Project Title: Integrated Services for Children with Special Health Care Needs
Project Number: CFDA # 93.110ZZ
Project Director: Mary Olguin, Ed.D. Phone: (505) 827-2549
Organization Name: New Mexico Department of Health, Public Health Division, Family
Health Bureau, Children's Medical Services
Address: Hear Early Program
1190 St. Francis Drive
Santa Fe, NM 87505
Contact Person: Mary Olguin, Ed.D., Phone (505) 827-2549
Fax: (505) 827-1697
E-mail: MARYO @ DOH.STATE.NM.US
Project Period: 4 years from April 1, 2000 To: March 31, 2004
Current Budget Period: From April 1, 2000 To: March 31, 2001
1.1 Summary
1.1.1 Organizational Setting
New Mexico's Hear Early Program of universal newborn hearing screening and follow up services is administratively located within the Department of Health, Public Health Division, Family Health Bureau, Children's Medical Services Program (CMS). The CMS program is the Title V agency in the state for children with special health care needs. Along with the Commission for the Deaf and Hard of Hearing, the deaf community, early intervention programs including IDEA Part C, STEP HI and La Voz de Ninos, Parents Reaching Out and Family Voices, the CMS program has developed a universal screening program over the last four years.
1.1.2 Purpose
The purpose of the project is to assure that the children of New Mexico receive optimum services related to the early identification of hearing loss including screening before hospital discharge, assessment, diagnosis, participation in a medical home, and placement in appropriate early intervention services. New Mexico will lower it's referral rate before hospital discharge, and increase the number of children receiving services who need them.
1.1.3 Problem
Universal newborn hearing screening before hospital discharge and related follow-up services has allowed the average at which children are identified from 2 Vi year to a few months. Placement in early intervention services by age 6 months has been shown to be the single most important factor in children attaining normal language skills by school age. The resultant increase in school performance should help all of these children meet their maximum potential in all areas of their lives.
In addition, participation in a medical home and family support services will encourage full participation in the program and assure that all needed services are received.
1.1.4 Goals and Objectives
Over the next four years New Mexico plans to lower the referral rate from hospitals from 5% to less than 3%, increase by 50% the number of infants appropriately diagnosed with hearing loss by 3 months of age, and increase by 50% the number of infants appropriately placed in early intervention services. All infants with a diagnosis of hearing loss will be placed in a medical home to assure full access to needed services. All infants will also be referred to parent support services which greatly reduce the amount of anxiety experienced by parents of infants with hearing loss.
1.1.5 Methodology
Implementation of this project will depend on adding the services of a full time Coordinator statewide. This position will work with CMS service coordinators in encouraging families to seek follow up services as needed. A tracking system will be developed to assure that few families "fall through the cracks" in the system, and therefore assure that all infants needing services receive them. A public awareness initiative will help to make Hear Early and universal newborn hearing screening an expectation for families of newborns. Linkage to a medical home will further assure that these infants and children have access to care at all needed levels. Parent support services will be available for all families in this project and will help them make decisions for their infants in ways that work for them.
1.1.6 Evaluation
The results of this project are included in the Title V MCH objectives and are reported annually. In addition, a link to the birth file from Vital Records and Health Statistics will assure that all births in the state receive screening. An outside evaluator will measure attainment of goals and objectives and the program will complete process evaluation each year of the project.
1.1.7 Text of Annotation
This project will facilitate full implementation of New Mexico ' s universal newborn hearing screening program. This will provide a program in which more than 90% of infants in the state are screened for hearing loss before hospital discharge. Three percent or less of infants screened will require re-screening and infants needing diagnostic testing will receive it my 3 months of age. Infants with a diagnosed hearing loss will receive early intervention services by 6 months of age. New Mexico currently has a fully functioning system of screening and referrals, but project will allow for the implementation of a plan of comprehensive, timely follow-up for all infants needing services.
1.1.8 Key Words
Hear Early program for early identification of infants with hearing loss universal newborn hearing screening
PROGRAM NARRATIVE
2.1 Program Description
2.1.1. Purpose of the Program
The purpose of this project is to assure that the children of New Mexico receive optimum services related to the early identification of hearing loss including screening before hospital discharge, assessment, diagnoses, and placement in appropriate early intervention services. These services will be provided in a family centered, community based, culturally competent and coordinated manner.
New Mexico has been screening infants for hearing loss for the last 15 years, but until four years ago, this was limited to a high risk register with referrals from pediatricians if infants met specified criteria. More recently, the Hear Early Program was established which has encouraged hospitals to screen all infants before hospital discharge. Under high risk screening, the average age of identification of hearing loss was 2.5 years nationally. Research has clearly shown that this age is much too late for maximum language development and results in significant delays which are never made up. Research from the University of Colorado, Christie Yoshinaga-ltano and associates have demonstrated that beginning early intervention by 6 months of age results in normal language development by school age.
With births of approximately 27,000-28,000 per year, and an anticipated incidence of rate of 3/1000, New Mexico would expect to identify 80+ children with a significant hearing loss each year. The relatively small population in New Mexico makes it possible to develop a comprehensive program which is administered by the State of New Mexico through the Title V Children With Special Health Care Needs Program-Children's Medical Services (CMS). Unfortunately, the small number of births is reflective of a rural state with distances between families and services to meet their needs.
