Overview and context of population domain

Of all Title V populations, children and youth with special healthcare needs (CYSHCN) are most vulnerable to changes in our healthcare system. Louisiana has one of the highest percentages of CYSHCN in the country, with over 23% of children ages 1-17 having a special health care need. Furthermore, nearly one quarter (23.5%) of CYSHCN in Louisiana do not receive effective care coordination, with only 36.6% of CYSHCN receiving ongoing, comprehensive care within a medical home.1

 

The national Medical Home healthcare delivery model was specifically designed to meet the needs of CYSHCN and has become the recommended standard of care for all children. Screening, resource linkage, transition support, and timely access to comprehensive, coordinated care in a medical home are critical to ensure that CYSHCN minimize their disabilities and maximize their independence.

 

CYSHCN priority needs and performance measures

Priority needs

The 2020 Needs Assessment priority ranking process underscored the importance of ensuring access to specialized clinical care and care coordination for Louisiana’s CYSHCN population. The 2021-2025 State Action Plan strategies for this population domain are aligned with the following population priority:

• Ensure all CYSHCN receive care in a well-functioning system

 

To strengthen the systems and supports that shape these factors, Louisiana Title V continues to execute strategies that align with the following systems priorities:

• Partner with families, youth, and communities at all levels of systems change
• Ensure Title V strategies are outcomes- focused and rooted in essential public health services

 

Performance Measures

Throughout the FFY 2021-2025 strategic period, Title V investments in the children and youth with special healthcare needs (CYSHCN) population domain in Louisiana will contribute to improvement of the following outcomes at both state and national levels:

• Percent of children and youth with special health care needs (CYSHCN), ages 0 through 17, who receive care in a well-functioning system (NOM 17.2)
• Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling (NOM 18)
• Percent of children, ages 0 through 17, in excellent or very good health (NOM 19)
• Percent of children, ages 0 through 17, who were unable to obtain needed health care in the past year (NOM 25)

 

Recognizing the evidence of the strong linkages between the desired outcomes and interventions promoting access to quality medical homes, Title V supported programs in Louisiana are delivering actions to improve the following performance measure:

• Percent of children with and without special health care needs, ages 0 through 17, who have a medical home (NPM 11)

 

The strategies implemented to promote improved access to quality medical homes are evidence-based, and adapted to the unique context of the state of Louisiana. In FFY2024, LA Title V will implement strategies to achieve the following objectives for the children and youth with special healthcare needs domain: 

• By June 2024, conduct an in depth analysis of the National Survey of Children’s Health oversample data to better understand the CYSHCN population needs
• By June 2024, conduct an analysis of MCO Case Management Quality Improvement reports to better understand which CYSHCN are receiving MCO case management services.
• By September 2024, finalize and implement a communications plan to promote awareness of Family Resource Center (FRC) services through all BFH programs. 
• By September 2024, Pediatric and Perinatal healthcare providers have increased knowledge about recognizing and responding to mental health needs of their patients.
• By June 2024, develop a list of all of the variables required for the Sickle Cell Registry and identify the resources required to implement and maintain the Sickle Cell Registry
• By June 2024, inputs from family-led organizations are regularly utilized to develop or adapt trainings on the concept of high quality medical home to local pediatric healthcare providers to tailor trainings to the needs of local communities
• By September 2024, LBDMN will increase the number of referrals to the FRC by developing protocols to include children who could benefit from a referral needs assessment, but who do not meet LBDMN case definition for inclusion in the registry. This would include children under three years old with developmental and medical involvement due to a birth defect or medical condition outside of the National Birth Defects Prevention Network standards for reporting.
• By September 2024, in partnership with the FRC, LBDMN will develop protocols for contacting families while infants are still in NICU through partnerships with hospital social workers or RN case managers. Track initial contacts including introductions of availability of referral services post discharge along with a tracking mechanism for follow-up.

