District of Columbia
MATERNAL AND CHILD HEALTH BUREAU: INTEGRATED SERVICES FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROJECT ABSTRACT
Project Title: Universal Newborn Hearing Screening and Intervention: D.C. HEARS Project Number: CFDA # 93:251
Project Director: Joyce Brooks, Chief, Special Needs Unit
Organization: District of Columbia, Department of Health
Office of Maternal and Child Health
Address: 825 North Capitol, N.E., 3rd Floor, Washington, D.C. 20002
Contact Person: Joyce Brooks
Phone: 202-442-9338 Fax: 202-442-4950
E-mail: jbrooksgdchealth.com
Project period: 4 years
From: 3/31/01 to 3/30/05
ABSTRACT
Purpose: The Department of Health, Office of Maternal and Child Health (OMCH) will provide leadership to implement a model universal newborn hearing screening and intervention program in the District of Columbia. It is named D.C. HEARS. The purpose of this project is to enhance the language, academic and social skills of District children who are deaf or hard of hearing by expanding access to early identification of hearing loss and early intervention. This model will extend and coordinate the already existing hearing screening programs in the nine (9) D.C. birthing hospitals and will link the findings of the physiologic hearing screening and subsequent follow-up, diagnostic and intervention results to the medical home. In addition, this model will address several problems related to weaknesses in the current system of service delivery in the District and integrate and manage care actively across the full spectrum of services in a way that is sensitive to the needs of each child and family.
Challenges: A Needs Assessment has informed the OMCH, Special Needs Unit that not all District babies are screened for hearing loss at birth and that those babies who are, but do not pass the hearing screen, may not receive appropriate follow-up services in a timely manner. Professionals and advocates alike report that accessing needed comprehensive care is compromised by lack of awareness of appropriate services and their availability, financial constraints and poor community and family-to-family support. There is a need to establish an infrastructure for the delivery of services to deaf and hard of hearing children that will take advantage of the public and private organizations and agencies that are able to provide support.
Goals and Objectives: The driving goal of this project is to provide identification and intervention by six (6) months of age for babies who are deaf or hard of hearing so that these children may achieve communication, education and vocational competencies on a par with their hearing peers. It is expected that children who are so early-identified will, over time, decrease their use of special education facilities and increase their access to inclusion programs.
In order to achieve this long-range goal, OMCH will accomplish the following by the end of the four year funding period: 1). At least 95 % of newborns will receive physiologic hearing screening prior to discharge, with follow-up rescreen of 75% of those referred; 2.) At least 80% of those referred after a one-month rescreen will receive diagnostic pediatric audiologic assessment by 3 months of age; 3.) At least 90% of those identified as deaf and hard of hearing will receive early intervention services (including amplification) by 6 months of age, if desired by the family; 4.) The medical home will have knowledge of and access to all screening, follow-up, diagnostic and early intervention services for all infants who are identified as deaf and hard of hearing; 5.) At least 80% of tile parents/caregivers of infants who are deaf or hard of hearing will express satisfaction with the accessibility and cultural competency of services, especially the coordination of audiologic, medical and early intervention components and the transitions between them.
Methodology: OMCH will achieve this proposal's goals and objectives by 1.) Convening a Newborn Hearing Screening, Tracking and Intervention Advisory. Board who will identify priorities, provide guidance for the grant activities and, through working sub-committees, assist implementation of the work plan; 2.) Appointing a coordinator of D.C. HEARS who will monitor the screening, follow-up, identification, amplification and early intervention needs of babies who are deaf or hard of hearing; 3.) Installing a central data collection site to receive data from and to communicate to providers, especially the medical home, and to provide aggregate data as needed; 4.) Producing web-based and hard copy resource directories for professionals and families, including standards and guidelines for newborn hearing screening; sites for one-month follow-up; sites and procedures for audiologic diagnosis and fitting of amplification for infants; communication and early intervention options for infants who are deaf or hard of hearing; and, designation of a single point of entry for early intervention services; S.) Training professional providers and educators in offering culturally competent, accessible and timely services; 6.) Providing education to parents/consumers re: the availability and importance of services for children who are deaf or hard of hearing. These priorities will focus on facilitating public, private and interagency collaboration, coordination and information flow.
Evaluation: Three evaluation strategies will be employed. The first will measure process objectives, tracking adherence to the established work plan and evaluation of the deliverables. The second strategy will measure the effect the process objectives have on the outcome objectives of the project. The achievement of these outcome objectives is determined by quantitative analysis of the numbers of children screened, followed, diagnosed, and receiving amplification and early intervention within the targeted time line. Furthermore, variables associated with these aggregate numbers will be evaluated by integration into the Special Needs database of the OMCH. Finally, surveys of providers and parents will enable evaluation of satisfaction with the many components of D.C. HEARS and will enable planning for future needs of District infants who are deaf or hard of hearing.
Text of Annotation: To promote better development of language, academic and social skills, the D.C. Department of Health, Office of Maternal and Child Health will coordinate public and private agencies to assure early identification of hearing loss and early intervention for District children who are deaf or hard of hearing. The plan establishes and expands access to a model comprehensive service delivery system. A centralized data collection and management system will enable collaboration and coordination with the medical home, and providers of services, including screening sites, follow-up facilities, diagnostic and prescriptive audiologists, and early interventionists. Parents will be notified of all results and infants will be followed to case resolution. Families will be encouraged to participate in family-to-family support. A number of hard copy and web-based resource guides for both parents and professionals will be produced to facilitate. access to screening and follow-up, diagnosis, amplification and intervention. Professionals and early interventionists will receive training in providing culturally competent, accessible and timely services. A Newborn Hearing Screening, Tracking and Intervention Advisory Board, composed of professionals, parents and consumers in the field of deafness and hearing loss, and representatives of District government will, with OMCH staff, provide guidance for grant activities, as well as focus on facilitating interagency referrals and information flow.
Key Words: Newborn hearing screening; early intervention; pediatric audiology; medical home; cultural competence PROJECT NARRATIVE
3.1. PURPOSE OF THE PROJECT: As current research indicates that early identification of hearing loss and early intervention is associated -with significantly better development of language, academic, and social skills, the Government of the District of Columbia, Department of Health, is requesting funding for four years to fully implement a sustainable District-wide universal newborn hearing screening and intervention initiative: D.C. HEARS. Under the direction of the Office of Maternal and Child Health (OMCH), Special Needs Unit, this initiative will:
Screening: Currently, there is no interrelated Early Hearing Detection and Intervention (EHDI) Program in the District of Columbia. All of the nine birthing hospitals have a newborn hearing screening program: four are universal and five are selective for High Risk or neonatal intensive care (NICU) babies only. Of this latter group of hospitals, three have plans to expand to universal newborn hearing screening in the near future (See Appendix 1 ). There is no standardization for any of the newborn hearing screening programs, and, while parents and medical homes, when known, are informed of the results, there is no central registry to summarize findings and provide for follow-up. Some individual hospitals track babies who are referred for one month rescreening, but this meets with variable success. However, the challenges listed below are certainly not insurmountable, as commitment to a coordinated hearing screening program with determined follow-up was demonstrated by the participation of the birthing hospitals in the preparation of this grant.