By redirecting funds as more children became eligible for Medicaid, New Mexico has implemented a program of universal newborn hearing screening through the Title V program. On a voluntary basis, 32 of 33 birthing hospitals are universally screening newborns before discharge representing 95%+ of all births in the state. For the purposes of this proposal, we would identify New Mexico as between criteria #3 (full implementation) and #4 (refinement). The screening portion of the system is operating at over 90% which would be considered as "full implementation" but with a referral rate of 5%. Efforts would be targeted to reach a 1-3% referral rate to meet national recommendations. Assessment and early intervention services are limited in numbers by referrals from initial screening which fail to follow up on recommendations for re-screening-approximately 50% of initial referrals are "drop outs". Protocols for diagnosis have been established and protocols for early intervention are being refined.
This project has specific outcomes as priorities for the next four years. More than 90% of infants will be screened for hearing-loss prior to hospital discharge, 90% of referrals with in-hospital discharge will be re-screened within one month of discharge, 90% of referrals from all screening will receive audiological assessment and diagnostic testing, and 90% of infants diagnosed with significant hearing loss will begin early intervention services. All levels in this process will be provided in a family-centered, community based, culturally competent and coordinated system. Services provided will assure each infant a medical home and coordination among medical, family and service coordinators participants.
2.1.2 Organizational Experience and Capacity
Children's Medical Services (CMS) is the Title V agency for children with special health care needs in New Mexico with more than 60 years of experience in developing programs to meet the needs of identified children. With the availability of screening technology which was both efficient and cost-effective, the CMS program followed the lead of the Department of Health as vision and hearing screening were established as priorities for the Department. In cooperation with the Presbyterian Ear Institute, a non-profit organization dedicated to issues around hearing located in, Albuquerque. Each hospital in the state was approached to begin screening newborns for hearing before discharge.
The percentage o f hospitals participating quickly rose from 25% to 99% and the percent of infants screened from 5% in 1996 to more than 90% in 1998. CMS negotiated agreements with participating hospitals (a copy is attached in Appendix A), in which equipment which was purchased by CMS was used by hospitals for screening. When more than 90% of infants were screened for three consecutive months, ownership was transferred to the participating hospitals. Supplies for all screening have been provided by CMS in lieu of making payments for screening.
More than 70 social worker service coordinators, twelve of which are dedicated to children under three, participate in the Hear Early Program by assisting families in securing needed services under the program. A tracking system has been developed for assuring that all families receive all needed services. New Mexico was the first state to tackle universal hearing screening from the state level-implementing a statewide program in a very little time. Hospitals have participated voluntarily.
New Mexico has also participated in the Marion Downs National Center for Infant Hearing Technical Assistance Project-and developed suggested task forces and coordination activities. We have attended all the training offered by the Program and implemented it in our day-to day activities. We have also presented at national meetings including the American Academy of Audiology to share the role of the Title V program in implementation of universal newborn hearing screening. We are the first state to implement a state-wide system from within the Title V program and to utilize the unique experience of our staff in working with families of identified infants.
Legislation was enacted in the last legislative session (SJM24) in which the legislature requested the New Mexico Department of Health and the New Mexico Commission for the Deaf and Hard of Hearing to conduct a study of the necessity for mandating newborn hearing screening by assessing the current newborn hearing screening practices throughout the state. The Memorial Study was submitted to the Health and Human Services Interim Committee. Representatives from these agencies testified before the Committee answering questions about the need for mandating newborn hearing before hospital discharge. Significant broad based support was demonstrated for mandating newborn hearing screening at the next 60 day session beginning January 2001. The leadership of CMS was recognized by the Committee.
2.1.3 Administration and Organization
The administrative structure of the Department of Health contains the Public Health Division in which the Family Health Bureau and Children's Medical Services are located and the Long Term Services Division in which the IDEA Part C program for children birth to three is located. These two programs along with the Human Services Department, Medical Assistance Division are joined through a Joint Powers Agreement which provides for the Family, Infant Toddler (FIT) program for children birth to three. Under this agreement funds flow to appropriate entities and case management services are provided to Medicaid eligible children birth to three at risk for developmental disabilities. The FIT program is composed of 12 CMS social workers dedicated to serving birth to three children and service coordinators in early intervention programs. The CMS FIT workers are funded through billing third parties and the Part C program provides the remainder of the required funding to CMS.
New Mexico anticipates functioning within any framework of technical assistance offered under this program from the national level. Both the audiologists and speech language organizations offer training and opportunities for sharing of information among states. The Natus company from which screening equipment was purchased also offers information about screening and related topics. During the most recent training provided by the Marion Downs Center, the American Academic of Pediatrics trained participants on the use of Medical Home in newborn hearing screening programs. Relationships with hospitals, audiologists and early intervention agencies are included in section 2.1.7 Collaboration and Coordination.
2.1.4 Available Resources
During the prior fiscal year, CMS has allocated resources to the Hear Early Program including staff time, equipment and supplies for hospitals.