 

 

Planned Title V efforts and alignment with CYSHCN health priorities

 

In FFY2024, Louisiana will continue reevaluating the need for ongoing Title V investment in the safety net service provision and will continue efforts to broaden population reach and increase system capacity to serve all CYSHCN. Moving forward, Title V will also continue to expand the CYSHCN population focus beyond state-defined, condition-specific populations to better align with the Maternal and Child Health Bureau (MCHB) CYSHCN definition: “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

 

Expanding access to MHs among CYSHCN requires population-level data related to children’s health as well as families’ needs and experiences with care and supportive resources. The 2020 Title V Five-year Needs Assessment revealed that Louisiana did not have sufficient data to produce reliable estimates for key sub-populations, including CYSHCN. In order to ensure sufficient data for monitoring progress, Louisiana committed  Block Grant funds for data from the National Survey of Children's Health (NSCH). In 2021, an oversample was implemented to ensure reliable two-year combined estimates for all Title V NPMs. While the goal for reliable total population estimates was achieved, Louisiana’s commitment to disaggregating and analyzing data by various demographic characteristics and among key sub-populations resulted in the recognition that a larger oversample would be required. In 2022, Louisiana significantly increased the oversample investment with the goal of achieving reliable estimates disaggregated by race-ethnicity and CYHSCN status. The first year of data from this oversample will become available in the Fall of 2023. As the oversample was continued for 2023 data collection, Louisiana expects to receive data enabling reliable two-year estimates disaggregated by race and CYSHCN status in Fall 2024. HRSA has confirmed that the funding will be directed from the state’s Block Grant award as direct assistance allocation.

 

Population Priority: Ensure all CYSHCN receive care in a well-functioning system

Increase Title V organizational capacity to utilize National Survey of Children’s Health (NSCH) data: For Louisiana Title V to meaningfully operationalize the MCHB CYSHCN definition, BFH will need to understand the demographics of the CYSHCN in the state who fall under the broader definition. As the only data source that collects data in alignment with the MCHB definition of CYSHCN, the NSCH will be an increasingly valuable resource for informing Title V’s efforts to ensure all CYSHCN receive care in a well-functioning system. Title V funds have been allocated to allow for a substantial oversample of the 2023 NSCH to ensure reliable disaggregated data by race and CYSHCN status for all NPMs. Epidemiology and program staff across the bureau will work to increase familiarity with and utilization of NSCH data to inform Title V strategies for systems change.

 

Conduct targeted ongoing needs assessment activities and research projects to identify gaps and opportunities for improvement within the state systems of care for CYSHCN: In FFY2022, BFH completed the second phase of its survey of subspecialty providers. This phase of the survey was designed to assess availability of subspecialty providers for pediatric patients and the types of insurance accepted by available providers. In FFY2023, BFH closed the inquiry and aggregated the data in order to begin comparing provider availability data with the utilization of services in the OPH Parish Health Units (PHUs). Additionally, the team analyzed financial data for calendar years 2021 and 2022 for the costs of services provided in the PHU. Geospatial analysis was also performed to map the provider locations and access areas to compare with the locations of CSHS patients of corresponding specialty need. Both Medicaid and non-Medicaid patients and providers were included in the analysis to identify areas with gaps in access that may benefit from additional CSHS providers. The findings contributed to BFH leadership’s understanding of the current services distribution and underserved areas that would benefit from service expansion. In FFY2024, BFH will assess the role of Title V-funded subspecialty clinics in providing gap-filling care and identify opportunities for targeted provider- and/or system-focused strategies to ensure accessible subspecialty care for all children with complex medical needs in Louisiana. Louisiana will also consider whether or not there is a need for OPH to continue to host sub-specialty clinics and the opportunities to support those children and families differently if transitioned to care in their local healthcare delivery systems.

 

Equip clinicians around the state with the knowledge, tools, and resources to promote and provide care coordination and make appropriate community referrals in their personal practices:

Equip clinicians with care coordination knowledge, tools, and resources: In FFY2024, Title V will continue to shift historical CC efforts “down the MCH pyramid” in order to expand population reach and increase system capacity. As described in the FFY2022 report, Title V sponsors a small number of masters-level CC professionals in academic practices that possess specialized expertise with CYSHCN populations. These individuals will be largely shifting away from providing support to specific clinics in FFY2024 to focus on Title V’s provider training and systems building efforts, as well as FRC expansion strategies. In FFY2023, BFH redeveloped the role for one of the Title V-sponsored care coordinators to include a greater emphasis on medical home education and resource development. Over the next fiscal year, it is anticipated that this position will fully shift away from direct services to support MH didactic work, FRC services, and the BFH Social Work/Nursing Continuing Education Provider Unit (CEPU).