Screening Challenges:
It is clear that the District of Columbia has the pieces of the puzzle of Early Hearing Detection and Intervention that must be fit together into a cohesive whole to reach the stated goals. While improvement is necessary within the individual components of screening, diagnosis and intervention, it is the coordination of these sub-systems that will create an effective and efficient District program for children who are deaf and hard of hearing. Therefore, the following plan will be implemented:
3.2. ORGANIZATIONAL EXPERIENCE AND CAPACITY: Under the District of Columbia Newborn Screening Requirements Act of 1979, the Department of Health established a premiere Newborn Metabolic Screening Program which currently offers neonatal testing for seven (7) disorders, including: Homocystinuria; Hypothyroidism; Galactosemia; Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency; Maple Syrup Urine Disease (MSUD); Phenylketonuria (PKU); and Sickle Hemoglobinopathy. This program follows abnormal newborn metabolic screening results until case resolution and will serve as the model for D.C. HEARS. Housed in the Children with Special Health Care Needs Unit, Office of Maternal and Child Health, the Genetics Program Coordinator will provide oversight and monitoring for D.C. HEARS. It is through the experience and contacts of the Newborn Metabolic Screening Program that a volunteer committee of audiologists and early interventionists was convened to facilitate the writing of this grant proposal.
Support is requested in this grant to hire a full-time EHDI coordinator for D.C. HEARS. The Coordinator of D.C. HEARS will have a Master's degree in Audiology and the experience and expertise necessary to implement all components of the program. The coordinator will provide leadership for programs developed by the Board and will educate parents and professionals, as needed. The Coordinator will supervise a half-time assistant, for whom funding is also requested. One of the responsibilities of this staff will be the follow-up of a child missed in the initial screen or referred for a rescreen or diagnostic evaluation. They will notify parents and the medical home through telephone, mail, fax or Internet. Home visits may be arranged for non-responsive or difficult to locate families. In addition, by Year 2 of this grant the medical home will have secure access to screening and follow-up results via the Internet and/or a telephone Voice Interactive Response System. ... community and the many providers of service. Using a family-to-family model, the center plans to focus on critical transition points for special needs children and their families. The center would also act as an information resource to health care insurers, providers, school systems and purchasers. OMCH would link its Healthline to the Resource Center and the facility would have an information system to capture data on clients/users, provide Internet access to people without computers, and support a list server and Web site for children with special health care needs. A Special Needs Advisory Board is in the process of being formed. There is a parent support group, known as Family Voices, for families of Special Needs children and a full-time parent advocate will soon be joining the OMCH staff.
The Department of Health has other community outreach resources and activities. A new DOH Mobile Health Unit van will have the capacity to provide curbside hearing screening and lead screening to District children under 6 years of age. Funded with a CDC contract, this project will operate from the DOH Environmental Health, Bureau of Hazardous Material and Toxin Substances, Poisoning and Prevention Division. It will provide an excellent opportunity for community outreach and education. Also, within the DOH, the Preventive Health Services Administration, Bureau of Injury and Disability Prevention coordinates a program for children birth - 8 years who have disabilities or are at-risk for developmental delays. They provide developmental screening, home visiting nurses, nutrition counseling and case management for families who request their services. As part of the referral network, they use the Title V audiology services at Hunt Place Clinic. D. C. HEARS would coordinate with this program by providing training for the visiting home nurses in the early detection and follow-up of infants who are deaf or hard of hearing.
3.3 ADMINISTRATIVE STRUCTURE: As a member of the Mayor's cabinet, Ivan C. A. Walks, M.D. is the Director of the Department of Health and the Chief Health Officer of the District of Columbia. Dr. Walks supports the Mayor's Safe Passages mission which is designed to insure that the Mayor's five critical goals for children are achieved: All children are ready to learn upon entering school; all children are succeeding in school; all children...
As the Title V lead agency, OMCH is responsible for the development, coordination and implementation of a system of comprehensive health service for all women, children and youth, including children with special health care needs (CSHCN). As such; it has the experience and capacity to further support the planning, implementation and evaluation of D .C. HEARS. For example, as part of the State Systems Development Initiative (SSDI) grant, a Special Needs database was developed to identify special needs children through data linkages with other government administrative systems. Beginning January 1, 2001, this Special Needs database will be populated by the Newborn Metabolic Screening Program, creating an on-going child registry. (It is from the Newborn Metabolic Screening Program that the medical home is usually identified or confirmed.) The fiscal request for this EHDI grant includes the installation of a commercial off-the-shelf identification and tracking system for EHDI known as OZ SYSTEMS SIMS (OZ). Well recognized in the field, OZ will already be in place in two D.C. birthing hospitals and the Children's National Medical Center (CNMC,) and is used by programs in other states. Hearing screening data collected at each local facility will be electronically transferred to DOH and encrypted to secure confidentiality. The data will be merged in a unified District database within DOH. From the OZ centralized database relevant data will be transferred to the Special Needs database. It is here that the linkage of metabolic and hearing screening information will occur, as well as other disability, development and delay data to provide planners with a better understanding of the requirements of special needs children. It will allow program coordination both within and outside of DOH. Of particular importance to D. C. HEARS is the participation of the DC Early Intervention - Part C program in this effort. (See Appendix 2, Data Flow Chart). The Special Needs database design will permit identification of secondary conditions through the analysis of data at either the child, household, neighborhood or ward level.
In addition, the Community Services Unit of OMCH provides outreach resources. These include a Healthline (1-800-MOM-BABY), transportation services, the Use Your Power! Parent's Council and visiting home nurses (D.C. Healthy Start). In the future, a proposal by the Special Needs Unit for a Title V-funded community-based program to establish a special needs information center will coordinate the resources, expertise and experience of DOH, the special needs develop into productive adults; all children are healthy; and all children are safe. The Mayor's Office supported a recently introduced legislative initiative for newborn hearing screening, included in the "Child and Youth, Safety and Health Omnibus Amendment Act of 2000." Dr. Walks' goal is to establish the premier health care system in the nation, in the nation's capital. D.C. HEARS will contribute to that goal.
