activities Time Allocation Table (Attachment F) and Personnel Allocation Chart ( Attachment G) are on the next pages.

1.11 Plan for Evaluation

1.11.1 Describe the plan to evaluate the impact of the project: Describe the plan to monitor and evaluate the efficiency and effectiveness of the proposed program including relationship of the plan to each of the goals and objectives:
The evaluation of this project will be demonstrated in a variety of ways. Evaluations by participants of workshops and conferences will be analyzed and reported. The Electronic Birth Certificate Data System will report information in the areas of screening, diagnosis, and early intervention. Performance outcome data for children in early intervention will be collected at the University of Colorado and disseminated. Progress made in development of parent leadership programs will be collected, analyzed and reported annually. Evaluation measures for each specific activity may be found in Table 2 .

References:

American Academy of Pediatrics Policy Statement: Newborn and Infant Hearing Loss: Detectiona and Intervention (RE9846), Pediatrics, 103 (2), 527-530.

Joint Committee on Infant Hearing Position Statement 1994, Pediatrics, vol.95 No.1 January 1995

www.colorado.edu/slhs/mdnc