2.1.4.1. Staff Time
The Director provides .25 FTE to oversee the program. CMS social work staff are assigned referrals for follow-up in local communities and integrate this into their regular service coordination activities. The amount of actual time varies among case managers but half of the births occur in the Albuquerque area, and these staff members have more referrals for which to provide assistance. All 12 FIT social workers provide case management services to families of infants identified with a hearing loss. It is expected that they will help these families make decisions about early intervention activities. They are currently designated as interim service coordinators through the IDEA Part C program and may be identified as more permanent service coordinators at the families discretion. A .5 FTE position was provided to help coordinate information among all of the participants in the project but this position is currently vacant and will likely remain vacant without additional funding.
2.1.4.2 Funds
Funds for supplies and educational information have been provided by CMS. Screening supplies are provided to hospital programs for AABR equipment which is approximately $8.00 per infant, and a total of $200,000 per year since two hospitals screen first with OAE equipment and the referrals with AABR. Educational information has 3 main items-a brochure for parents and physicians describing the program, a certificate announcing "I've had my hearing screened" for all mothers of newborns, and "Family Resource Guide" for families of children identified with a hearing loss. Copies of the information for parents are included in Appendix C. In addition, CMS staff have videos for use by families of identified children. Materials have been developed in English and Spanish and the CMS program offers information in any language which families need for maximum understanding and participation.
2.1.4.3 Equipment
Equipment was purchased by CMS for use by hospitals in screening before discharge. Equipment was also loaned to audiologists in areas where screening is not done by the hospital and for use in traveling to remote areas of the state, to minimize travel time by families for re-screening after discharge if it is not done in the local hospital. In particular other sites administered by Native American programs have portable screening units to use when traveling to remote areas and into homes of Native American families needing screening or re-screening. A network of audiologists has screening equipment for use by infants who were home births so assure that all infants are screened. A review with Natus Medical indicated that all equipment currently in use in New Mexico should be able to support screening needs adequately for the next 3-4 years with the warranties which were already purchased. Upgraded color units have been provided to the larger hospitals. This has increased accuracy and consistency in recording infant information but has caused revisions to the database to make adjustments in receiving new information from these hospitals.
2.1.4.4 Contract
There are severe staff position limitations within the Department of Health. Staff available for coordination activities have been reduced and a contract has been completed to assist in automating some program functions as well as fully develop a state-wide database and tracking system ($20,000.00).
2.1.4.5 Summary
All resources which have been made available for this program must compete with other needs of children with special health care needs. It is hoped that legislative action will eventually help the severe financial restrictions requiring creative solutions to the many needs of this population. It is also hoped that utilization of any and all partnerships in the local communities and through medical agencies such as Managed Care Organizations , including Medicaid Managed Care (SALUD) will help to decrease the direct state resources needed to operate the program as it is institutionalized into on-going activities of other agencies.
2.1.5 Identification of Target Population and Service Availability
Infants with hearing loss and their families are the target population for this project. It is anticipated that approximately 80 infants will be identified each year with hearing loss through the Hear Early Program. While the incidence of hearing loss varies from 3 per 1,000 for the general population and 6 per 1,000 for the Newborn Intensive Care Unit graduate population, a target of at least 80 infants has been set for the program. Tracking these infants over time and especially those with auditory neuropathy will provide valuable information for future target populations. Contribution to national information on hearing loss among all children can have this data as a core database and along with information on other cases of hearing loss will help provide a comprehensive picture of these children in New Mexico and the nation. New Mexico's Children's Chronic Care Registry (3CR) includes information on all children with hearing loss. These two programs can work together for a comprehensive view of this problem..
2.1.5.1 Special problems in identification of infants
Some of the barriers and special problems in full implementation of a comprehensive system of newborn hearing screening include:
A. Difficulties in finding families for re-screening if needed after hospital discharge. Families report false addresses, live in cars, don't understand the importance of the possible problem, give false reports of "pass" results to social workers, and are transported from one hospital to another without a current flow of hearing screening information.
B. Reluctance of some primary care physicians to believe in the need for re-screening when the baby appears to hear "OK". Hesitancy to upset families with possible problems before they are confirmed from all types of medical homes. Changing of doctors and health plans with disconnection with paperwork flow indicating the need for re-screening. Usually with a confirmed "refer" physicians are more apt to approve additional diagnostic testing.
C. Family understanding and acceptance of information presented by audiologists regarding hearing loss. Often the diagnosis takes at least one or two months to complete with resultant hesitancy to accept the diagnosis with an infant under 3 months of age.
D. Finding and feeling comfortable with a medical home for their infants is difficult. More than one half of the births in New Mexico are Medicaid eligible and entered into one of three Managed Care Organizations (SALUD). These form a medical home for all infants but are not equally responsive to the special health care needs of these children. Other insurance plans also welcome new babies into their medical home. Not all plans or physicians have equal commitment to providing services to identified infants.
E. Parents are often overwhelmed with the diagnosis of hearing loss and decisions which they must make about services for their infant. The variety of "treatment options" is difficult to understand much less decided upon for these families. Service coordinators can help families through this "maze" of information and help them to develop confidence in their own ability to make decisions for their families.