Within the Department of Health, the Office of Maternal and Child Health (OMCH) is one of four programs under the Deputy Director of Public Health Services. (See Appendix 3, for organizational structure of DOH). There are four units within OMCH: 1.) The Data Policy Planning and Evaluation Center houses epidemiology, systems development, information management, infant mortality and the -Healthy Start local evaluation. It provides surveillance for pregnancy risk and nutrition, obstetrics monitoring, infant child and maternal mortality and the special needs tracking unit described above. 2.) The Family Services Unit is comprised of Healthy Start I and II. 3.) The Community Services Unit houses Healthline, transportation, Home Visiting, Parent Council, Men's and Women's Health Initiatives, abstinence education, liaison to school health and public information. 4.) The Special Needs Services Unit includes Sudden Infant Death Syndrome (SIDS), Genetic Services and Newborn Screening. It will be the site of D.C. HEARS.
As already noted, the EHDI Coordinator will be aided by an administrative assistant with funding for these two positions requested in this grant. Communication will be maintained with the Title V audiologists located at the DC Public Benefits Corporation (PBC) as well as with the individual responsible for the single point of entry to the Department of Human Services, Early Intervention Program-Part C. In addition, the proposed Newborn Heating Screening, Intervention and Tracking Advisory Board will advise the EHDI program. (Appendix 4) It will consist of at least eleven members, including, but(not limited to: health professionals knowledgeable in hearing loss diagnosis and treatment; consumers affected by hearing loss; parents and teachers of children who are deaf or hard of hearing; representatives of consumer related organizations; and, government representatives of the Department of Insurance and Securities Regulation, Department of Health, and the Department of Human Services, Early Intervention Program. Sub-committees of this Board may include: Screening, Follow-up, Diagnosis, Intervention, Community Outreach and Data Management. Both the Special Needs Advisory Board and the soon-to-be-hired parent advocate are expected to contribute to the EHDI program.
3.4 AVAILABLE RESOURCES: The intent of D.C. HEARS is to identify resources in the District of Columbia to support and supplement the goals and objectives of this grant request. In addition, those resources currently available and taking part in the development of the EHDI program will be encouraged to maintain and augment their current participation.
3.4.1 Organizations: The District of Columbia is the site for a number of national organizations which play a leadership role in the area of newborn hearing screening and intervention. For example, the Alexander Graham Bell Association for the Deaf and Hard of Hearing, the American Speech Language and Hearing Association (ASHA) (in Rockville, Md.), and Galluadet University are supportive of and have contributed to the development of this grant. Rockville, Md. is also the site of Self Help for the Hard of Hearing (SHHH) and the National Institute on Deafness and Other Communication Disorders of the National Institutes of Health. The national headquarters of The American Academy of Audiology and the Academy of Otolaryngology and Head and Neck Surgery are close by in Virginia. In fact, the Joint Committee on Infant Hearing Year 2000 Position Statement was written by many individuals who live or practice nearby, in the District or surrounding area. Locally, the Mayor's Advisory Committee on Metabolic Disorders and the Newborn and Fetus Committee of the American Academy of Pediatrics, District of Columbia, work with the OMCH Newborn Metabolic Screening Program and will extend that collaboration to the EHDI initiative. Other sources of support and expertise are: The D.C. Speech, Language and Hearing Association; the D.C. Metro Area Otolaryngology, Head and Neck Surgery Society; and, the D.C. chapter of the American Academy of Pediatrics.
3.4.2. Hospitals: The participation of the District of Columbia birthing hospitals and the Children's National Medical Center (CNMC) in the preparation of this grant is evidence of the depth and breadth of the commitment of the hospital community to EHDI. All birthing hospitals are currently performing newborn hearing screening; four programs are universal; five are high risk or NICU only, with three planning universal screening in the near future. Therefore, most of the screening equipment needs are met, but, in seven of the hospitals, a data reporting and tracking system compatible to the one proposed for DOH is lacking, and that is requested in this grant. Other resources include, one month rescreening capability at five hospitals and pediatric diagnostic services at three institutions. In addition, through the Title V Maternal and Child Health Block Grant/ Health Services for Children with Special Needs, the Title V CSHCN audiologists at the Public Benefits Corporation (PBC) D.C. General Hospital are supplemented by another Title V audiologist at the Hunt Place Community Health Center. Furthermore, the Children's National Medical Center, Children's Hearing and Speech Center, has been a leader in universal newborn hearing screening throughout Maryland and the District. While CNMC does not have a birthing facility, it receives high risk babies. It has founded and guided the newborn hearing screening program at ten Maryland hospitals and is mentoring a District hospital in the development of its universal hearing screening program. CNMC staffs rescreen and diagnostic sites at the hospital's Children's Hearing and Speech Center and at four regional centers. Another hospital, Georgetown University Hospital has a unique program of providing an audiologist and hearing screening equipment (OAE and a portable audiometer) for a Health Van that travels within the District.
3.4.3. Diagnostic Pediatric Audiologists: There are 39 audiologists certified by ASHA who live or practice in the District of Columbia. Fourteen (14) report that they serve children 0-5 years of age. They may all be located at the hospital centers described above, or some may be in schools or private practice. It is not known how many of these pediatric audiologists provide amplification to infants nor what type of equipment is available to them for diagnosis and management. This important resource needs to be explored further; therefore, an "Assessment and Amplification" survey from the Colorado State program will be distributed to all audiologists living and/or practicing in the District of Columbia or surrounding areas. Results of this survey will be published in the Resource Guide, to be developed as part of this grant, that is intended for hospitals, the medical home and community sites. 3.4.4. Genetics Services: Counseling and testing for hereditary deafness is conducted by genetics centers at The Children's National Medical Center and Georgetown University Hospital, which have the capability to collect blood samples for DNA analysis for the presence of the Connexin-26 (Cx26) mutation. In addition, Gallaudet University provides genetic counseling and offering testing in cooperation with a research project at the Medical College of Virginia. The medical home refers for genetics services.
3.4.5. Early Intervention: Early intervention for infants and toddlers who are deaf and hard of hearing is provided by a range of private and public agencies reflecting differing approaches to meeting the needs of this population:
Department of Human Services: D. C. Early Intervention Program-Part C (DC EIP): Currently, of the 249 children ages 0-3 who are enrolled in EIP, thirteen (13) receive audiology services and three (3) are fitted with hearing aids. The number of children served by Medicaid managed care providers is not included in this count and probably raises the number of children served dramatically. Infants and toddlers who may be eligible for Part C services are identified through outreach, screening and referral conducted throughout the city by a network of agencies and hospitals under the direction of DC EIP. Known as Child Find, it includes: Child Find Phone Line, a 24 hour voice mail for families; Project Rose, comprised of six (6) birthing hospitals and one (1) pediatric hospital to serve as entry points; Community Contractors (Georgetown University Child Development Center and St. John's Community Services) to assist with capacity building; and, City-wide screening fairs. Both English and Spanish are available to access D.C. EIP. Following ascertainment of eligibility, an individual family service plan (IFSP) is developed and families are offered intervention options. For deaf and hard of hearing children, that may include D.C. EIP (although home visits are not currently offered) or one of the public or private schools listed below. A staff person is assigned to oversee transition services from early intervention to the next appropriate placement when the child is 2 years 8 months.
