MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT
Project Title: Refining and Coordinating Services to the Medical Home following UNHS
Project Number: CDFA 93, 110ZZ
Project Director: Ellen Kurtzer-White. MS CCC-A Phone: (401) 222-4013
Organization Name: Rhode bland Department of Health, Division of Family Service
Address: Cannon Building Room 304
Three Capitol Hill
Providence, Rhode Island 02908-5097
Contact Person: Ron Calderone Phone (401) 222-2312
Fax: (401) 222-5957
E-Mail/World Wide Web Address: www.health.state.ri.us
Project Period: 4 years From; 6/1/00 To 5/31/04
Current Budget Period: From: 4/1/00 To 3/31/04
PROJECT ABSTRACT
1.1 Summary of Project Narrative
Rhode Island's fully implemented universal hearing screening program is recognized as a model program of service delivery and system development. The organizational setting, the Department of Health (DOH) has positively contributed to the program's success, innovation and forward-thinking activities. Key program components are administered through the Office for Children with Special Health Care Needs (CSHCN) within DOH's Division of Family Health: Genetic Disorders; Disabilities and Health; Part C, IDEA Early Intervention Program; Newborn Screening including universal newborn hearing screening (UNHS). Consequently, important linkages between UNHS and those programs evolved to create a system of service provision for all families whose babies have been identified with hearing loss. The Department of Health and the Division of Family Health would therefore be the lead agency responsible for the proposed project, "Professional Development for Improved Services to Families" and the Project Director, Ellen Kurtzer-White.
A responsive continuum of care beginning with identification of hearing loss and initiation of appropriate early intervention by age 6 months to transition into educational programs at age 3 years is critical to the success of the screening program. Although the necessary system elements are in place, the need for (1) continued training in the critical areas of mental health and best audiologic practice and (2) access to services specifically for children with hearing loss persists. Families have frequently expressed stress and anxiety resulting from the diagnosis of hearing loss; audiologic findings and recommendations that are inconclusive, contradictory, or inconsistent; or when specialized speech-language-hearing services are difficult to procure. The purpose of this project is to refine the hearing screening program into a cohesive system that provides parental support by (1) addressing the mental health issues that are typically precipitated by the diagnosis of hearing loss; (2) assessing and implementing protocols for best pediatric audiologic practice, minimizing inter-tester variability and subsequent parental stress; and (3) creating opportunities for partnership building, professional training and skill building activities across all systems elements. An anticipated result would be the recognition that the dynamic of mental health and family is central to all intervention, including the diagnostic process.
Rhode Island has achieved both the Healthy People 2000 Goals and the Joint Committee on Infant Hearing recommendation by screening more than 95% of all newborns in the state, decreasing the mean age of hearing loss confirmation to 3.5 months and amplification to 5.7 months (Vohr. et al. 1998). However, weak links in the system have prevented the state from fully realizing other critical programmatic goals: a system of follow up and management as recommended by the National Institute of Health (Nil!) Consensus Statement and family-centered services as emphasized by Title V. Surveys have indicated that families coming through the newborn hearing screening and diagnostic process in Rhode Island experience increased anxiety, arc concerned about fragmented services and are in need of information and advocacy services. Parents who are in emotional crisis because of the diagnosis of their child's deafness may not have the psychological energy to fully connect or communicate with their child (Koester and Meadow-Orlans 1990; Schlessinger 1987). Feelings of powerlessness and incompetence are common and may negatively influence early parent-child interaction (Meadow-Orlans, Bodner Johnson and Sass-Leher 1996) and subsequently the language-learning environment. Currently, there is no Maternal Child Health research grant.
The overarching goal of this project is to strengthen linkages among existing system elements so that community-based, comprehensive services are coordinated and integrated into a system of seamless care by (1) assuring the child's medical home and family support are adequately trained in issues related to hearing loss and deafness; (2) assuring that early intervention initiated by 6 months is appropriate; and (3) assuring that audiologists have access to information regarding best practice technology. Improved quality of services to families and young children with hearing loss would result. The Project Director will develop mechanisms for collaboration across professionals and agencies, data collection, information sharing, professional training, parent education and advocacy to affect system changes and establish consistent patterns. Series of workshops targeting audiologists and speech-language pathologists,. early intervention personnel, physicians, and mental health specialists will be planned, will) opportunity to cam CEU's as incentive. A team representing the primary systems elements (Early Intervention. RIHAP. School for the Deaf. Family Guidance. CSHCN) will meet with the Project Director at least quarterly to assess progress and to identify specific problem areas and action plans.
Title V outcomes and achievement of project goals and objectives will be evaluated by data analysis, revision of hearing screening protocols, activities of the Quality Assurance Committee and the RIHAP Screening Follow Up Committee. Direct measures, such as training workshop pro- and post-tests, learner outcome surveys, surveys of targeted populations, parent interviews and questionnaires, changes in activity and function of the Audiology Network along with policy changes will be analyzed and reviewed.
1.2 Text of Annotation
This project will improve follow-up services to families whose children have been identified through UNHS by: strengthening linkages of all systems elements and training service providers to assure that early intervention services are family centered and meet the unique needs of this population. The challenge of responding to family mental health issues typically precipitated by the diagnosis of hearing loss will he addressed.
1.3 Key words
Universal neonatal hearing screening, Early intervention, Family centered services, System linkages, Parent needs and support
SECTION II - PROJECT NARRATIVE
2.1 Purpose of the Project
Rhode Island's universal newborn hearing screening (UNHS) program has successfully reached its programmatic goals and objectives, and, as such, has provided a nationally recognized model for neonatal hearing loss detection. Comprehensive newborn screening has significantly reduced the mean age of identification, which has, in turn, presented new challenges for Early Intervention (EI) programs in their attempt to provide and coordinate the necessary support to the medical family. Providing parental support has become a programmatic priority, thus a mechanism to assure that all system elements adapt a family-centered approach that is sensitive to the specific needs of children with hearing loss is needed. This project will serve as that mechanism.