F. Hospitals report problems with having to take over screening without help from the state. They voice concern with any program that would not be "cost neutral" and insurance companies as any real support for the individual hospitals. Already negotiated "DRGs" and rates for births have not included newborn hearing screening before discharge. While this is an option for the future, the financial impact on most hospitals would be relatively small.
2.1.5.2 Existing Services and Support
The CMS program has offices located in 24 counties with outreach to all 33 counties throughout the state. Initial training has been provided to all service coordinators and clerks at three CMS statewide meetings and at team meetings in all four health districts of the state. This training is on-going with state-wide training planned for the next statewide meeting and districts. Linkage between local hospitals and FIT workers has been established, but must be reviewed and strengthened to be workable. CMS Program Managers have also been involved with local hospitals and in planning for problem solving individual situations.
The New Mexico School for the Deaf STEP*HI Program has an extensive network of 50 trained service providers based in communities across the state. STEP*HI is a replication site of the SKI*HI model with 17 years experience supporting families with Deaf and Hard of Hearing children in the choice and implementation of their preferred communication/educational methodology. NMSD STEP*HI also has a Deaf Role Model Program to help families in their understanding of Deaf Culture and in fostering a positive self identity in their children. The New Mexico School for the Deaf operates community based preschools in 4 locations in the state. NMSD STEP*HI and Preschools are subject to Federal and State Regulations under IDEA Part C and B.
The Presbyterian Ear Institute (PEI), a private, nonprofit corporation, was established in 1987 to serve deaf and hard of hearing individuals. Presbyterian Ear Institute operates six main programs: Universal Newborn Hearing Screening, A Parent-Infant Program, PEI Oral School, a Cochlear Implant Program, a Speech-language Program, and a Research and Education Program. The Parent-Infant Program provides information and support to families as they begin to consider communication options for their deaf or hard of hearing toddlers. Trained professionals working in this program are dedicated to helping parents cope with and understand their infant's hearing loss. Parent education as well as direct speech and language therapy is provided. PEI maintains a leaner hearing aid bank and a library for families with deaf or hard of hearing children. It also has a support network of parents who can provide reassurance and guidance to families of newly diagnosed infants and toddlers. Services are offered on a statewide basis.
Audiologists who provide diagnostic services for infants are strong advocates in finding funding for hearing aids for identified children. There are times, however when local service clubs and insurance, etc. cannot provide funding and parents must delay fitting of hearing aids due to lack of funds. The availability of digital, programmable hearing aids which have demonstrated utility for many infants are of course more expensive and a greater strain on parent's budgets.
In summary, services of hospitals, audiologists and early intervention programs are available throughout the state to assist CMS staff in full implementation of the Hear Early Program. Additional required resources are delineated in the later sections of this program narrative.
2.1.6 Needs Assessment
Over the last ten years, CMS has completed two state-wide needs assessments focused on access to care and identified needs of families with children with special health care needs. These needs assessments included ethnic groups throughout the state, families from all economic levels and for all diagnoses for children with special needs. During both needs assessments, the first a written survey, the second a written survey with focus groups of parents and health professionals, children with hearing loss were identified. These families reported similar problems to those of other diagnoses and disabilities-a need for additional information about their child's condition, and services available throughout their community, state and the nation, as well as payment for services. More recently, CMS also conducted a survey in a southern county about needs of a medical home as defined by the American Academy of Pediatrics. This current year a needs assessment is being conducted among physicians especially those with special interest in providing services to children with special health care needs to determine areas in which they would like training-especially related to providing a comprehensive medical home.
A survey was completed of audiologists providing diagnostic services to infants to determine their identified needs. Overall, training in providing services to infants as well as current methodology in fitting hearing aids in very young children were identified as top priorities. Audiologists reported long term use of diagnostic ABR equipment but less experience with OAE equipment. Most recent research indicates that diagnosis and assessment of infants with hearing loss requires both ABR and OAE testing to rule out audio neuropathies and help determine the more appropriate treatment modality.
CMS/FIT workers were given a survey to determine their feelings of competencies in assisting families of infants with hearing loss and the areas in which they feel less comfortable in providing these services. CMS/FIT staff reported their strengths were in working in a family-centered environment and in helping empower families to meet their child's needs. They did, however, report needing training about issues related to hearing loss-both social and medical, and more information about treatment options for infants and young children with hearing loss.
Members of the early intervention task force were also asked to report their needs. Currently there are a number of community early intervention programs which have provided general programs for infants with disabilities but not necessarily focused on hearing loss. Developmental tools for this population are now becoming more available and used and these agencies would like training in their use, as well as more information around hearing loss in general.
Families of infants identified with hearing loss have participated in all levels of administration of the Hear Early Program. They all report being overwhelmed with the process, the diagnosis and understanding the many options available to them. Most report that the training provided by Parents Reaching Out and Family Voices for families with all disabilities has been valuable. Information about hearing loss and options continues to be an important need identified by parents. A number of these families also describe difficulties in working with their child's medical home or primary care physician around hearing issues. Paying for and finding appropriate services was also reported as significant problems for parents.