D.C. Public Schools: Toddlers may enter the D.C. Public Schools, where 192 deaf and hard of hearing children ages 3-19 are served in two self-contained and numerous inclusion classrooms. Seventy-two (72) more are in a Level V placement at Gallaudet University. The foundation for a cooperative effort between DOH and the public schools was established last year when the OMCH School Health Liaison worked closely with the Director of the Community and School Health Program of the PBC to obtain funding from the Department of Human Services, Office of Early Childhood Development for the purchase of much needed audiometric screening equipment.
Gallaudet University, Laurent Clerc National Deaf Education Center, Kendall Demonstration Elementary School, Early Childhood Education Programs: Parent-Infant programs are available as soon as hearing loss is identified. Home based programs are available during flexible hours and developed to include extended family members and outside care givers as desired. School based services consist of family-child play groups that provide a warm environment where families learn through interacting with their own child, other children, deaf role models and a variety of professionals. Students with cochlear implants are educated throughout the early intervention programs. In addition, the Child Development Center provides child care from age 19 months through kindergarten for children of Gallaudet University employees, Kendall students who need before and after school options, and other children in need of a child care experience that provides bilingual communication in spoken language and American Sign Language. Currently, there are five (5) District children enrolled in the 0-3 year program and fifteen (15) District children in the 3-5 year old program.
The River School: This independent not-for-profit day school serves children from birth to eight years of age. For infants, there is a two-morning per week facilitated playgroup with parents and infants participating together. For children aged three and older, there is an oral deaf inclusion program of small classes for children, with and without hearing loss, who are taught by a transdisciplinary team. Associated with the Johns Hopkins University Cochlear Implant program, there is specific expertise in working with children who use cochlear implants. Currently, D.C. EIP funds two (2) District children at the River School.
Camelot School, Fairfax, Va.: Prior to the opening of the River School, D.C. residents who wished to provide auditory/oral education for their children who were deaf or hard of hearing chose to have their children attend the Camelot School in Fairfax, Va., a Level V facility of the Fairfax, Virginia public schools. It is not known how many D.C. residents currently utilize this option.
3.4.6. Community Outreach:
Mayor's Initiative: The nine D.C. birthing hospitals and five Medicaid health maintenance organizations are participating in the Mayor's initiative to offer home visits by city nurses to all newborns and their families. Each birthing mother will be approached while in the hospital and given a gift basket of items related to infant health. It will also include a letter from Mayor Anthony A. Williams inviting her to schedule a home visit. The EHDI program hopes to participate in this initiative by obtaining grant monies for an item to be included in the basket. This is in addition to a pamphlet to be provided to all new mothers describing language, speech and hearing milestones and the D.C. HEARS program. The results of the hospital-based hearing screening will be matched to the requests for home visits and the visiting nurses will be asked to assist with follow-up. Training will be provided to the visiting nurses to implement this aspect of the program.
Office of Maternal and Child Health: Other OMCH programs previously mentioned will be accessed. These include a Healthline, transportation, home visiting, and the parents' council, as well as the newly acquired DOH Mobile Health Van which will travel the District, providing both outreach and hearing screening opportunities. Furthermore, staff is available for translation services for the culturally diverse District of Columbia community. Funding is requested through this grant to obtain translations through current DOH resources for parent information pamphlets in Spanish, Korean and versions appropriate for Asian and Pacific Islanders. Another avenue for professional and community outreach will be the links provided to the existing DOH website.
Other: D.C. HEARS will attempt to tap into already existing efforts to publicize newborn hearing screening, i.e., the A. G. Bell Association recently launched an effective poster campaign in public transportation; The American Speech Language and Hearing Association is putting the finishing touches on a video. Other regional and national campaigns will be evaluated to determine if they can be adapted.
3.4.7. Family-to-family support: A major thrust of D.C. HEARS will be to facilitate family-to-family support for caregivers of infants who are newly identified as deaf or hard of hearing. Part of the training of the D.C. EIP coordinator will be devoted to this area, since this support is not currently available in the D.C. EIP program. The proposed DOH Special Needs Information Resource Center will be important for family-to-family support, as will the Special Needs Advisory Board, Family Voices and the special needs parent advocate. DOH also offers Use Your Power! for families receiving medical assistance. In addition, family education and support groups are available at the Laurent Clerc National Deaf Education Center, including: the Kendall Home and School Organization; Parents As Partners; and, Parent-Infant and Toddler Programs monthly meetings. Based on the needs of enrolled families, efforts have been made to bring together families of similar cultural backgrounds. Last year a support group for Latino families was available, but is not currently meeting at this time. Less extensive but similar family-to-family support is available at the River School. The Alexander Graham Bell Association for the Deaf has a national parent support group which meets periodically throughout the country.
3.4.8. Financial: Financial resources of the District are constrained by its unique status among American cities in the multiple role it plays as the nation's capital, a state, and a city. Of the 63 square mile land area, 57 % of the land base is tax-exempt, owned mainly by the Federal government, and 41 % of the assessed property value is exempt from property taxes. The District's fiscal and legislative authority is subject to that of Congress. Therefore, financial resources for deaf and hard of hearing children are also constrained. OMCH will reimburse birthing institutions for the cost of newborn hearing screening at an estimated $35 per uninsured infant (12.6% of newborns) under the Title V Block Grant. Medicaid recipients comprise another 45% of D.C. resident births. D.C. Medicaid or Part C of IDEA cover diagnostic evaluation, treatment and intervention services (including amplification). There will be an MOU between OMCH and Medical Assistance to assure that managed care organizations supply amplification in a timely manner. The D.C. Child Health Insurance Program (CHIPS) has been extended to all uninsured children under age 19 with family incomes up to 200% FPL. Early Periodic Screening Diagnosis and Treatment (EPSDT) mandates early and periodic screening. Families not eligible for funding will access private insurers or will be self-pay, however, the thousands of dollars sometimes necessary for amplification is often a grave hardship. The uninsured often delay seeking services or intervention, especially amplification. A Hearing Aid Loaner Bank is requested in this grant to allow infants who do not have timely access to amplification to use appropriate loaner hearing aids until personal amplification can be obtained. For those unable to access public or personal funds, a private foundation administered by the CNMC Children's Hearing and Speech Center will be available to obtain personal amplification in a timely manner.