 

To ensure a smooth, staged transition for the practices that have been receiving salary support for the dedicated CC staff, BFH will continue collaborations with the partner clinic manager, ensuring the clinic’s shift from a clinic-based CC model to virtual FRC support is successful. During the transition phase, clinic teams will test various referral processes and formalize the most effective and efficient referral pathways. The care coordinator will train existing clinic staff on CC competencies, provide an updated clinic specific resource library, and support establishment of effective work flows and follow-up protocols for clinic staff roles identified by the clinic manager. The statewide nurse consultant, in collaboration with the clinic manager and CC specialist, will provide technical assistance (TA) and administrative support over the six to nine month transition.

 

Promoting MH and youth health transition (YHT):  In FFY2022, a Title V-funded MH/Early Periodic Screening Testing Diagnostic (EPSDT) coordinator position was established to support provider education expansion efforts and coordinate BFH’s collection of MH initiatives (CC, developmental screening (DS), and YHT). BFH recognized an opportunity to build state MH capacity through expansion of the Title V provider-in-training didactic offerings. During FFY2024, the MH/EPSDT coordinator will complete a Statewide Health Provider Graduate Education Landscape Assessment and use these findings to shape expansion strategies for provider-in-training educational offerings. The MH coordinator will engage the American Academy of Pediatrics (AAP) state chapter, along with existing higher-education partners to serve as thought partners and content advisors. This education strategy operationalizes pediatric MH improvement by ensuring early career professionals are prepared to offer comprehensive, coordinated, family-centered, MH services. 

 

BFH promotes CC as a core element of the pediatric MH and aims to engage medical, nursing, social work, and allied health schools, as well as practicing pediatric and family medicine providers, with existing and new virtual training on CC and associated topics. In FFY2023, BFH released a new provider CC toolkit designed to support practices with improving or expanding care coordination services at the clinic level. Over FFY2024, BFH will expand the CC toolkit content with a focus on publishing care pathway guides for high-need target populations, as well as developing micro-learning video content and marketing resources to enhance the toolkit. Additionally, Title V will offer Implementation, Training and Support (ITS) and customized technical assistance to support practices with establishing effective and efficient care coordination services in family medicine, pediatric, and adolescent primary care settings. With support from the BFH Communications team, the CC toolkit and ITS services will be promoted to state pediatric primary care providers and managed care organization (MCO) quality teams through LDH channels and established networks. The BFH MH team will continue to submit abstracts to provider conferences and convenings through provider professional organizations. Throughout FFY2024, BFH will develop, test, disseminate, and promote utilization of the CC toolkit to support clinicians with the provision of effective and efficient care coordination services.

 

Youth health transition: In FFY2024, BFH plans to continue to advance YHT service provision as another core component of the pediatric MH. Over the coming year, the MH team will continue the development of a web-based YHT toolkit, building from the resource released in 2021. The 2021 toolkit supported two YHT initiative pilots facilitated by the MH team. Lessons learned from these pilots will be used to inform updates and the transition of the toolkit into an interactive web-based tool. Each of the BFH MH toolkits (DS, CC, YHT) utilize a quality improvement (QI) framework, which allows practitioners to systematically improve the way health care is delivered to patients. QI offers a process for planning and testing changes on a small scale, with the goal of implementing them across the entire practice.

 

As described in the FFY2022 report, BFH is now authorized by the Louisiana State Nurses Association and State Board of Social Work to credential training for continuing education CE credit. In FFY2022, the Social Work/Nurse CEPU will continue to facilitate credentialing of training related to YHT, MH, and other provider education initiatives.  

 

Implementation of this strategy will be measured by ESM 11.1: Number of healthcare providers trained on Medical Home, Care Coordination and Youth Health Transition.

