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. The national medical home (MH) 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 MH are critical to ensure that CYSHCN minimize their disabilities and maximize their independence. As a state, 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 MH.1

 

CYSHCN priority needs and performance measures

Priority needs:

The 2020 Needs Assessment priority ranking process underscored the importance of ensuring access to specialty 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:

• Ensure equitable access to quality, coordinated care and supportive services
• Partner with families, youth, and communities at all levels of systems change

 

Performance measures:

Throughout the FFY 2021-2025 strategic period, Title V investments in the CYSHCN population domain in Louisiana will contribute to improvement of the following outcomes at both state and national levels:

• Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (National Outcome Measure (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 delivered strategies to improve the following performance measure(s):

• Percent of children with and without special health care needs, ages 0 through 17, who have a medical home (National Performance Measure (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 FFY2022, LA Title V aimed to achieve the following objective(s) in relation to the CYSHCN population domain:

• By March 2022, complete second phase of pediatric subspecialty landscape assessment
• Annually identify one area of the state underserved by the Early Hearing Detection and Intervention (EHDI) system and develop a plan for improvement
• By December 2022, co-create a continuous collaboration forum to support alignment and synergy among Title V-supported programs and initiatives working to ensure a well-functioning system of care for CYSHCN and their families
• By October 2022, implement Change Package Checklist with all partner Families Helping Families (FHF) organizations
• By September 2023, develop and implement a statewide plan for active outreach, communication, and promotion of the existing Family Resource Center (FRC) resource and referral services to ensure awareness and encourage more active use of existing services by families and providers
• By September 2022, implement pilot with FRC to facilitate timely, meaningful referrals to care for families of children identified as having a birth defect
• Conduct at least 10 regional Resource Information Workshops (RIWs) annually via partnership with FHF organizations
• By December 2022, pilot, evaluate, and disseminate a Louisiana Youth Health Transition (YHT) toolkit

 

 

Summary of Title V supported interventions for CYSHCN in FFY2022

 

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

Expand Title V CYSHCN reach by shifting direct service resources to population services: One of the most significant areas of transformation within Louisiana’s Title V program during the FFY 2021-2025 cycle will be within the CYSHCN domain. Historically, a majority of Louisiana Title V investment in the CYSHCN domain has been focused on the condition-specific population eligible for services through Children's Special Health Services (CSHS) and the Genetics Diseases program. Title V has also maintained smaller investments in various care coordination (CC), parent support, and resource linkage activities. The 2020 Needs Assessment demonstrated that BFH has been effective in providing direct and enabling services through these programs and activities, but Title V is reaching only a small percentage of the CYSHCN population in Louisiana. Therefore, the priority needs focus on assuring a well-functioning, family centered, community-based system of care for all CYSHCN, including but not limited to those with complex needs served through Title V-sponsored direct service clinics. Addressing this new priority demands a shift of Title V investments and efforts “down the maternal and child health (MCH) pyramid” towards more population-level strategies.

 

Conduct pediatric subspecialty provider access landscape assessments for each region: Between FFY2020 and FFY2022, BFH completed a two-phase landscape assessment survey collecting data from the local providers throughout all nine administrative regions of Louisiana.  The assessment was designed based on the following guiding research questions:

• Are there patient-provider access gaps in Louisiana for children with complex medical needs?
  • Is there sufficient access to the providers that serve this population?
  • What is the current need for these providers?
• How should accessible care in Louisiana look when compared to CSHS and industry standards?

 

The first phase of the assessment focused on defining an ideal vision of the health system and accessible patient care in order to measure how BFH clinic practices and the system they are situated within compare to national and industry standards. This process included an in-depth review of the various industry standards that relate to care provision for children with complex medical needs. These standards were compared with the care standards of the BFH CSHS sub-specialty clinics.

 

The second phase of the assessment focused on measuring patient access to care by identifying the population need for pediatric sub-specialty services and assessing PHU and private providers’ ability to meet the identified need. To better understand where children in need of accessible pediatric subspecialty care live throughout the state, BFH epidemiologists conducted population geo-mapping based on Pediatric Medical Complexity Algorithm and Medicaid claims data. To capture the true accessibility of the subspecialty providers in each region, BFH worked with the regional FHF organizations to contact all specialty providers in each region to collect information for the assessment.