Parental needs during the early stages of diagnosis and intervention have been identified in the literature (Luterman and Kurtzer-White 1999; Roush and Matkin 1994): access to complete and unbiased information; parent support groups and counseling; competent, compassionate professionals who can deal with parental emotional response to the diagnosis; and easy access to specific services for children with hearing loss. Rhode Island families demonstrate these needs, as well as demonstrated in a 1998 survey of 50 families that indicated 78% of the families required counseling/support groups; 83% required information about hearing loss management, 80% required information about communication development and options; and 22% needed advocacy for speeding up the diagnostic process. Moore et al (1997) surveyed families of 26 children with diagnosed hearing loss at critical time points and found that families of children with hearing loss experience increased anxiety as they proceed through the screening and diagnostic process. Anxiety plays a disruptive role in family life; however, family support sources reduce such anxiety (See Needs Assessment). It has been our clinical experience that families also become anxious when: they negotiate their way through the system to access services; when specific services (e.g. speech therapy) are difficult do obtain; or when audiologic diagnosis and recommendations are untimely, inconclusive or contradictory.
The purpose of this project is to improve follow-up service to families whose children have been identified at a very early age. This will involve training of the professional community (audiologists, early intervention service providers, pediatricians, speech therapists, etc.), and it will also address the mental health issues typically precipitated by the diagnosis of hearing loss by refining Rhode Island's hearing screening program into a more cohesive system. Linkages between the screening program, audiology networks. Early Intervention, medical homes, educational systems and families will be strengthened. These linkages will assist in (1) assuring that the child's medical home and family support providers are adequately trained in issues of childhood deafness and hearing loss; (2) assuring that participating audiologists have access to protocols for best pediatric practice, minimizing inter-tester variability and subsequent parental stress due to conflicting information; and (3) finding and accessing mental health services for families through early intervention. Opportunities for partnership building, professional training and skill building activities across all systems elements will result in: (1) the recognition that the dynamic of mental health and family is central to all intervention, including the diagnostic process and (2) improved services specific to children with hearing loss and their families. Parent groups and counseling, educational/informational programs on issues related to hearing loss, and appropriate services would be established. Anticipated outcomes include (1) services that are organized in ways that families can easily access and use, (2) increased parent satisfaction, (3) increased parental ability to advocate for their children and to participate in decision-making, and (4) improved parent-child communication and interaction as a result of decreased parental stress.
2.2 Organizational Experience and Capacity
In 1993, Rhode Island became the first state in the nation to legislate universal newborn hearing screening. Since then, 99% of the state's newborns (14,000 annually) have their hearing screened. As of January 1998, more than 63,000 infants had participated, and 2 to 3 per thousand have been identified as having varying degrees of permanent hearing loss. Rhode Island's average age of diagnosis of hearing loss during 1998 was 3.5 months, compared to the national average age of 30 months. The Rhode Island Hearing Assessment Program (RIHAP) has achieved both the Healthy People 2000 Goal and the recommendation of the Joint Committee on Infant Hearing Screening.
Because Rhode Island has had the most experience and success in statewide neonatal universal hearing screening, we participate in national activities in leadership roles. We have consistently participated in DSHPSHWA's annual meeting, generating consensus statements and recommendations to the American Speech-Language Hearing Association. Mr. Ron Calderone (Office of CSHCN) and Ms. Mary Jane Johsnon (Rhode Island School for the Deaf) have presented papers at the Center for Disease Control, Atlanta. Dr. Betty Vohr (Women and Infants Hospital) has authored numerous articles and has presented papers internationally on the issues of universal hearing screening. Rhode Island is also a member of the Colorado Maternal Child Health research grant.
The universal hearing screening program, KidsHearing/RI is a multifaceted collaborative, community-based system that facilitates newborn hearing screening, diagnosis, and intervention. The components and partners within this system are described below (Kurtzer-White and Johnson 1999).
2.2.1 The Rhode Island Hearing Assessment Program (RIHAP)
RIHAP, based at Women and Infants Hospital in Providence, is the program that carries out the legislated mandate for newborn hearing screening on a daily basis, under the direction of the Rhode Island Department of Public Health. RIHAP manages the process of screening all infants born in any of the state's eight participating hospitals as well as maintaining an information management system that tracks patients and their screening outcomes. The RIHAP audiologists provide clinical oversight and training to all screening staff including: registered nurses, licensed practical nurses, nurses' aides and technicians. A two-stage screening protocol is utilized, with Stage I involving transient evoked otoacoustic emissions (TEOAE) as the primary screening tool. Infants for whom TEOAE cannot be completed or who do not meet the pass criteria enter Stage 2 of the screening process. RIHAP contacts families after discharge and informs them that they should return when their infant is two to four weeks old for screening by automated auditory brainstem response audiometry (AABR). Should pass criteria still not be met, infants are referred for diagnostic audiologic assessment through their local community based sites. Information management of infants at risk is critical, especially after hospital discharge. RIHAP's information system has an automated function that generates correspondence 6 months after discharge to remind families to schedule a diagnostic visual reinforcement audiometry and to offer assistance with scheduling at community audiology diagnostic sites. Rl has developed electronic data transfer protocols among RIHAP, the tertiary care center, and the Department of Health's centralized preventive health pediatric information system. Such a system facilitates the tracking of infants with late onset hearing impairment.
RIHAP audiologists play an important role in the first contacts with parents and provide critical audiological information to families, diagnosticians and service providers.