A survey was conducted by the Commission for the Deaf and Hard of Hearing, the STEP HI Program and the Presbyterian Ear Institute of members of the deaf community around their support for universal newborn hearing screening. The results of these surveys are attached in Appendix A. Overall, considerable support was reflected in responses from the many individuals who responded to the questions about hearing screening. Areas of concern reflected appropriate services being provided for the infants identified through the program.
As a part of SJM24, physician groups were asked to indicate their support for universal infant hearing screening and their concerns or needs for developing and maintaining a comprehensive program. Their statements are included in Appendix A and reflect a concern for maintaining physician involvement at all levels and assurances that hospitals will not be forced to drop the program for lack of funds. The local Pediatric Society also reflected the national AAP policies around universal hearing screening programs, and the needs of families to have appropriate information in a timely manner without undue concern about false positive results from screening.
Funding for provision of training identified by CMS, early intervention programs and audiologists will help to move them into areas of confidence in their own abilities and in providing appropriate services to families which are family-centered, community based, culturally competent and coordinated. "Cross training" from CMS, audiologists, physicians, parents and early interventionists should create a pool of expertise around issues of hearing loss in the state and move New Mexico closer to full implementation of the Hear Early Program.
2.1.7 Collaboration and Coordination
New Mexico has a functioning universal newborn hearing screening program. It has developed collaborative and coordinative relationships with the major groups in New Mexico which are advocates for families and children, and which provide direct services to children with hearing loss and other early intervention services. There are four primary areas of continuous and direct input from these agencies, individuals and organizations:
2.7.1.1 Advisory Council
The Advisory Council has been meeting quarterly for the last two years with a dedicated and vocal membership. A roster of the members and a brief description of the group(s) they represent is included in Appendix B. In general, representation includes: CMS, Commission for the Deaf and Hard of Hearing, the All Indian Pueblo Council, New Mexico School for the Deaf (NMSD), Presbyterian Ear Institute (PER), parents, audiologists, speech language pathology, pediatrics, neonatology, otology, deaf educators, early intervention, deaf individuals, and service coordinators.
2.7.1.2 Task Force Membership
There are three task forces which carry on the planning and coordination activities of the program: screening, assessment/amplification, and early intervention.
A. Screening
There are four standing members of this group including representatives from the other two task forces, CMS and the Natus representative for New Mexico. Meetings are held approximately 3 times per year with hospital staff in attendance who actually screen infants. Topics are selected in advance for these meetings which focus on screening related questions and interaction with families about the screening and results.
B. Assessment/Amplification
Members of this group meet monthly and have developed a diagnostic protocol for infants referred through the program. This group travels from throughout the state and is generally limited to 10 members who have demonstrated capability to complete diagnostic testing for infants. It represents audiologists with a special interest in working with very young children.
C. Early Intervention
Members of this task force have met for nearly two years monthly or bi-monthly to develop a protocol for referral to early intervention services. This is a broad based group representing early intervention programs throughout the state including NMSD STEP HI, Presbyterian Ear Institute, Growing in Beauty (A Navajo Early Intervention Program), and others, the IDEA Part C Program, CMS Service Coordinators, the University Affiliated Programs conducting developmental evaluations, parents, a pediatrician, a deaf community representative, and others with an expressed interest in this topic. The screening program is also supported by the New Mexico State Interagency Coordinating Council (ICC) for IDEA, Part C. A letter of support is included in Appendix B from this group.
D. The Deaf Community
Members of the deaf community are included in collaborative relationships as listed above. The Chair of the Advisory Committee is the Director for the Commission for the Deaf and Hard of Hearing. Deaf individuals participate in the decision making and discussion for the early intervention task force and have contributed to needs assessments and all activities of the program. Deaf educators, deaf consumers, deaf parents, and parents of deaf children, and deaf individuals have expressed support for the program and participate as their time and interest allows. The needs assessment received significant contributions and interest from members of the deaf community.
2.1.8 Goals and Objectives
Goal 1: By 2004, to achieve full implementation of the Hear Early Program with at least 90% of newborn infants receiving hearing related services appropriate to their needs as documented by the Hear Early Tracking System.
Obj 1: By 2001, to achieve a referral rate of less than 3% after at least two screens before hospital discharge.
Obj 2: By 2001, to have more than 90% of referrals upon initial hearing screen re-screened at local hospitals or other locations within one month of hospital discharge.
Obj 3: By 2002, to have 90% of referrals receive assessment and diagnostic services by 3 months of age.
Obj 4: By 2002, to have 90% of infants identified with hearing loss placed into early intervention programs by 6 months of age.
Obj 5: By 2003, to have baseline developmental information on 90% of new placements with hearing loss into early intervention services.
Obj 6: By 2004, to have more than 90% of newborns receiving hearing related services as appropriate for each child.
Obj 7: By 2001, to have at least 90% of newborns with referrals on initial screens placed into a medical home.
Obj 8: By 2001, to have at least 90% of newborns with referrals linked to family support systems including CMS, parent to parent support organizations, or other groups as accepted by the families.
Goal 2: By 2004, achieve full integration of the Hear Early Program into on-going programs, policies and practices of the state at community and state levels.