3.5 TARGET POPULATION AND SERVICE AVAILABILITY: The target population for this grant is the almost 16,000 babies born annually in the District of Columbia. All are to receive newborn hearing screening in the birthing institution with the results of all screens sent to the DOH; however, the results of only half of these screens will remain in the District of Columbia. The screening results of the 7,000 babies who are Maryland residents will be electronically transmitted to the Newborn Hearing Screening Program of that state (via one of the computer collectors requested in this grant), as will the results of the 1,000 babies who are Virginia residents. Of the 8,000 babies remaining to be followed by the District of Columbia DOH, 4-7 % (320-560) will be referred for a one month rescreen following hospital discharge. Approximately 20 % (64-112) of these babies will require diagnostic pediatric audiology services, with 80% of these identified as deaf or hard of hearing (best practices=51). Data from the Children's National Medical Center indicates that half of these (26) will require bilateral amplification and early intervention services. The remainder of children will require audiologic monitoring and medical management, as will those high risk infants who passed the newborn nursery screen but require 3-6 month follow-up.
The availability of screening, follow-up, diagnostic and intervention services is determined by a multiplicity of factors. Among these are quantity, quality and location of services, accessibility of transportation, knowledge of and cultural belief in the program, compliance with suggested practices, and perceived financial barriers. Therefore, the "availability" of the EHDI program will be as variable as the social, economic and health status indicators of the D.C. population. For example, among the eight wards into which the District is divided, median household income ranges from $26,300 in Ward 8 to $64,800 in Ward 3. And although D.C. is a predominately African American city (In 1998, 61.7 % African American, 34.9 % Caucasian and 3 % Asian American), racial/ethnic composition varies from 4.9 % non-Hispanic African Americans in Ward 3 to 96.3 % non-Hispanic African American in Ward 7. More than 40 % of the Latino population is concentrated in Ward 1 where it represents 25.5 % of the population there. (The Latino population is represented in both the African American and Caucasian percentages noted above.) Approximately 10% of the D.C. population is of immigrant status. The Census Bureau estimates that 22% of D.C. residents live below the poverty level, with children affected disproportionately. ( 35 % underage five; 36 % ages 5 -17) An average of 57.3% of D. C. residents aged 19 and under live at or below the 200% Federal poverty level of 1995- 1997. Since there is currently no system in place to track the babies who are referred by the various newborn hearing screening programs in the District hospital, there is no way to determine what the specific barriers of care are to District residents. The intent of D.C. HEARS is to provide multi-cultural services that will be accessible across all barriers to availability. This will be achieved by using the existing programs noted above and creating culturallysensitive professional and community awareness. 3.6 NEEDS ASSESSMENT: The needs assessment for D.C. HEARS was completed by preliminary surveys, examination of current District literature, and interaction with professionals in the District of Columbia who practice in the areas of newborn hearing screening, pediatric audiology, early intervention, genetics and the medical home concept. The following needs were identified:3.6.1. Infrastructure for EHDI at D.C. DOH:
In addition, collaboration is expected with the D.C. branches of the American Academy of Pediatrics, the American Speech Language and Hearing Association, and the Academy of Otolaryngology, Head and Neck Surgery. The national AG Bell Association for the Deaf will also provide information and expertise.
Of primary importance for coordination is the establishment of the Newborn Hearing Screening, Tracking and Intervention Advisory Board. This will ensure that formal collaborative relationships are established and maintained between the EHDI program and birthing hospitals, the medical home, pediatric diagnostic audiologists, early interventionists and other service providers to determine policies and protocols for screening, follow-up, assessment, amplification, early intervention and the necessary referral and transition process among services. Collaboration and coordination with also be maintained with the Mayor's initiative and other governmental agencies not listed above, including the Department of Insurance and Securities Regulation.
3.8 GOALS AND OBJECTIVES: The goals and objectives of the District of Columbia EHDI program are designed to reach for the benchmarks established by the Joint Committee on Infant Hearing Position Statement 2000. Evaluation is achieved by measuring process and objective outcomes.
| A. OBJECTIVE: ESTABLISH DISTRICT-WIDE INFRASTRUCTURE FOR EHDI | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | ASSIGNED STAFF BY TITLE |
| 1. Establish Newborn Hearing Screening, Tracking and Intervention Board ("Board") | 4/1/01 | 5/1/00 | 1. Appoint
2. Convene 3. Develop Mission Statement |
Director, DOH; Chief, Special Needs Unit |
| 2. Identify and convene working sub-committees of Board | 5/1/01 | ongoing | a. Scope of Work developed
b. Committee minutes c. Committee products |
Chief, Special Needs Unit; Genetics Coordinator |
| 3. Hire D.C. HEARS coordinator and administrative assistant (A.A.) | 4/1/01 | 5/15/01 | Coordinator and assistant in place | Chief, Special Needs Unit |
| 4. Facilitate electronic transfer of data from birthing hospitals to DOH | 5/15/01 | 7/1/01 | a. Data management system purchased and installed in each hospital compatible with data management at DOH
b. Hearing screening staff receive training |
Computer Specialist, D.C. HEARS Coordinator |
| 5. Integrate EHDI data with metabolic data system thru linkage with DOH-OMCH Special Needs database | 7/1/01 | ongoing | Compare babies receiving hearing screening to babies receiving metabolic screen | Computer Specialist, Genetics Coordinator, D.C. HEARS Coordinator |
| 6. Transfer hearing screening results of babies born in the District but residing in Md., Va. and other states to the state of residence within one week of receipt of results | 7/1/01 | ongoing | Compare number of D.C. births of out of state residents to number of data sets transferred | Computer Specialist, D.C. HEARS Coordinator |
| 7. Notify medical home via secure mail, fax, e-mail of babies who were not screened or referred
a. Following hospital screen b. Following one month rescreen c. Following diagnostic testing |
7/1/01 | ongoing | a. Number of not tested or referred babies identified with medical homes
b. Number of notices between DOH and medical home |
D.C. HEARS Coordinator and A.A. |
| 8. Notify parent/guardian via secure mail, fax, e-mail and *Home Visits of babies who were not screened or referred
a. Following hospital screen b. Following one month rescreen |
7/1/01 | ongoing | a. Number of not tested or referred babies identified
b. Number of contacts between DOH and caregiver |
D.C. HEARS Coordinator and A.A. |
| 9. Establish case resolution guidelines | 6/1/01 | 7/1/01 | Written case resolution guideline | Genetics Coordinator, D.C. HEARS Coordinator |
| 10. Implement case resolution guidelines | 7/1/01 | ongoing | Number of cases resolved/total number of babies screened | D.C. HEARS Coordinator; Computer Specialist |
| 11. Integrate EHDI program into Mayor's *Visiting Home Nurse initiative
a. Develop pamphlet/ basket insert b. Train nurses re: EHDI c. Notify nurses of babies not screened or need follow-up |
8/1/01 | ongoing | a. Pamphlet and insert developed
b. Number who return for follow-up after home nursing visit/Number of babies notified |
D.C. HEARS Coordinator |
| 12. Integrate D.C. HEARS into existing DOH programs
a. Healthline (Wards 1-4) b. DC Healthy Start-(Wards 5-8) c. CSHCN Advisory Board, Resource Center, parent advocate d. Transportation e. Translation f. DOH Mobile Health Van g. D.C. Linkage and Tracking-Birth to Eight |
9/1/01 | ongoing | a. Number of training sessions/ people trained
b. Number of calls re: D.C. HEARS on Healthline c. Number of home visits d. Number of parents accessing transportation for screening and follow-up visits e. Number of languages represented in D.C. HEARS pamphlets f. Number of hearing screenings on Health Van |
Chief, Community Services Unit: Chief, Family
Services Unit; D.C. HEARS Coordinator |
| 13. Integrate EHDI data into Special Needs database and analyze | 10/1/01 | ongoing | Match EHDI variables to variables available in Special Needs database | Computer Specialist; D.C. HEARS Coordinator |
| B. OBJECTIVE: ESTABLISH STANDARDS FOR UNIVERSAL NEWBORN HEARING SCREENING IN DISTRICT BIRTHING INSTITUTIONS | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY TITLE |
| 1. Survey birthing institutions using Hospital survey from the state of Colorado | 5/15/01 | 6/1/01 | Analyze and publish survey | Board Hospital subcommittee; |
| 2. Implement uniform informed consent in all birthing institutions | 5/1/01 | 7/1/01 | a. Literature and consent completed, reviewed and approved by Board for distribution
b. Literature and consent form printed |
Board Hospital subcommittee; Genetics coordinator; parent advocate |
| 3. Develop universal newborn hearing screening model protocol | 5/1/01 | 7/15/01 | Model completed, reviewed
and approved by Board and DOH |
Board Hospital subcommittee; D.C.