 

Support the redevelopment and expansion of FRC services as a virtual, statewide, resource and referral hub: As described in the FFY2022 report, the historically facility-based FRC now operates as a fully virtual, statewide resource center. As such, the FRC is available to assist all families in the state with identifying and enrolling in needed programs and services and navigating the insurance, health, early intervention, and school systems. The virtual FRC is staffed by a small number of resource specialists available by phone, email, and text. Additionally, the FRC is developing Spanish and Vietnamese translated resources with instructions on how to request language support. Historically, the FRC has been promoted most actively to families with CYSCHN identified through or served by BFH systems and programs (e.g. newborn screening,Louisiana Birth Defects Monitoring Network (LBDMN), etc.). Starting in FFY2022, strategies to disseminate awareness of FRC virtual services towards other MCH populations by integrating awareness messages into the other programs of the Bureau were initiated. These alignment efforts continued into FFY2023.  In FFY2024, BFH will develop a strategic communication plan to support staged growth of the FRC as well as to ensure equitable access across all communities in the state with specific emphasis on traditionally marginalized population groups. 

 

Support the Louisiana Provider to Provider Consultation Line in the development and implementation of a statewide consultation system for pediatric and perinatal healthcare providers: As a part of Louisiana’s strategies to build the capacity of pediatric primary care providers to appropriately screen, diagnose, treat, and refer CYSHCN who present with behavioral health conditions and concerns, the Provider-to-Provider Consultation Line (PPCL) is a relatively new system that has evolved from Title V’s innovations in piloting mental health consultation approaches to address the needs of perinatal and pediatric providers. In FFY2024 Title V will continue to provide strategy, policy, and communications support for the implementation of the MCHB-funded PPCL. In FFY2024, the PPCL will seek to increase use of program services by conducting outreach to providers across the state, especially to those practicing in clinics in rural and underserved areas. In FFY2024, the PPCL will also offer multiple training opportunities to increase the capacity of healthcare providers to recognize and appropriately respond to the mental health needs of pediatric and perinatal patients. These training opportunities will include a Pediatric Mental Health TeleECHO series. During the TeleECHO sessions, providers will present de-identified patient cases to expert teams who guide the learners through managing patients with complex conditions. Each session will provide mentorship through case-based learning, clinical discussion, and brief-focused didactic learning from each other's experiences to support knowledge in practice. Participation in TeleECHO sessions will provide opportunities for continuing medical education credits (CMEs) and continuing education for doctors, nurses, and social workers.

 

Enhance impact of the Medicaid managed care case management benefit: In FFY2024, the CC consultant will continue to support alignment and linkages between BFH’s various community and clinical services.  As described in the FFY2022 report, BFH has worked with Louisiana Medicaid as a part of the ongoing Title V/Title XIX interagency coordination meetings for systems-level collaboration around CC for CYSHCN. After the initial meetings, the CC consultant developed a CC SwimLane document to help identify points of intersection between LDH Medicaid, Medicaid MCOs, public health policy, public health provisional supports, and pediatric direct service providers. Over FFY2024, the CC consultant will lead continued alignment efforts between Title V and Medicaid to seek opportunities to improve access to and enhance CC services for CYSHCN enrolled in Medicaid. Additionally, the CC consultant, with the support of the MH team, will apply the 2022 MCHB Blueprint for Change for CYSHCN to these efforts, with a focus on removing barriers to care access, addressing system gaps for special need populations, and improving coordination of services.

 

To improve understanding of the six state MCO Case Management (CM) programs and beneficiary utilization of these services, BFH recently requested Medicaid MCO quarterly CM data. Over the course of the next fiscal year, BFH will conduct quarterly analysis of Medicaid MCO CM reports and will use the findings to expand knowledge of the CM service system and to support identification of areas of intersection and potential collaboration between Medicaid/MCOs and BFH to the system of care for CYSHCN.

 

Build the foundations for systems to monitor the health of individuals with sickle cell disease (SCD) and the ability of care systems to support people living with SCD: In FFY2024, Title V will continue to provide support to the Sickle Cell Foundations (community based organizations providing supportive services) and the sickle cell clinics. Additionally, Title V will provide staff support for the Sickle Cell Commission, a statutorily established advisory group charged with making recommendations to advance the health and care for individuals living with SCD. BFH will also work to promote two toolkits developed in FFY2023: the SCD toolkit for schools and the SCD pain management toolkit for emergency providers. Both of these toolkits were developed as a part of Initiative 5 of the LDH SFY 2023 Business Plan.