Obj 1: By 2001, to assure that all hospital referrals are sent to CMS local offices within one week of hospital discharge.
Obj 2: By 2002, to assure that families receive information on needed audiology services in a timely manner as part of initial referrals.
Obj 3: By 2001, to assure that families of infants born at home receive hearing screening within one week of birth.
Obj 4: By 2002, to assure that referrals to the early intervention system upon diagnosis of hearing loss receive appropriate and timely information on educational options and follow guidelines adopted by the IDEA Part C program.
Obj 5: By 2001, all infants needing hearing aids will have access to funding for them either through Medicaid if eligible, CMS if eligible or the Hear Early Program special initiatives established for the program.
Obj 6: By 2004, individuals and programs providing services to infants and children with hearing loss will routinely receive sufficient training and information to provide strategic services for this population in a family centered, community-based, culturally competent coordinated manner.
Goal 3: By 2001, mandatory newborn hearing screening by all hospitals will be passed by the New Mexico Legislature.
Obj 1: By May 2000, secure participation of Insurance Commissioner in developing legislative plan.
0bj2: By June 2000, secure participation of Hospital Association in developing legislative plan.
Obj 3: By September 2000, contribute model bill to legislative members, committees, bill sponsor for introduction in Legislative Session.
Obj 4: By March 2001, comprehensive mandatory legislation passed by Legislature and signed by Governor.
Obj 5: By July 2001, develop policies and procedures for implementation of the legislative mandate for universal hearing screening.
Goal 4: By 2004 to contribute to public awareness and understanding of the number and needs of infants and young children with hearing loss at community, state and national levels.
Obj 1: By 2001, to increase public awareness of Hear Early Program through the materials distributed to families of newborns, media participation and presentations to appropriate groups.
Obj 2: By 2002, to prepare and disseminate regular reports on the status of the program at the state and national levels.
Obj 3: By 2003, to document linkages of local and state levels of families, hospitals and early intervention initiatives.
Obj 4: By 2004, to assure that public accepts the Hear Early Program and expects hearing screening and follow up for all newborns.
2.1.9 Required Resources
Any grant funds received for implementation of this program will be used for the purposes specified in this application. All appropriate and necessary fiscal control measures and accounting procedures are already in place with the Department of Health and the Public Health Division.
2.1.9.1 Staff
1 FTE Program Coordinator position is needed for growth toward full implementation of this program. A job description for this position is attached in Appendix A. This position does not currently exist within CMS. This program coordinator will have major responsibility for "closing the cracks" at transition periods between hospital referral to re-screen, from re-screen to assessment, and from diagnosis to early intervention through further development of the Hear Early tracking system and interaction with appropriate parties for each individual infant.
2.1.9.2 Travel
Funds for the Coordinator, Director and other key individuals in implementation of the program to attend out of state training offered by technical assistance organizations and other professional organizations. Out of state travel is severely restricted in the Department of Health and this type of travel will only occur if included in a federally funded budget.
2.1.9.3 Training
Training from outside agencies and nationally accepted professionals is needed for the Assessment Task Force members, and for audiologists throughout the state in the diagnosis and "treatment" of infants with hearing loss. Training is also needed for Early Intervention Task Force members on issues related to their area of expertise from nationally accepted professionals. In particular successful approaches documented by research need to be shared with members and other early intervention agencies. Administration of a developmental profiling tool and regular re-testing requires targeted training to all of the early intervention agencies in order to standardize developmental information available for use by early intervention agencies, physicians and parents in evaluating progress through any option approved by the family.
2.1.9.4 Printing, Materials, Public Awareness projects, misc.
Printing of materials specially developed for this program is important in the continual availability of information for CMS staff, professionals, parents and other organizations. Development of special materials is often beyond the expertise of staff and requires special contract assistance on a project by project basis.
2.1.10 Project Methodology
New Mexico has already developed a functioning Hear Early Program with all of the key components identified in application guidance for full implementation of the program. However, each of the components has experienced problems in achieving at least a 90% coverage rate for identified infants. The most important problem is that 50% of families do not follow up after initial referrals. This causes a "chain-reaction" in lower numbers of infants to move on to the next level and results in a less than optimal overall system. It works well and in a timely manner for approximately half of the infants which would be expected to enter the program. Special help at "transition points" from screening to re-screening, from initial referral to assessment and diagnosis, from diagnosis to early intervention in ways that meet needs of parents, families and physicians is viewed as a focal point for intervention with funds available through this application.
2.1.10.1 Coordinator
The availability of a full time coordinator should help hospitals and others in finding families and track those who do not follow up at this point. Local CMS service coordinators attempt to contact families as do local hospitals. But many families remain very difficult to find or are un-cooperative in the process of re-screening and related activities. After several attempts to locate families service coordinators move on to other families. A coordinator should be able to follow-through in many ways to assist CMS service coordinators in locating these families e.g. using other health programs including Medicaid to help find these infants, communication with medical homes for help in securing re-screening etc.-activities which are time consuming and can be frustrating.