HEARS coordinator |
| 4. Review literature, especially Utah's National Center of Hearing Assessment and Management, to develop quality indicators to assess model outcomes
a. Personnel b. Equipment c. Pass/refer d. High risk indicators e. Data management f. Referrals/Follow-up |
5/1/01 | 8/ 1/01 | a. Standards reviewed and approved by Board
b. Standards printed |
Board Hospital subcommittee; D.C.
HEARS coordinator |
| 5. Visit birthing institutions to disseminate model and targets | 8/1/01 | 11/1/01 | a. Number of birthing sites visited/ number of visits
b. Number personnel exposed |
Board; D.C. HEARS coordinator |
| 6. Develop core-competencies and review of competencies for program components
a. Personnel b. Equipment c. Pass/refer criteria d. Notification: script for parents; letter for medical home; data to DOH e. Data management and tracking f. Referrals/Follow-up: available sites |
8/1/01 | 11/1/01 | a. Standards reviewed and approved by Board
b. Standards printed |
Board Hospital subcommittee; D.C.
HEARS coordinator |
| 7. Visit birthing institutions to disseminate screening guidelines to screening sites | 11/1/01 | 2/1/02 | a. Number of birthing sites visited/ number of visits
b. Number personnel exposed |
D.C. HEARS coordinator |
| 8. Track quality indicators | 3/1/02 | 5/1/02 then bi-monthly | Evaluate quality indicators for each site | Computer Specialist D.C. HEARS coordinator |
| 9. Collect data and publish annual report | 5/1/02 | 9/1/02;
then yearly |
Compare District universal newborn hearing screening data to JCIH EHDI targets: a. 95% of live births receive non-invasive physiologic hearing screening (compare to metabolic screening data) b. Parents, medical home, DOH notified
c. 4% of babies initially screened referred for rescreen d. 75% of refers receive one-month rescreen e. 75 % of one month rescreen refers receive diagnostic audiology |
Board;
Computer Specialist Genetics eoordina- tor; D. C. HEARS coordina- for |
| 10. Educate hospital personnel and families of newborns re: EHDI
a. Provide continuing medical education for administrators, physicians, nurses, audiologists and technicians b. Provide culturally sensitive educational materials at appropriate literacy levels for families of newborns, including literature, videos and website access |
7/1/02 | ongoing | a. Survey hospital personnel following presentations
b. Telephone survey to families selected randomly c. Monitor website use |
Board; D.C. HEARS coordinator |
GOAL II: ESTABLISH A PARTNERSHIP BETWEEN D.C. HEARS AND THE MEDICAL HOME
| A. OBJECTIVE: LINK MEDICAL HONE TO BIRTHING INSTITUTIONS, DOH AND DC EIP | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY TITLE |
| 1. Develop uniform letter of notification from hearing screening sites to medical home (Goal I, Objective B., Activity 6) | ||||
| 2. If unknown, identify medical home of all babies who do not pass hearing screen or were missed at birthing institution (Goal I, Objective A., Activity 5) | ||||
| 3. Alert medical home of all babies who do not pass hearing screen or were missed at birthing institution, after follow-up or diagnostic evaluation (Goal L, Objective A, Activity 7) | ||||
| 4. In collaboration with the D.C. chapter of the AAP, generate mass mailing to announce D.C. HEARS; facilitate access to training and technical assistance to provide the medical home with understanding of importance of and guidelines for screening, follow-up and diagnostic referrals, medical specialist referrals and sites for these | 4/1/02 | 7/1/02 | a. Publish hard copy and web site guidelines
b. Survey medical homes re: satisfaction with guidelines c. Survey medical homes re: number of referrals for follow-up screening; diagnostic audiology and medical specialists |
ComputerSpecialist; Genetics Coordinator, D.C. HEARS coordinator; A.A |
| 5. In collaboration with the D.C. branch of the AAP, facilitate access to training and technical assistance to provide the medical home with information and technical assistance re: children diagnosed as deaf and hard of hearing including communication and early intervention options; provide guidelines to access single point of entry; provide list of family-to-family support resources | 8/1/02 | 2/1/03 | a. Publish hard copy and web site information
b. Survey medical homes re: number of referrals for early intervention and family-to-family support |
ComputerSpecialist; Genetics Coordinator, D.C. HEARS coordinator; A.A |
| 6. Establish secure voice entry to EHDI database | 7/1/02 | ongoing | Number of instances voice access is used | Computer Specialist, A.A. |
| 7. Develop uniform reporting to medical home by follow-up screeners, diagnostic audiologists and early interventionists | 4/1/03 | 7/1/03 | Number of uniform referrals received vs. all referrals | Board; D.C. HEARS coordinator; Genetics Coordinator |
GOAL III: ALL BABIES REFERRED WILL RECEIVE DIAGNOSTIC PEDIATRIC AUDIOLOGIC EVALUATION BY THREE (3) MONTHS OF AGE
| A. OBJECTIVE: IDENTIFY PEDIATRICAUDIOLOGY SERVICES | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY
TITLE |
| 1. Survey District area audiologists using "Assessment and Amplification" form from Colorado program | 7/1/01 | 10/1/01 | Number of surveys returned vs. number distributed | D.C. HEARS coordinator; A.A. |
| 2. Publish hard copy and web-based list of pediatric audiology sites; diagnostic capabilities; ability to fit amplification; provide list of family-to-family support resources | 10/1/01 | 1/1/02 | Number of hard copies distributed; number of website visits | D.C. HEARS coordinator; A.A. |
| 3. Link medical home, rescreening sites to pediatric diagnostic audiology services | 10/1/01 | ongoing | Number of referrals from medical homes and rescreenings to pediatric diagnostic audiology sites | D.C. HEARS coordinator; A.A. |