 

Nationally and in Louisiana, SCD is being elevated as a health issue that is overdue for investment and policy action. In Louisiana, there have been several substantive legislative actions related to SCD over the past several years, one of which charged LDH with establishing a comprehensive sickle cell registry. Patient registries and public health monitoring systems are foundational components to improving clinical care and quality of life for people living with SCD2. In FFY2024, Title V will provide some support for the foundational work required to establish Louisiana’s registry, which will  become a key data source for efforts to improve the health and care of individuals in Louisiana living with SCD. In FFY2024, BFH expects to link records from the newborn screening registry with other sources such as Medicaid claims, hospital discharge and emergency room data for preliminary analyses to inform the registry development. Please see Establishment of a Sickle Cell Registry in Louisiana:

Preliminary Research, Findings and Recommendations – February 2023 and Establishment of a Sickle Cell Registry in Louisiana: Feedback on Preliminary Recommendations – June 2023 for additional information.

 

 

System Priority Need: Partner with families, youth, and communities at all levels of systems change

Support family-led organizations to co-create capacity building initiatives which target local pediatric healthcare providers and promote high-quality medical home care that is tailored to the specific needs of CYSHCN and families in the community: As described in the FFY2022 report, the statewide network of FHF agencies is an integral part of the state’s efforts to promote access to resources and support for CYSHCN and their families. In FFY2024, BFH will continue to partner with FHF to build the networks’ internal capacity to understand and serve CYSHCN populations in their communities. As part of this work, FHF agencies will engage community health providers to ensure local providers are aware of the FHF resource and best-practices for supporting CYSHCN with community referrals.

 

Building on the historical success of FHF-BFH provider education workshops, FHF agencies, with collaborative support from BFH, will also facilitate annual Regional Information Workshops (RIW) for community providers in an effort to disseminate best practice recommendations for the care and support of CYSHCN. These educational and resource-sharing events are marketed in all regions of the state. RIW events have been provided virtually since the onset of Covid-19. In FFY2024, two of the FHF Networks will test a hybrid workshop, providing options for virtual and in-person participation.

 

During FFY2024, BFH’s collaboration with the FHF network will be facilitated through a team coaching model with individual TA offered as needed.

 

Implementation of this strategy will be measured by ESM 11.1: Number of healthcare providers trained on Medical Home, Care Coordination and Youth Health Transition.

 

Enhance partnerships with family and community-led organizations to increase population reach and support services for CYSHCN and families: In FFY2024, BFH will continue to strengthen its partnerships with community-based service organizations that provide individual support and resources to CYSHCN generally, through partnership with the FHF organizations, as well as specifically for children and families with SCD and those who are d/Deaf or hard of hearing (D/HH). In FFY2024, BFH is expecting to transition oversight of the contracts with the state’s regional Sickle Cell Foundations to the same section that supports the FHF activities. This alignment is intended to facilitate the connections between the local organizations and to align the approaches to CC with the definitions and standards developed over the past several years through Title V. BFH will also continue efforts to strengthen the capacity of local organizations to support and engage families with children who are D/HH and adults who are D/HH. This work will be led by the Louisiana Early Hearing Detection and Intervention (LA EHDI) program, with guidance from the State of Louisiana Advisory Council for the Early Identification of Deaf and Hard of Hearing Infants. The council is composed of fourteen familial and community stakeholders. The council is inclusive of parents whose children are diagnosed as D/HH, d/Deaf adults, representation from the Louisiana Commission for the Deaf and Louisiana Association of the Deaf, educational providers with experience working with deaf children, related medical providers, and the Louisiana Department of Education (LDOE) and OPH. These efforts are expected to include the continuation of EHDI regional collaboratives across the state, as the conclusion of 2023 will re-start the nine region tour. Each collaborative brings together EHDI regional stakeholders, including the family-to-family support organizations, Hands and Voices (H&V) and Guide By Your Side (GBYS); Early Steps providers; the Parent-Pupil Education program (PPEP); and hospital screening staff and audiologists, to review region-specific data related to EHDI’s 1-3-6 goals (screening by 1 month of age, identification by 3 months of age, and enrollment in early intervention by 6 months of age). Each collaborative features a minimum of one parent of that region willing to share their experience through the identification process. Potential strategies to address barriers are identified to improve the number of children who are connected to community-based services for audiological testing and early intervention, and serves to identify the needs of the diverse population and aid in developing an inclusive plan for improvement within the EHDI system.