2.2.2 KIDS NET
KIDS NET is a computerized information management system that tracks children's public health preventive services, with the mission that all Rhode Island children receive comprehensive screening and follow up for public health preventive services. Some of the services provided by KIDS NET include generating reminders to families when children are due for well-child visits or are overdue for vaccinations; providing information to pediatric providers on-line. In terms of its role in the hearing screening program, KIDS NET Family Outreach Program provides community based outreach and home visits to assist RIHAP in locating or contacting a family in need of RIHAP services or medical intervention. KIDS NET also makes RIHAP hearing screening results and audiological recommendations available electronically to pediatric care providers for babies born on or after January 1, 1997.
2.2J Audiology Network
Universal newborn hearing screening precipitated an acute need for quality follow up services by competent pediatric audiologists. Each member of this network of certified audiologists, whether employed in private practice, clinic, or hospital - based facility, has committed to enhancing and improving pediatric audiology in Rhode Island. This network is a diagnostic and follow-up resource to families and professionals.
2.2.4 Early Intervention
The Early Intervention Program (EIP) with its five regional centers promotes the development of infants and toddlers with developmental challenges and is designed to serve eligible children from birth to age three years and their families. Early Intervention helps to identify families' needs and appropriate services through the development of an Individual Family Service Plan (IFSP) based on evaluation recommendations. Those services are to be delivered in a family-centered approach. The strongest component of the early intervention program is the important role the parents play in the development of the IFSP and the delivery of services to their child. Seven parent consultants, employed by the Department of Health facilitate family participation and are providing services in the five Early Intervention Programs. Specifically, they work closely with families, assisting them through the El process and transitions. They also contribute to the development and revision of program policies. At a minimum, each EIP has access to at least one parent consultant.
2.2.5 Family Guidance Early Intervention Program
The Family Guidance Program at the Rhode Island School for the Deaf is an early intervention program designed exclusively for families who have children with hearing loss. Its professional staff (teachers of the deaf, educational audiologists, speech language specialists, psychologists, counselors, and visual communication instructors) have expertise in early childhood deafness, hearing loss, and speech and language development. It provides families support, guidance and information to empower them with the knowledge and skills needed for making decisions and advocating for their young child. Initial referrals to Family Guidance come from RIHAP and the Department of Health immediately following the infant's failing the newborn hearing screening. The staff works collaboratively with the Early Intervention Center serving the family's community to set goals and identify services that are appropriate to the family and child's needs. The Family Guidance staff provides both center and home based services for parent support and to help facilitate early communication and language development.
Families may be assisted in the process of obtaining appropriate amplification and technology, locating knowledgeable speech-language pathologists, and arranging for further evaluations when warranted. Other available services provided by the Family Guidance Program include: family/parent support groups; parent-to-parent networking; parent-child communication training; guidance in understanding the many and diverse facets of deafness; audiological assessment and management; auditory training; family sign language classes; deaf mentoring; toddler groups and extended day and day care programs.
2.2.6 The Rhode bland Infant Hearing Screening Advisory Committee
A mechanism to link each of the existing resources into an integrated system and add the most important component of the system- the parents was developed. The Rhode Island Infant Hearing Screening Advisory Committee was established as part of the RI legal mandate to provide regulatory oversight of the state system of newborn hearing screening and to serve in an advisory capacity to the Rhode Island Director Of Health. Members of the committee represent audiology, pediatrics, insurance, special education, hospital neonatal nurseries, the Deaf community and the Rhode Island Department of Health. An important function of this committee is to provide professional training regarding newborn screening through an annual conference. The RIHAP Symposium has become a well-recognized and respected continuing education opportunity for practitioners with leading experts presenting papers on current trends and research.
2.2.7 The Rhode Island Infant Hearing Screening Follow-Up Committee
The Rhode Island Infant Hearing Screening Follow-Up Committee functions as a working committee that addresses the practical issues facing parents and professionals vis a vis newborn identification. It was developed to identify and address gaps in services and access barriers for families and professionals; facilitate the process of obtaining funding for amplification; develop protocols in the referral process; develop legislation to facilitate changes in the system; coordinate tracking infants; and to provide educational material to the public. Comprised of 25 members, a wide array of professionals, families, agencies and advocacy groups are represented, including RIHAP, pediatrics, early intervention, audiology, speech therapy, mental health, deaf community, Alexander Graham Bell, Family Outreach, Department of Education and most importantly, parents.
One example of the work that the Follow-Up Committee has recently completed is their monthly Quality & Assurance study. This study group involved early interventionists, audiologists, parents and educators in a chart review. Quarterly, RIHAP identifies those families who should have entered the early intervention system. This list is electronically checked by the early intervention database. The study group visits each regional early intervention center and reviews the family's record. This process provided the members with an opportunity to review records documenting several families' journeys from screening to Early Intervention. They were able to review the initial evaluations, the resulting recommendations, and the subsequent Individualized Family Service Plan (IFSP) goals. The members were able to identify any gaps in the process and make recommendations to eliminate those gaps. This process provided many opportunities to ensure that appropriate services were accessible for each family. This Q&A study group has taken its work a step further by making recommendations to effect slight changes so that similar gaps do not occur in the future.
Although these two committees function independently they both represented a similar theme. Our efforts focused on unifying previously factional organizations by helping them identify their common goal - to develop and implement a quality system for early hearing detection, diagnosis and intervention that is based on a family - centered approach and adheres to a continuous quality improvement plan. With the leadership of the Department of Education, a Strategic Planning seminar was held over a two-year period. The Strategic Planning team's members included representatives from the Department of Health Early Intervention Program, the Department of Education, teaching and administrative staff from the Rhode Island School for the Deaf, Special Education Directors form several local communities, the Deaf community, Alexander Graham Bell Association, parents, community audiologists, the Rhode Island Hearing Assessment Program, and legal advocates. This committee's goal was to determine the mission, beliefs and action plans necessary to accomplish our goals in a five-year plan.