A coordinator can also work through tasks associated with reaching the identified goals and objectives. This individual can serve as a catalyst to coordinate all activities of the program and building resources to help in the program through the next 4 years. This position can also assure that all paperwork and the flow information through the system is timely and accurate. Currently, reports are sent to the Hear Early tracking system which records them but has difficulty identifying missing information for use in follow-up activities. This results in statistics which have less than optimal confidence intervals and confusing information
Finally, the Coordinator can work with hospitals in streamlining their screening programs and providing materials to new families. The position can provide staff support to the work of the task forces and Advisory Council to maximize the outcomes from these groups.
2.1.10.2 Planning
The Director and the Coordinator, with input from primary individuals assisting in implementation of the program can provide leadership in planning, implementation and evaluation of the program. At this point in the Hear Early Program, after four years of development and implementation, a look to needs assessments was undertaken to use in planning for identification of effective strategies in achieving full implementation and refinement in the next four years. This document has forced both short and long range planning for the program and provided a directive for successful change and attainment of program goals and objectives. The initial Senate Memorial 24 Study also assisted the program in examining it's strengths and weaknesses and asking for help in maximizing strengths and eliminating weaknesses.
Further refinement of the Hear Early Tracking System and Database will provide specific information for use in planning effective interventions with the current system to attain sated goals and objectives. And of course evaluation is a main ingredient of future planning as the evaluation protocol is carried out by "in-house" staff and an outside evaluation.
2.1.10.3 Implementation
Full integration of the program with other activities of the CMS program will also farther the implementation of the Hear Early Program. The current CMS needs assessment is focused on full implementation of the medical home concept for all children with special health care needs and is looking to physicians for information on building on this concept throughout the state. Including hearing issues with these activities will help both initiatives. Utilizing cultural competency initiatives of CMS will also assure that all New Mexicans have fall participation in the Hear Early Program and any special needs on the basis of cultural issues are addressed and incorporated into the Hear Early Program from screening through early intervention.
Setting a target of 90% participation at each level of the program will give focus to professionals involved at each level. With the help of the Coordinator each component can focus on this level of achievement within the four year time frame. This breaks down the overall needs of the entire state into meaningful and achievable parts. Training from professionals and other successful programs provides a level of interaction which raises standards and sets achievable intervention at all levels. Since protocols are nearly fully developed, this refinement will make the program run more smoothly and seamlessly for families and provide reinforcement for professionals that they are making a difference.
Additional impetus gained from a public awareness initiative (which has not been a priority during the first four years of the program), will also provide cohesiveness as the public comes to expect that this program is available and functions at a high level. As primary care physicians look to newborn hearing screening reports in medical records (as has already happened at Indian Health Service Facilities) as important information for families, the program will be further integrated into the medical care children receive.
A legislative mandate will assure that all hospitals will continue screening and purchase new equipment and supplies when needed for their program. The number of hospitals with audiologists on staff may grow from the current number of four at private hospitals making the program more community based. Hopefully, the mandate will include a funding mechanism which will further integrate the program into the regular services which all children receive.
Training received by professionals and families alike will move the Hear Early Program toward full implementation with refinement of "fine points" of transitions and interventions. Review of the Family Resource Manual with the continued input of professionals and parents will facilitate the process for many families. It will also provide a guide for professionals to use in assisting families as they move through this process as well.
Evaluation which will be outlined in the next section closes the feedback loop of information for planning and implementation. All evaluation to this point has been process evaluation from within the program. An outside evaluation can bring many a broader, unbiased perspective based on data into the process and provide much needed suggestions and recommendations for program development.
The following are copies of the Personnel Allocation Chart and the Project Activities Time Allocation Table. The documents provide a complete picture of the work to be done on the project supported by this application.