 

The GBYS program features both parent guides (parents of children who are identified as D/HH and have received specialized training) and deaf guides (d/D adults willing to share their unique perspectives with families, have also received specialized training). LA EHDI will continue collaboration with the GBYS program by supporting the completion of quarterly self-assessment checklists for each guide to indicate areas of strengths and weaknesses and to determine training needs.

Families who decline the support offered by the H&V program will be offered website links for resources, as well as the contact information in the event support is desired in the future. The H&V program will continue to host family events around the state, with deaf guides in attendance for networking and support. While most of these efforts are supported by other federal awards, they are coordinated under the direction of the state Title V program with strategy, policy, and communications support largely funded through Title V infrastructure allocations.

 

 

System Priority: Ensure Title V strategies are outcomes- focused and rooted in essential public health services

In alignment with national standards, optimize efficiency and quality of services delivered through BFH Children’s Special Health Services (CSHS) and Genetics safety-net clinics: As described in the FFY2022 report, the CSHS and Genetics programs developed a clinical services QI plan to assure that BFH CYSHCN clinical programs are providing the highest quality services to all the intended populations. In FFY2024, BFH will continue implementing Plan Do Study Act (PDSA) cycles with OPH CSHS clinic staff and will conduct training and provide TA to improve clinical outcomes and achieve performance measure targets. CSHS central office staff will look at methods to ensure removal of social barriers limiting access to quality health services in the community setting and develop a standard of equitable community care for all children with special healthcare needs across the state.

 

Collaborate with Medicaid and the State Laboratory to develop policy, operational, and funding mechanisms to support universal newborn screening for all conditions recommended by U.S. Secretary of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders on Newborns and Children:  In FFY2024, BFH will maintain and continue to strengthen the state’s newborn screening system to ensure all newborns in Louisiana are tested for all conditions listed on the recommended universal screening panel of the U.S. Secretary of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders on Newborns and Children. In FFY2022, BFH promulgated rules to update the panel to include Spinal Muscular Atrophy, Mucopolysaccharidosis type I, and Glycogen Storage Disease Type II. The next condition BFH will work to add to the panel is X Linked Adrenoleukodystrophy.Over the past several years, Title V leadership has worked with OPH and LDH leaders to propose an important modernization to the state newborn genetic screening law to create a more defined process and timeline for adding new conditions to the panel. In the absence of defined processes and timelines, the planning, coordination, and commitments needed between the public health laboratory, the OPH Genetics program, Medicaid, agency priority setting and budgeting cycles, and the legislature had become overly complex and resulted in Louisiana falling behind in the adoption of nationally recommended conditions. Frustrated constituents turned to the legislature each year to mandate the study of and or addition of new conditions. While this resulted in some conditions being added, it also created even greater complexity to a cumbersome law and process. In the 2023 Regular Session of the Louisiana legislature, a bill was proposed that ultimately simplified the law and created specific timelines and accountabilities for the state to remain current with national recommendations. In FFY2024, BFH will work to implement the state’s newly-modernized newborn screening law, beginning with new conditions recently added to the Recommended Uniform Screening Panel (Mucopolysaccharidosis type II in 2022 and Guanidinoacetate methyltransferase deficiency in 2023).

 

Improve timely linkage to care in screening and surveillance systems: In FFY2024, the BFH Genetics program will continue working to reduce the time between a presumptive positive heel stick screen and referral to specialist for final diagnosis. BFH has implemented QI processes with the state laboratory and hospitals to identify exactly where delays are occurring between sample collection, processing, reporting, and referral. As sources of the delays are identified, BFH will work with the involved entities to implement customized process improvements. This targeted approach is designed to increase overall program efficiency and direct resources towards improvement-focused activities.

 