| B. OBJECTIVE: ESTABLISH PARTNERSHIP BETWEEN D.C. HEARS AND PEDIATRIC DIAGNOSTIC AUDIOLOGISTS | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY
TITLE |
| 1. Publicize training opportunities in pediatric diagnosis, amplification and counseling | 4/1/02 | ongoing | Number of D.C. audiologists attending training | Board, D.C. HEARS coordinator, A. A. |
| 2. Provide hard copy and web based access to communication and early intervention options for District children who are deaf and hard of hearing; provide guidelines to access single point of entry; provide list of family-to-family support resources | 4/1/02 | 7/1/02 | Number of children who are diagnosed as deaf and hard of hearing who are referred for early intervention within five (5) days of diagnosis | Board, D.C. HEARS coordinator, A.A. |
| 3. Develop uniform "Confirmed Hearing Loss" report format for DOH, medical home, and early intervention program | 4/1/03 | 7/1/03 | Number of children referred with common report vs. other reports | Board, D.C. HEARS coordinator |
| C. OBJECTIVE: PROVIDE ACCESS TO AMPLIFICATION BY SIX (6) MONTHS OF AGE FOR ALL BABIES DIAGNOSED AS DEAF OR HARD OF HEARING | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY
TITLE |
| 1. Counsel parents re: amplification options and options for funding for amplification; notify medical home, DOH and early intervention re: amplification with common reporting form | 7/1/01 | ongoing | Number of babies fit with amplification by six months of age/ Number of babies whose families request amplification | Pediatric audiologists; D.C. HEARS coordinator |
| 2. Provide loaner hearing aids thru "Bank" until personal amplification obtained | 7/1/01 | ongoing | Number of aids loaned/returned | CNMC |
| 3. Access private foundation if no other means of obtaining personal amplification | 7/1/01 | ongoing | Number of aids issued | CNMC |
| 4. Publish hard copy and web-based list of all public and private insurers who cover amplification for children; update | 7/1/03 | 10/1/03 and ongoing | Number of insurers listed/accessed | Computer Specialist; D.C. HEARS Coordinator |
GOAL IV: ALL BABIES DIAGNOSED AS DEAF AND HARD OF HEARING WILL ENTER AN EARLY INTERVENTION PROGRAM BY SIX (6) MONTHS OF AGE
| A. OBJECTIVE: IDENTIFY AND REPORT ALL COMMUNICATION AND EARLY INTERVENTION OPTIONS AVAILABLE TO DISTRICT CHILDREN WHO ARE DEAF OR HARD OF HEARING | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY
TITLE |
| 1. Survey all early intervention programs for children who are deaf and hard of hearing using the state of Colorado "Early Intervention Survey" | 1 /1/02 | 4/ 1/02 | Number of surveys returned | D. C. HEARS
coordinator; DC EIP; A.A |
| 2. Publish unbiased culturally sensitive hard copy and web-based survey findings | 4/1/02 | 7/1/02 | Number of copies distributed to:
a. Medical Homes b. Diagnostic audiologists c. Community sites d. Individual families |
Board; D.C. HEARS coordinator; DC EIP |
| B. BABIES WHO ARE DIAGNOSED AS DEAF AND HARD OF HEARING WILL BE REFERRED TO EARLY INTERVENTION WITHIN FIVE (5) DAYS OF IDENTIFICATION | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY TITLE |
| 1. Develop and distribute common consent and referral procedures for medical homes, DOH and diagnostic audiologists to refer to single point of entry | 8/1/01 | 9/1/01 | 1. Number of families who consent to early intervention referral
2. Number of babies referred within 5 days |
Board; D.C. HEARS coordinator; DC EIP |
| 2. Identify and train early intervention service coordinator to support families as they transition from identification to intervention | 6/1/01 | 9/1/01 | a. Single point of entry to early intervention identified
b. Consultants train and provide technical assistance c. Families documented as receiving published information re: communication and intervention options |
D.C. EIP; PBC; D.C. HEARS coordinator |
| 3. Update "Options" guide annually | 9/1/01 | 9/1/02; 9/1/03; 9/1/04 | Availability of hard copy and web-based "Options" guide | Board; D. C. HEARS coordinator; DC EIP;
parent advocate |
| 4. Notify medical home, DOH and diagnostic audiologist of family's entry into early intervention process | 9/1/01 | ongoing | Number of referrals entering DC EIP program/ Number of referrals made by medical home, DOH and audiologists | D.C. HEARS coordinator; A.A.; Computer Specialist |
| C. OBJECTIVE: FACILITATE ENTRY INTO D.C. EARLY INTERVENTION PROGRAM | ||||
| ACTIVITIES | START DATE | END DATE | MONITORING AND EVALUATION METHODOLOGY | STAFF BY TITLE |
| 1. Complete IFSP within 45 days for all babies diagnosed as deaf and hard of hearing who utilize DC EIP | 7/1/01 | ongoing | Number of babies with completed IFSP's/ Number of babies entering DC EIP | DC EIP |
| 2. Identify and publish all family-to-family support services; refer families
a. OMCH b. Public education c. Private education d. Other organizations |
7/1/02 | 9/1/02 with annual updates | Number of families who report participation in family-to-family support groups or informal support/ Number of families referred | OMCH parent advocate, D.C., HEARS coordinator; DC EIP |
| 3. Notify medical home, diagnostic audiologist and DOH of entry into early education program | 7/1/01 | ongoing | Number of notifications documented | DC EIP |
| 4. Develop guidelines for early intervention services for deaf and hard of hearing children | 6/1/03 | 9/2/03 | Publish guidelines | Board; D.C. HEARS; DC EIP |
| 5. Seek funding to evaluate guidelines and monitor individual success of programs utilizing guidelines | 9/1/04 | 3/1/05 | 1. Funding granted
2. Parent satisfaction survey 3. Monitor progress of each child 4. Analyze data |
DC EIP; Chief, Special Needs Unit; D.C.