PERSONNEL ALLOCATION CHART
Project Title: Integrated Services for Children with Special Health Care Needs
Project Director: Mary Olguin
Budget Period: 04/01/00 to 03/30/01 Project Year: 1
State: New Mexico
| Objectives and Approaches |
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| Director | Coordinator | Social Worker | Contractors Consultants | Hospitals | |
| Obj 1.1 By 2001, achieve a referral rate of less than 3% after at least two screens before hospital discharge. |
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| Obj 1.2 By 2001, have more than 90% of referrals upon initial hearing screen re-screened at local hospitals or other locations within one month of hospital discharge. |
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| Obj 1.7 By 2001 have at least 90% of newborns needing diagnostic testing for hearing loss placed into a medical home. |
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| Obj 1.8 By 2001, have at least 90% of newborns with a diagnosis of hearing loss linked to family support systems including CMS, parent to parent support organization or other groups accepted by the families. |
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| Obj 2.1 By 2001, assure that all hospital referrals are sent to CMS local offices within one week of hospital discharge. |
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| Obj 2.5 By 2001, all infants needing hearing aids will have access to funding for them either through Medicaid if eligible, CMS if eligible or the Hear Early Program special initiatives established for the program. |
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| Obj 3.1 By May 2000 secure participation of Insurance Commissioner in developing legislative plan |
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| Obj 3.2 By June 2000, secure participation of Hospital Association in developing legislative plan |
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| Obj 3.3 By September 2000, contribute model bill to legislative members, committees, bill sponsor for introduction in Legislative Session |
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| Obj 3.4 By March 2001, comprehensive mandatory legislation passed by NM legislature signed by Governor |
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| Obj 4.1 By 2001 to increase public awareness of Hear Early Program through materials distributed to families of newborns, media participation and presentation to appropriate groups |
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PROJECT ACTIVITIES TIME ALLOCATION TABLE
Project Title: Integrated Services for Children with Special Health Care Needs
Project Director: Mary Olguin
Budget Period: 04/01/00 to 03/30/01 Project Year: 1
| Objectives and Approaches | Start Date | Completion Date | Tracking/Evaluation Methods |
| Obj 1.1 By 2001, achieve a referral rate of less than 3% after at least two screens before hospital discharge. |
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The Hear Early database will document in data from screening units a 3% or less referral rate (fail on screening test in either ear) after at least 2 attempts before discharge both overall for state and for 90% of hospitals. |
| Obj 1.2 By 2001, have more than 90% of referrals upon initial hearing screen re-screened at local hospitals or other locations within one month of hospital discharge. |
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The Hear Early Database will document that at least 90% of referrals after hospital discharge will have reported re-screens with results sent to Santa Fe. |
| Obj 1.7 By 2001 have at least 90% of newborns needing diagnostic testing for hearing loss placed into a medical home. |
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The Hear Early Tracking system will have a primary care physician entry for children needing diagnostic testing. At least 90% of these PCP's will provide a medical home as documented by CMS. |
| Obj 1.8 By 2001, have at least 90% of newborns with a diagnosis of hearing loss linked to family support systems including CMS, parent to parent support organization or other groups accepted by the families. |
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CMS FIT worker ---- case manager progress notes will report at least 1 family contact, a referral to Parents Reaching Out, La Voz de Ninos and Step Hi. |
| Obj 2.1 By 2001, assure that all hospital referrals are sent to CMS local offices within one week of hospital discharge. |
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The Hear Early Tracking system will document that 90% of hospital referrals are received within one week of discharge from hospitals with no audiologists. |
| Obj 2.5 By 2001, all infants needing hearing aids will have access to funding for them either through Medicaid if eligible, CMS if eligible or the Hear Early Program special initiatives established for the program. |
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CMS service coordinator progress reports will document that all families of infants needing hearing aids will have been referred to Medicaid if eligible, to CMS if eligible and to insurance if eligible. |
| Obj 3.1 By May 2000 secure participation of Insurance Commissioner in developing legislative plan |
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The Hear Early Director will meet with Insurance Commissioner and develop a plan for including insurance companies input re: mandatory Universal Newborn Hearing Screening financing. |
| Obj 3.2 By June 2000, secure participation of Hospital Association in developing legislative plan |
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The Hear Early Director will meet with NM Hospital Association Director and develop a plan for including hospital input into mandatory screening legislation. |
| Obj 3.3 By September 2000, contribute model bill to legislative members, committees, bill sponsor for introduction in Legislative Session |
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The Hear Early Director will secure copies of model mandatory screening legislation from CDC, AAA and other groups if available and share them with legislative Council and Health and Human Services Committee. |
| Obj 3.4 By March 2001, comprehensive mandatory legislation passed by NM legislature signed by Governor |
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Copy of signed legislation available to program. |
| Obj 4.1 By 2001 to increase public awareness of Hear Early Program through materials distributed to families of newborns, media participation and presentation to appropriate groups |
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Hear Early Director will have copies of materials distributed to families of newborns, the # of calls to 800#, use of PSA's and other spots, the # and location of group presentations, a sample of families will report that at least 10% have prior knowledge of Hear Early. |
2.1.11 Plan for Evaluation
Process evaluation for this project will be on-going as staff move forward with regularly planned activities-considering the utility of approaches and completion of tasks. Results of this process will be used each year as plans for the upcoming year are reviewed. The CMS needs assessment is a regular opportunity to include questions, focus groups or appropriate methodology in understanding attainment of targeted activities for the Hear Early Program.
The CMS newborn hearing screening objective for MCH Reporting is also a regular mechanism for reporting on the number of infants receiving services. It is also important in integrating this program further into the regular CMS planning, implementation and evaluation activities.
Annually a link to the birth file from Vital Records and Health Statistics will serve an a measure of the number and percentage of actual births which are screened. It will take away subjectivity on the part of the hospitals which report all births as it compared actual live birth reported through the official system of reporting and issuing birth certificates. CMS receives the birth file for use with birth defects surveillance and an electronic comparison could serve as the beset measure of the outcomes to be attained.
At least every two years, an outside evaluator will be utilized to measure outcomes achieved during the time period relative to stated goals and objectives for the four year project. The Project Activities Time Allocation Table has a section for tracking/evaluation methods. We have tried to develop a performance evaluation indicator for each of the stated goals and objectives and a tracking method for activities. The Director will meet with an evaluator who is not a part of the program to review proposed measures. Changes will be established and a review of progress will be made at two years and four years. Both efficiency and effectiveness will be reviewed in areas of planning, implementation and the evaluation process. If necessary, changes in tasks may be made to more clearly link outcomes to goal and objective attainment.