The Joint Committee on Infant Hearing’s Principles and Guidelines for Early Hearing Detection and Intervention Programs outlines benchmarks related to timely identification of infants who are D/HH. These benchmarks address screening by 1 month of age, diagnosis by 3 months of age, and enrollment in early intervention by 6 months of age.  EHDI will strive to maintain at least a 99% screening rate. This can be defined as the number of infants that completed a newborn hearing screen prior to hospital discharge or no later than 1 month of age, among the total number eligible for screen. Data for infants born between January 1, 2022 and December 31, 2022, reflects a screening rate of 99.25%, which is higher than the benchmark average of 98%. Activities to maintain this measure will continue to include closely monitoring timely data reporting at each birthing hospital. Newborn hearing screening hospital supervisors are encouraged to use the LA EHDI-Information System (LA EHDI-IS) to identify infants with unreported newborn hearing screening status. Additionally, the LA EHDI data coordinator provides monthly lists of those infants to the hospital newborn hearing screening supervisor and nursery supervisor with a request to enter the missing data. The data coordinator reviews the data to identify any infants’ records still missing information, and follows up with hospitals as needed. In addition to monitoring the completeness of hearing screening data, quarterly quality reviews are conducted. LA EHDI-IS provides the ability to generate a report of infants likely to have inaccurate newborn hearing screening results entered in LA EHDI-IS. The report lists all infants who passed their newborn hearing screen, had no risk factors for permanent hearing loss, but received outpatient follow-up within 3 months. The data coordinator contacts the birth hospitals, requesting verification of the newborn hearing screening results. Once verified, inaccurate results are corrected at the hospital level in the Louisiana Electronic Event Registration System (LEERS). These data quality reviews allow LA EHDI to identify data entry errors and request corrections when needed. For children born in 2022 and diagnosed with permanent hearing loss, 71.7% of children who did not pass the initial newborn hearing screening received a diagnosis by 3 months of age, representing an improvement of 7.27% over the 2017 baseline value of 66.84%, just shy of the targeted 10% over baseline. Enrollment in early intervention by 6 months of age continues to be watched closely by the LA EHDI team, as a growing trend of families declining referral to and enrollment in early intervention following their child’s diagnosis as D/HH has been observed. Specifically, in the 2021 cohort, 86% of children identified enrolled in early intervention, but only 57% enrolled by the age of 6 months. In 2022, 75% of children identified enrolled in early intervention, of which only 63% were enrolled by 6 months of age. The LA EHDI team, with guidance from the Statewide Advisory Council Language Development committee, has outlined several change strategies which include continued: 1) documentation of the reason each family declines a referral to early intervention, 2) provision of additional support to families of children with unilateral hearing loss through the initial Individualized Family Service Plan (IFSP), 3) notification of each child’s audiologist and primary care provider when a family declines early intervention, 4) collection and development of materials that focus on the importance of language development, 5) sharing of early intervention materials with families and discussing the importance of early intervention by audiologists, 6) presenting information on the importance of discussing language development and early intervention with families to audiologists, and 7) continued education on the importance of language development the EHDI Hot Topics newsletter for audiologists statewide. Additionally, a PDSA was conducted to: 1) decrease the time between referral to PPEP (non-Part C intervention) and initial family contact, 2) increase collaborative efforts between PPEP and EarlySteps (Part C), and 3) ensure that PPEP teachers were invited to the IFSP meetings. Results of the initial PDSA cycle are positive, therefore LA EHDI will continue monitoring and intervening as necessary in the coming year.

 

Louisiana Birth Defects Monitoring Network (LBDMN): Title V will continue to support the work of the LBDMN in FFY2024. Building on the progress made in FFY2022 to provide timely information and intervention to families (including support to access resources and services), the LBDMN team will apply the new methods to ensure provision of timely intervention for families in FFY2024.  Among all children born in 2023, those identified by the monitoring network are scheduled to be contacted in September 2023.This timing is critical to connect children to early intervention services within the first year of life to improve health and developmental outcomes as well as the quality of life for those impacted by birth defects. In FFY2024, the LBDMN team will aim to achieve the following quality standards:

• Completing cases within 60 days of identification
• FRC processing cases within 90 days of a child being placed on the registry
• Expanding referrals to include children who could benefit from referral services, but who do not meet LBDMN case definition for inclusion in the registry and children with developmental and medical involvement due to a birth defect or medical condition outside of the National Birth Defects Prevention Network standards for reporting (e.g., those with global developmental involvement due to extreme prematurity, but no structural or genetic birth defects).
• Developing FRC protocols for contacting families while infants are still in the neonatal intensive care unit (NICU) through partnerships with hospital social workers or registered nurse (RN) case managers.  Initial contacts for introduction and availability of referral services post discharge along with a tracking mechanism for follow-up.

Implementation of this strategy will be measured by ESM 11.1: Number of healthcare providers trained on Medical Home, Care Coordination and Youth Health Transition.