2.3 Administration and Organization
Within the Rhode Island Department of Health, the Division of Family Health works according to the Title V mission to develop family-centered, community based, culturally competent, coordinated and effective systems of care for all children and families. The Office for Children with Special Health Care Needs (CSHCN) is within the Division and is the umbrella for: Genetic Disorders; Disabilities and Health; Part C, IDEA Early Intervention Program; Newborn Screening including universal newborn hearing screening (UNHS). Consequently, UNHS has important linkages to the other programs within CSHCN creating opportunities for a system of service provision for all families whose babies have been identified with hearing loss. The Department of Health and the Division of Family Health would therefore be the lead agency responsible for administering the proposed project, "Professional Development for Improved Services to Families" and the Project Director, Ellen Kurtzer-White.
2.4 Available Resources
There presently exists a wide network of linkages between programs within the Division of Family Health itself and between numerous state and private agencies and organization, therefore, in-kind resources for this project are extensive and include use of facilities, support services, staff and administrative support from: the Department of Health, the Department of Education, Early Intervention, RIHAP, Women and Infants Hospital, the Rhode Island School for the Deaf, the University of Rhode Island. The Project office will be based at the Rhode Island School for the Deaf, which will also provide telephone, computer and internet access. Key members of personnel from various systems elements have agreed to participate in the project implementation and evaluation:
There are several community-based resources that the project will be able to access, also. Rhode Island Parent Information Network (RIPIN) is a key information disseminator for parents and children with special needs. The agency also develops parent support networks and provides advocacy services. The Governor's Commission on the Deaf and Hard of Hearing (sic)
2.5 Identification of Target Population and Service Availability
The ultimate target population of this project is young children with hearing loss and their families. However, it is also necessary to target those populations that are intricately linked to and interface with families to affect the necessary system-wide changes. Activities to address the goals of the project will be directed to audiologists, physicians (pediatricians, family practice physicians, and otolaryngologists), speech-language pathologists, early intervention directors and service coordinators, mental health specialists, parents and caretakers who are part of the system of identification, follow-up and intervention. Members of the medical home are typically on the "front line," giving parents initial information that is difficult for them to accept and understand. Those first encounters mark a family's entry into the public health system and can have significant impact on outcomes.
The diagnosis of early childhood hearing loss typically precipitates a grief response in parents, thus identifying audiologists and other healthcare professionals need to be able to respond appropriately. However, the majority of audiologists in the United States have not had counseling courses (Culpepper) and tend to define parent counseling in terms of information dissemination rather than emotional support. Audiologists have the additional professional challenge of staying current with the explosion of technological advances in amplification systems and fitting paradigms so that their recommendations reflect best practice. Pediatric audiologists who provide diagnostic and follow up services to infants require continued and specific training, if they are to facilitate parental acceptance of the hearing loss. In addition, they must stay abreast with current research so that early amplification that they fit is appropriate and optimal for the development of auditory perception and oral language.
Because the incidence of childhood hearing loss is low, other members of the medical home may have little or no experience with the specific needs of these babies and their families. As a result specialized services by knowledgeable professionals are often difficult to contract. Families trying to navigate through the system are often dissatisfied with services and may feel more anxious as a result.
There are several existing services and supports in Rhode Island that can be accessed to address these issues. The Comprehensive System of Personnel Development (CSPD) provides in-service and preservice training to staff in Early Intervention and is an available resource to this project. A volunteer network of audiologists, which was established in response to the increased demands of the newborn hearing screening program, represents audiologists in the community who provide important diagnostic and follow up. The Follow-Up and Advisory Committees lend direction and guidance to the provision of quality services. There are active chapters of the American Academy of Audiology (AAA) and the American Speech-Language Hearing Association (AAA). Both provide a forum for consensus building and continuing education at the local and national levels.
2.6 Needs Assessment
Needs assessments for universal hearing screening programs have been administered nationally and locally. In 1996-1997, the Marion Downs National Center conducted a baseline needs assessment to establish the status of newborn hearing screening, diagnostic audiology services and intervention programs participating in a Maternal Child Health Bureau grant. Survey results indicated that although participating states have made progress in achieving the goals of universal newborn hearing screening, there appears to be a lack of readily obtainable or effective services for both assessment and intervention. Results also indicated that participating states do not have coordinated systems linking universal screening programs to diagnosis and intervention. Rhode Island participated in this survey, with 8 audiologic centers and 3 early intervention agencies responding. There are more than 20 audiologists listed in the State Audiology Network and clearly a more representative sampling of current audiologic practices is necessary. Although surveys of El programs also represent a very limited sample, the results indicated a continued marked contrast between the capacity of the Family Guidance Program through the Rhode Island School for the Deaf and the other two programs.
When universal newborn hearing screening became legislated in Rhode Island, the numbers of families in need of services tripled within 2 years, but the system was unprepared to meet the unique intervention needs of these children and families. As a result, the Rhode Island School for the Deaf extended its staffing and resources to become the ad hoc EI agency for this population. The Family Guidance provides direct services and in-service education, however families would benefit from the additional contributions of better trained EI service providers in the community. In an unpublished 1999 study, Kurtzer-White found similar El training needs in bordering Massachusetts. Surveys were sent to all El programs in the state, asking professional staff to rank their confidence in their knowledge and competence in key areas such as parent counseling, parent training, establishing early speech and language programs, audiologic information, hearing aid management and cochlear implants. Mean responses of the 105 returned surveys indicated that El service providers had low confidence in their knowledge and skill in all these areas.