HEARS coordinator |
3.9 REQUIRED RESOURCES: The grant monies requested by this application will provide the resources to implement a coordinated and collaborative newborn hearing screening and intervention program in the District of Columbia. Support is requested for:
3.9.1. Personnel: An audiologist will be hired as coordinator of D.C. HEARS. This professional is uniquely qualified to monitor the infant's journey through the intricacies of screening, follow-up, diagnosis, amplification and early intervention, as an audiologist has expertise in all components of the EHDI process. The audiologist will participate in professional training and parent counseling, to the extent required at the state level. The audiologist will contribute to and review the work products of the Board, as well as facilitating access to interagency cooperation and collaboration. An administrative assistant is requested to provide support to the D. C. HEARS program, including, but not limited to Board administration, case resolution and preparation of resource manuals, both hard copy and web-based. The Genetics Coordinator, Computer Specialist and Supervisory Public Health Analyst, Chief Special Needs Unit will contribute to the effort, but funding is not requested for these.
3.9.2. Operating expenses: These expenses enable the program to build the infrastructure required to develop a comprehensive EHDI program. Of utmost importance is the cost of providing electronic linkage from the birthing hospitals to DOH. Listed as Equipment, these commercial, off-the-shelf Collection Stations will enable each hospital to record demographic and screening data on each infant and then electronically transfer that information to the Reader Station at DOH. (Reader stations are also requested for D.C. Early Intervention Program and the state of Maryland.) Technical support for these stations for a three year period is also requested in the grant. The reader station at DOH will interface with the Special Needs Database, which has already been funded under SSDI, and will allow coordination with the newborn metabolic screening database, as well as other sources. The request for funding for Web-based applications is related to the need to connect the medical home to the EHDI database at DOH. In addition, printing and educational materials are required to facilitate community outreach to parents and providers. Plans for hard copy and web-based resource guides are ambitious but very necessary. The inclusion of a Hearing Aid Loaner Bank is designed to address the need for timely access to amplification. It will provide amplification for newly diagnosed deaf and hard of hearing infants until personal amplification has been fitted. Finally, funding is requested for travel, so that the D.C. HEARS coordinator will have access to conferences and training programs to update skills and to be introduced to new ideas.
3.10 PROJECT METHODOLOGY: D.C. HEARS will establish an infrastructure of parents, consumers and professionals who will contribute to the collaboration and coordination of the public and private agencies and organizations in the District of Columbia dedicated to the building of a model program for EHDI. This will include a Newborn Hearing Screening, Tracking and Intervention Advisory Board to provide advice and guidelines on the development of a comprehensive, community-based, family centered and culturally competent coordinated system of newborn hearing screening, assessment and early intervention. Executive sub-committees will be populated with the dedicated professionals (and others to be named) who so willingly gave of their time and expertise in the writing of this grant. They will contribute to the development of: protocols and guidelines for informed consent, hearing screening, assessment and amplification and early intervention; professional and community education; data collection and evaluation and building future resources. They will work in concert with the D.C. HEARS coordinator, who will also: centrally collect and analyze data, especially in coordination with the Special Needs database; follow babies to case resolution; provide information to parents and professionals; develop resources; promote comprehensive care within the medical home; and, access family-to-family support for parents and caregivers of deaf and hard of hearing children. The emphasis is on surveying, strengthening and expanding existing programs, particularly those available through Children with Special Health Care Needs, as OMCH is the lead agency for Title V. In addition , the Mayor's Initiative for home visiting of families with newborns will be important for D.C . HEARS. The establishment of a Hearing Aid Loaner Bank is a new initiative and will be housed off-site at CNMC and staffed by a dispensing pediatric audiologist. It was developed in response to the concerns expressed by other dispensing pediatric audiologists who reported difficulty in accessing amplification in a timely manner for infants newly identified as deaf and hard of hearing. A new, private foundation, also housed off-site at CNMC, may also be available for the provision of personal amplification.
Annually, during the grant period, assessment will be made of performance measures (process objectives) and quantitative measures (outcome objectives). Surveys of providers and parents will taken. These measures will be used to indicate the effectiveness of the various components of D.C. HEARS, as well as the effectiveness of the coordination and collaboration of components. Furthermore, the evaluation measures will be used to plan the future course of D.C. HEARS so that it will remain a vibrant component of the District health and education community. It is expected that early intervention competencies, resources for family-to-family support, issues related to auditory neuropathy and cochlear implants and financial needs will be addressed in the time period following this grant. (See attachments E and F.)
3.11 EVALUATION PLAN:
Three evaluation strategies will be employed to determine the efficiency and effectiveness of D.C. HEARS and its impact on the lives of District children who are deaf and hard of hearing. The first will measure process objectives, tracking adherence to the established work plan and evaluation of the deliverables. This will include, but not be limited to: number and quality of responses to baseline surveys; time from initiation of a project to its completion; quality and usefulness of a project as evaluated by its recipients; accuracy of a project; and timeliness of a project.
The second strategy essentially measures the effects of process objectives on health and performance indicators, the outcome objectives of the project. These can be quantitatively analyzed by looking at the benchmarks and quality indicators described by the JCHI:
Screening Bench mark: Birthing institutions will screen a minimum of 95% of infants during admission or before one month of age
Quality Indicators are percentage of infants who: are screened during birth admission and/or before one month of age; did not pass initial screen and who returned for follow-up; are referred for audiologic and medical management; have families that refused hearing screening on birth admission
Identification Benchmark: 100% of infants who are diagnosed as deaf or hard of hearing will receive comprehensive services coordinated between the medical home, family and related professionals crud state and local agencies, including audiologic and medical evaluations before 3 months of age or 3 months after discharge from NICU; otologic evaluation; and, referral to Part C coordinating agencies
Quality indicators are percentage of infants who: have care coordinated between the medical home and related professional; have audiologic and medical evaluations by 3 months of age; are referred to otology; accept services; sign an IFSP by infant's six month birthday
Early Intervention Benchmarks: All infants with hearing loss are: enrolled in a family-centered early intervention program before the infant is 6 months of age with professional personnel who are knowledgeable about the communication needs of infants with hearing loss; using amplification, if no medical contraindications and fancily agrees, within one month of the diagnosis; receiving ongoing audiologic monitoring at three month intervals; achieving language development in family's chosen mode; have families who participate in and express satisfaction with self-advocacy.
Quality indicators are percent of infants with hearing loss who are: enrolled in early intervention before six months of age; enrolled with knowledgeable, professional personnel; receiving language evaluations at 6 month intervals; achieving language levels commensurate with that of their hearing peers; using amplification within one month of diagnosis; in families refusing early intervention services; in families participating in and expressing satisfaction with self-advocacy. In addition, the number of first year follow-up visits for amplification monitoring and adjustment should be counted
Clearly, the some of the benchmarks may be set too high for a nascent newborn hearing screening and intervention program. However, the quality indicators will still be considered and evaluated if possible. The quality indicators that are applicable will be integrated into the OMCH Special Needs database and subject to multivariate analysis.
Finally, provider and parent surveys will enable evaluation of satisfaction with the components of D.C. HEARS and facilitate planning and programming for future needs of District infants who are deaf or hard of hearing.