As mentioned earlier, 78% of the families in a Rhode Island Survey required counseling/support groups; 83% required information about hearing loss management, 80% required information about communication development and options; and 22% needed advocacy for speeding up the diagnostic process. In another Rhode Island study, Moore et al (1997) surveyed families of 26 children with diagnosed hearing loss. Parental anxiety was assessed at critical time points across the screening and diagnostic spectrum using the Family Support Scale and the Impact of Chronic Illness Scale. The investigators found that 46% of parents at the initial screen, 50% at the rescreen and 58% at the diagnostic stage described themselves as being "worried" to "very worried." At the initial screen, decreased parental anxiety was correlated to high total support scores and high immediate family support. Increased anxiety was correlated to increased disruption in planning and heightened family burden. At the diagnostic stage, decreased anxiety was correlated to a high "total support" score. The authors concluded that families of children with hearing loss experience increased anxiety as they proceed through the screening and diagnostic process. Anxiety plays a disruptive role in family life; however, family support sources reduced such anxiety. It has been our clinical experience that families respond with heightened anxiety, anger and confusion as they try to negotiate their way through the system to access services. We have also seen this parent response when the diagnosis and recommendations are inconsistent from audiologist to audiologist.
In summary, previous needs assessments indicate that there is a gap between families' needs for special services and trained professionals who can confidently and competently provide them. This is true for intervention services but farther data is needed to assess audiology services. Future proposed needs assessment activities include: (1) assessing parental satisfaction and recommendations for improved services including intervention and audiology; (2) assessing family support needs; (3) surveying Rhode Island's EI personnel to obtain baseline data of their confidence, competence and training needs; (4) surveying and analyzing responses of all members of the audiology network regarding their clinical and family-centered practices and their training needs; (5) surveying members of the medical home, regarding their need for informational/educational training; and (6) identifying a network of mental health workers who can interface with early intervention to respond to parental needs.
2.7 Collaboration and Coordination
The Department of Health and the Department of Education have developed a broad strategic alliance, based upon their common agendas of education, disease prevention, and long-term population-wide investments in a healthy and productive society. The Department of Health also has the mandate and responsibility under IDEA to identify and respond to developmental challenges for all children within the first three years of life. This project will be the purview of Department of Health, and collaboration and coordination within the department is both necessary and achievable.
The success of this project is predicated in part on the ability of the Project Director to establish and sustain relationships with professionals in the community involved in various facets of newborn hearing screening. The Project Director and the Director of Early Intervention will meet regularly to plan training activities based on needs assessments, determine mechanisms for implementing and evaluating changes in early intervention services as a result of training, and determine mechanisms for disseminating information. The Project Director will also meet regularly with the audiology coordinator from RIHAP to facilitate information flow between the screening program and EI, including Family Guidance and other system elements. The Department of Health has also entered into an interagency agreement with the Department of Education and the Rhode Island School for the Deaf for the purpose of establishing a program for families with children, birth through age two with sensory impairments. The agreement covers planning, implementation, and evaluation of training programs for professionals, para-professionals and parents in effective intervention strategies. The Project Director will meet regularly with the Family Guidance Coordinator and staff of this early intervention program to identify needs, action plans and outcome measures.
The Project Director will be a member of The Rhode Island Hearing Screening Follow-Up Committee, an interagency, working committee that addresses the practical issues facing families and professionals resulting from the implementation of universal neonatal hearing screening. This 25-person committee represents a diverse group of professionals, families, institutions of higher education, private and public agencies, advocacy groups and state agencies including the Department of Health ad the Department of Education.
The Project Director will participate in the Partnership with the University of Rhode Island. This partnership is among faculty from varied disciplines at URI such as human development and family studies, psychology, education, communication disorders, physical therapy, cooperative extension and the Department of Health's Early Intervention System. By linking academicians and practitioners, the delivery of quality Early Intervention services to children and families is assured. URI faculty lends their expertise in program evaluation, preservice and in-service professional development and grant writing to the Early Intervention System.
2.8 Goals and Objectives
All of the system elements that are necessary to provide a full array of services to families whose children have hearing loss already exist in Rhode Island. However, communication and interaction among those elements is needed to form a cohesive system. Addressing the training needs of the many service providers who may interface with families and young children will ultimately result in improved services for both parent and child, reduced parental anxiety, and increased parental satisfaction with service provision. The following goals, objectives and activities will result in a refined newborn hearing screening program that better meets the needs of the identified families.
Goal 1: Strengthen linkages among existing system elements by assuring that the child's medical home and family support are adequately trained in issues of bearing loss, deafness and family-centered practices
Objective 1.1 Identify members of medical home involved in the early identification, diagnosis and intervention of infants with hearing loss and their families
Activity 1.1.1 Consult with OSCHCN to create lists/database of appropriate physicians, service providers, and professional organizations
Objective 1.2 Create a working committee with parent/consumer and agency representation to attain this goal
Activity 1.2.1 Consult with programs and agencies to identify parents, members
Activity 1.2.2 Establish relationships with providers in medical home
Activity 1.2.3 Schedule meetings to address goals, needs, activities and progress
Outcome: A formal partnership of systems elements to address the project's goals
Objective 1.3 Create and administer a needs assessment tool to professionals who are members of the medical home to determine: current knowledge and skill base in issues relating to early childhood hearing loss; referral patterns for parent support; referral patterns for early intervention recommendations; attitudes and biases in terms of methodology; family-centered practices (First 6 months)
Activity 1.3.1 Identify/create appropriate assessment tools
Activity 1.3.2. Administer, collect and analyze surveys
Activity 1.3.3 Disseminate survey results to participants
Objective 1.4 Systematically address informational/educational needs based on surveys
Activity 1.4.1. Plan and hold series of training workshops on range of topics related to hearing loss for targeted populations, ex. Pediatricians, social workers and mental health workers, etc. (link with RIHAP Annual Conference)
Activity 1.4.2 Provide individual support, workshops, in-service to subgroups (First 6 months)
Activity 1.4.3 Analyze/Evaluate learner outcomes through pre and posttests
Objective 1.5 Systematically influence family-centered approaches across all service providers involved in the diagnosis and intervention of infants and toddlers with hearing loss
Activity 1.5.1: Plan and hold workshops addressing parental response and needs
Activity 1.5.2 Analyze/Evaluate learner outcomes through pre and posttests
Outcome: Providers with increased knowledge base and sensitivity
Outcome: Improved parent satisfaction with services because of increased support.
Outcome: Parents involved in decision making throughout the system
Objective 1.6 Create Needs Assessment tool specifically for families identified through UNHS in RI
Activity 1.6.1 Hold focus group to involve parents in development of questionnaire
Activity 1.6.2 Target group for pilot survey
Activity 1.6.3 Analyze questionnaire and modify if necessary
Activity 1.6.4 Administer survey
Activity 1.6.5 Analyze results
Activity 1.6.6 Disseminate information
Activity 1.6.7 Meet with Advisory Team to process and revisit project goals, if necessary
Outcome: Parents' needs and recommendations will be more clearly defined
Outcome: Project's activities will respond to parental response, refining the hearing screening program and intervention program.
Outcome: Future families identified through UNHS will be better supported and more satisfied with services.
Early intervention programs have the potential to positively impact quality of life issues for children and parents if personnel are skilled and sensitive to the specific needs of families with hearing impaired children. By addressing the training needs of El service providers, positive outcomes can be realized for families. Specific knowledge areas and increased sensitivity to family needs for support and mental health services are addressed through the project's activities.
Goal 2: Assure that the program of early intervention initiated by 6 months is appropriate.
Objective 2.1 Participate in El directors meetings
Objective 2.2 Identify or create and administer a needs assessment tool for EI personnel and directors to determine: current knowledge and skill base in issues relating to early childhood hearing loss and family-centered practices; referral patterns for parent support, treatment patterns for early communication, speech, language and hearing intervention; attitudes and biases in terms of methodology (First 6 months)
Activity 2.2.1 Analyze survey and identify training needs
Activity 2.2.2 Disseminate information to El directors, OCSHCN
Objective 2.3 Establish a series of workshops to address El needs in conjunction with CSPD on the anticipated topics of early communication development and hearing loss: understanding audiologic information; early use of amplification devices; developmentally appropriate strategies for early communication development in very young children with hearing loss, developmentally appropriate early auditory training and speech stimulation. (Topic areas subject to change based on results of needs assessment).
Activity 2.3.1 Analyze/Evaluate learner outcomes through pre and posttests
Activity 2.3.2 Disseminate information to El directors, OCSHCN
Outcome: Increased knowledge and skill base by service providers
Outcome: Improved parent satisfaction because of access to knowledgeable service providers
Objective 2.4 operationalize family-centered approaches across all service providers involved in the diagnosis and intervention of infants and toddlers with hearing loss
Activity 2.4.1 Hold a series of workshops to increase professional sensitivity to parental emotional response
Activity 2.4.2 Evaluate learner outcomes
Activity 2.4.3 Evaluate change through chart review, observations of mental health recommendations at IFSP
Activity 2.4.4: Link trained parent advisor to families, diagnostic centers, RIHAP
Objective 2.5 Easier access to mental health services and support for families whose children have hearing loss
Activity 2.5.1 Survey mental health agencies to identify network of mental health workers sensitive to families with hearing loss
Activity 2.5.2 Link with mental health agencies to provide informational/educational workshops if needed
Activity 2.5.3 Revise, produce and disseminate list of mental health providers to Audiology Network, RIHAP, members of the medical home
Objective 2.6 Initiate pilot study to evaluate effectiveness of providing mental health services through parent support groups in the local community
Activity 2.6.1 Target one El region for pilot study; establish agreement
Activity 2.6.2 Administer screening tool to assess parental emotional response and administer to all families referred by UNHS
Activity 2.6.3 Establish experimental and control groups
Activity 2.6.4 Establish weekly parent support group led by trained mental health worker.
Activity 2.6.5 Re-evaluate at critical rime points
Outcome: A model for provision of family support and mental health services will be created
Outcome: Parents will participate is decision making at all levels and will be satisfied with the services they receive
Objective 2.7 Mitigate obstacles to access of services for families, including those created by inadequate insurance provisions, specifically mental health services for parents and caretakers and speech-language and audiologic services for children including therapy and technology.
Activity 2.7.1 Create a working committee to attain these goals, comprised of parents, advocates, and providers
Activity 2.7.2 Link with existing consumer advocacy groups in the community, such as Self Help for the Hard of Hearing and other state projects, such as TechAccess
Activity 2.7.3 Investigate current insurance practices/reimbursement for services and technology
Activity 2.7.4 Investigate other models of service delivery, ex. Colorado, Connecticut and Texas
Activity 2.7.5 Identify obstacles to access
Activity 2.7.6 Strategize ways to impact on systems barriers to obtain services/technology
Outcome: Parents/consumers who have information and strategies to make changes in the system and in policies, which enable them to attain necessary services and technology
Objective 2.8 Create the means for cultural or language minorities to obtain information about childhood hearing loss and deafness
Activity 2.8.1 Identify and train parents who are language or cultural matches to others to inform and provide parent support
Activity 2.8.2 Develop linkages with organizations that provide outreach and services to minority groups
Outcome: All families will have access to information and resources
Outcome: System elements will collaborate to respond to the cultural and linguistic needs of the diverse populations served in Rhode Island
Objective 2.9 Enhance speech-language services to young children with hearing loss and their families
Activity 2.9.1 Identify/create needs assessment for licensed speech-language pathologists in Rhode Island
Activity 2.9.2 Administer, collect and analyze surveys
Activity 2.9.3 Identify training needs
Activity 2.9.4 Survey training programs offering specializations in speech and language for children who are deaf and hard of hearing as well educational programs providing services to that population to identify required core competencies and knowledge bases
Activity 2.9.5 Collaborate with consultant to create curriculum/content of series of continuing education activities and/or internships with experienced providers
Activity 2.9.6 Explore training possibilities through the University of Rhode Island's Communication Disorders Department
Activity 2.9.7 Conduct training workshops
Activity 2.9.8 Evaluate changes in service delivery as a result of project's activities
Activity 2.8. Hire .5 FTE speech therapist to enhance specialized service delivery to infants with hearing loss
Outcome: Speech-language therapists with necessary specialized skills and knowledge
Outcome: Parent satisfaction with services
Audiologists have a critical role to play in the planning and implementation of all components of the system and are often the driving force inspiring change for infants and families in their communities. It is therefore necessary to assure that the Audiology Network providing diagnostic and follow up services be well trained and develop consistent, best practices. Audiologists are typically the professionals to inform parents of their child's hearing loss. This initial contact is critical and can color the course of follow up and parental response. Most audiologists have not taken counseling courses in graduate training programs and are unprepared to address parents' emotional needs at the time of diagnosis. It is critical that audiologists be skilled counselors and empathic listeners. According to Hind and Davis (1999), very early identification gives a potential which can be used positively to promote the best outcomes fort he child. However, if it is not handled well it can generate anxiety and grief and bring about negative outcomes. To ensure optimum outcomes, we need to provide appropriate and family-friendly service. The following goal, objectives and activities are recommended to address the new challenges audiologists face as a result of newborn screening and very early diagnosis.
Goal 3: Assure best diagnostic pediatric practice and family centered approaches for all audiologists participating in the network
Objective 3.1. Establish a working committee to achieve this goal
Activity: 3.1.1 Establish relationship with Audiology Network
Activity 3.1.2 Schedule organizational meetings/set agenda
Activity 3.1.3 Establish Network committee member roles and responsibilities
Activity 3.1.4 Establish relationship with American Academy of Audiology, Rhode Island Speech and Hearing Association
Activity 3.1.5 Construct database of participants
Objective 3.2. Determine current practices by Audiology Network
Activity 3.2.1: Create survey, disseminate, collect and analyze results
Activity 3.2.2: Inform Audiology Network and OCSHCN of results
Objective 3.3 Develop/strengthen Audiology Network through team-building activities
Activity 3.3.1: Establish committee to develop consensus as to responsibilities and commitments to Network
Activity 3.3.2 Develop mission and belief statement of Network
Activi'ty3.3.3: Schedule meetings for information sharing
Objective 3.4: Develop consensus as to best audiologic practice and integrate into practices of audiological network members with young children identified through RIHAP
Activity 3.4.1: Review national trends, literature, research
Activity 3.4.2: Develop guidelines for infant audiologic assessment
Activity 3.4.3 Develop guidelines for audiologic monitoring
Activity 3.4.4: Identify training/continuing education needs
Activity 3.4.5: Conduct series of training workshops to address those needs
Activity 3.4.6: Develop, review and adopt consensus statements and guidelines
Activity 3.4.7: Purchase necessary clinical equipment, such as Real Ear Analyzers with DSL capacity or insert earphones through grant funds for those Network providers who have committed to best pediatric audiologic practice.
Activity 3.4.8: Conduct training workshops for pediatric hearing aid fittings will be held for audiologists receiving equipment
Activity 3.4.9: Conduct chart reviews will be conducted to evaluate practice changes resulting from project activities
Outcome: The audiology community will function as a network of providers with shared goals.
Outcome: The audiology community will provide quality, pediatric services with a standard of care Outcome: Young children with hearing loss will be provided with optimal opportunities to develop auditory perceptual skills through the timely use of appropriate amplification
Objective 3.5: Develop family-centered practice
Activity 3.5.1 Share results of Family Needs Assessment with Audiology Network
Activity 3.5.2 Survey Audiology regarding current family centered approaches
Activity 3.5.3 Determine training needs
Activity 3.5.4 Schedule training workshops
Activity 3.5.5 Develop linkage with University of Rhode Island's Department of Communicative Disorders and the David Luterman Institute at Emerson College, Boston to seek ways to include counseling experiences into professional training programs
Outcome: Audiologists will be better prepared to offer parent support through effective listening and counseling strategies
Outcome: Audiologists will respond to family needs for unbiased information
Outcome: Audiologists will include and respect parents in all levels of decision-making
Outcome: Local training programs will prepare new professional with a level of counseling skill
Objective 3. 6: Expedite hearing aid fittings through reducing financial risk to consumers and parents
Activity 3.6.1 identify new potential financial resources
Activity 3.6.2 identify current insurance practices in Rhode Island
Activity 3.6.3 Survey other state programs to determine mechanisms for hearing aid payment and reimbursement
Activity 3.6.4 Identify barriers to procuring hearing aids on a timely basis
Activity 3.6.5 Collaborate with other local groups and programs, e.g. Self Help for the Hard of Hearing, the Governor's Commission on the Deaf and Hard of Hearing and Tech Access for information sharing and to develop strategies for affecting system change
Activity 3.6.6 Produce written information for parents regarding current resources and procedures for financial assistance
Outcome: Families will be satisfied with hearing aid services
Outcome: Children will have easy access to the services they need and families will have adequate insurance to pay for those services
2.9 Required Resources
To meet the goals of this project, funding is required for the full-time position of Project Director and part time secretary/administrative assistant. This position requires an experienced professional committed to family-centered service delivery and who has expertise in early childhood deafness, audiology, early speech and language development, systems models and adult learning. The Project Director is needed to: actively coordinate and interface with various existing system elements; develop needs assessments and training programs for targeted populations; facilitate team building among the systems elements; disseminate the information to parents, consumers and professionals; create educational/informational materials. Funding is also required to purchase a necessary computer, software and printer for desktop publishing activities and for data analysis. Funding is needed to produce quality training materials and workshops with knowledgeable speakers and session leaders. Additional costs of workshops include facilities, printing, mailing, transportation and meals for presenters, refreshments for participants and administration of CEU's. To be culturally competent, interpreters will be hired as needed for meetings and to translate written materials.
2.10 Methodology
The Project Director will develop mechanisms for collaboration across professionals and agencies, data collection, information sharing, professional training, parent education and advocacy to effect system changes. A significant amount of time is needed to establish working relationships and networks with parents and service providers, to create a sense of UNHS "team," and to help delineate critical paths for families. The project director will identify and/or create needs assessment tools and develop training materials for targeted populations (medical home service providers). Professional meetings for audiologists and speech-language pathologists targeting specific intervention issues and techniques will be planned, with opportunity to earn CEU's as incentive. A series of relevant workshops for other members of the medical home will be organized according to training needs. Collaboration with agencies, parent groups and professionals will result in ongoing consistent patterns. Focal areas of activity, knowledge and skill to be addressed through the project and incorporated into training programs include:
2.11 Plan for Evaluation
As Hind and Davis (1999) state, good outcomes from health service provision are of major importance but are difficult to measure. In working with young children with hearing loss and their families it is important to take a more pediatric health psychological approach, i.e. to assess the impact that the presence of a hearing impaired child has on the quality of family life and the social, psychological, educational and health input that helps develop good strategies for coping with communication problems. Quality of life measures are particularly salient for this child population. A quantitative technique to assess outcome measures is also needed to determine changes in areas related to quality of life resulting from intervention.
To measure the impact of this project, a parent questionnaire will be developed following the process used in the Trent study reported by Davis. The questionnaire will address broad data about family quality of life, child quality of life, child behavior and communication and satisfaction with services. The survey will be administered to families periodically to quantify changes in: (1) parental anxiety because of improved services to families and children with hearing loss and (2) quality of life as a result of a parent responsive services from knowledgeable, competent professionals and (3) parent satisfaction with services.
To assess changes in systems elements and linkages as a result of the project, direct, quantifiable measures will be made, such as number of participants in training workshops, comparisons of pre and post test results, changes in audiologic practices, changes in IFSP goals (incorporation of mental health needs into assessment). Qualitative measures will also be made, such as observations and ratings of personal bias, sensitivity to family needs and emotional support. The project will access statisticians and researchers in health care from RIHAP and Women and Infants Hospital to identify and/or develop tools and to analyze and interpret data.
| Outcome | Measure |
| 1. Formal partnership of system elements | 1a. Minutes of committee meetings |
| 1b. Review of changes in referral patterns | |
| 2. Medical home providers with increased knowledge and sensitivity | 2a. Number of seminar/workshop participants |
| 2b. Pre-post workshop tests | |
| 2c. Review of changes in referral patterns | |
| 3. Improved parent satisfaction with medical home services | 3. Parent interview, surveys and/pr questionnaire |
| 4. Parents involved in decision making services through the medical home | 4a. Parent interview, surveys and/or questionnaire |
| 4b. Chart Review | |
| 5. Early intervention personnel with increased knowledge and sensitivity | 5a. Review of IFSP goals |
| 5b. Pre and post CSPD training tests | |
| 5c. Observations during IFSP assessments and planning | |
| 5d. Number of families referred to or participating in support groups or counseling | |
| 6. Improved parent satisfaction with early intervention services | 6. Parent Interviews and surveys |
| 7. Parents involved in decision-making at all levels in service provision plan | 7. Observed parent advocacy |
| 8. Informed consumers with information and strategies for system and policy change | 8a. Number of parents in consumer groups |
| 8b. Compilation of current insurance practices | |
| 8c. Attendance at informal meetings | |
| 9. Improved access to services for minority cultures and languages | 9a. Number of identified community resources, parent advocates and trained volunteers serving cultural and linguistic minorities |
| 9b. Number of printed materials in languages other than English |
2.11.1 Job Descriptions
Project Director — The Project Director is responsible for establishing and implementing mechanisms for strengthening the linkages among a broad array of professionals, programs and agencies involved in or impacted by Rhode Island's universal neonatal hearing screening and follow up services with the anticipated outcomes of: appropriate and accessible services; parent participation in decision-making; and parent satisfaction with services. Because the lead agency for the project is the Rhode Island Department of Health, the Project Director will interface with those programs and agencies within the Rhode Island Division of Family Health and the Office for Children with Special Health Care Needs (CSHCN) that are linked to UNHS to facilitate systems change. The Project Director will also interface with other agencies that have entered into agreements with the Department of Health, including the Department of Education and the University of Rhode Island. The Project Director will collaborate with those identified programs and agencies in establishing training programs.
The Project Director will report to an Advisory Board comprised of leaders and decision makers representing various system elements.
Responsibilities include:
Minimum qualifications for this position include:
A masters degree and certification in audiology; extensive experience (10 or more years) with and knowledge of the service needs of families with infants and toddlers who are deaf and hard of hearing as indicated by previously held positions and education; expertise in family centered intervention; experience with teaching at the college level; excellent communication skills including public speaking and writing; computer skills for desktop publishing and data analysis.