The data collected from both phases of the survey were merged and analyzed by BFH teams. The landscape assessment focused on locating pediatric providers that accepted Medicaid patients and had available appointments within the next two months. Of the 1,615 Louisiana providers contacted, 1,112 completed the survey and 394 met the criteria stated above. The findings showed the distribution of providers by specialty in each region and their availability to serve patients covered by Medicaid. Additionally, the analysis gave a clearer picture of the geographic areas where residents had inadequate access to specific specialties. For example, according to the landscape assessment findings, only one provider specializing in genetic diseases was available to accept new Medicaid patients. Further analysis will be conducted to inform evidence-based operational changes to improve the sustainability of services and the overall efficiency in using current resources.

 

Conduct targeted ongoing needs assessment activities and research projects to identify gaps and opportunities for improvement within the state systems of care for CYSHCN: Identify areas of Louisiana underserved by the EHDI system: The Louisiana EHDI program supports coordinated systems of care that ensure families of babies and children who are deaf or hard-of-hearing (D/HH) receive appropriate and timely services. These services include hearing screening, diagnosis, early intervention (EI) and family to family support. EHDI follows the Joint Committee on Infant Hearing's (JCIH) Principles and Guidelines for Early Hearing Detection and Intervention Programs and national 1-3-6 benchmarks for hearing screening no later than 1 month of age, diagnosis no later than 3 months of age for infants who did not pass the screening, and enrollment in early intervention services no later than 6 months of age for those identified as D/HH. Hearing screening is the first step in finding out if a child is D/HH. Louisiana law mandates that all babies are screened prior to hospital discharge. It is important to identify a baby's hearing level as early as possible so families can learn how best to support and communicate with their child. Enrollment in EI as soon as possible plays an important part in helping children who are D/HH reach their full potential. Louisiana’s progress on the EDHI 1-3-6 goals for children born in 2022 shows that 99.25% of babies were screened by 1 month of age (benchmark is 98%), and that among children diagnosed with permanent 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). Seventy-eight percent of babies enrolled in early intervention overall, but only 42% of those were by 6 months of age. LA EHDI is in the process of refining a plan to expand data collection and reporting for children up to 3 years of age.

 

Geomapping was conducted to evaluate the impact of geographic location on babies in the EHDI system. Upon internal review of the geo maps and follow-up data, the northwest area of the state was identified as underserved by the EHDI system and a committee was convened to focus on improving access to timely services from community-based providers. The committee has since transitioned to a regularly held meeting with community audiologists to ensure timely services for children who need them.

 

Additionally in FFY2022, EHDI regional collaboratives were held in six of the 9 LDH regions. Each collaborative brought together EHDI regional stakeholders to review region-specific data related to EHDI’s 1-3-6 goals and identify strategies to increase the number of children connected to community-based services for audiological testing and EI.

 

Information about late-onset childhood hearing loss has been incorporated into all EHDI stakeholder presentations. Stakeholders are encouraged to ensure audiological testing for any child with a speech/language delay, and any child with risk factors for delayed onset or progressive hearing loss. The incidence of late-onset childhood hearing loss and the importance of early childhood hearing screenings are also covered. The EDHI team developed and distributed a flyer: Your Baby Needs Another Hearing Test by 9 Months of Age-What Families Need to Know to hospitals as a resource for families with infants who passed newborn hearing screening but had risk factors for late-onset hearing loss. The flyer explains why audiological testing by 9 months of age is important, and next steps.

 

The EHDI team developed a partnership with the Louisiana State University Health Sciences Center (LSUHSC) and the nurse health specialist for the Early Head Start (EHS) Child Care Partnership to obtain screening results for children lost to follow-up after newborn hearing screening, as well as children who were never screened. The team met with the LSUHSC director of early childhood initiatives, who shared hearing screening procedures and protocols for EHS centers and connected the team with the director of the Louisiana Head Start (HS) State Collaboration Office. The HS director shared a directory of all EHS centers in Louisiana. The EDHI team conducted a survey of each center to learn more about which personnel perform hearing screenings, follow-up protocols for children who did not pass their screenings, and where children are referred when audiological testing is required. Moving forward, the team will focus on building connections between centers and pediatric audiologists.

 

Finally, the EHDI team presented two sessions at the Powering Up Early Childhood Conference titled: “Why is Early Childhood Hearing Screening Important?” in July 2022 to EHS and HS staff, as well as other early childhood providers.

 

Facilitate alignment and meaningful collaboration among all Title V supported programs and initiatives working to ensure a well-functioning system of care for CYSHCN and their families: Historically, Louisiana Title V invested in myriad parent support, CC, and resource linkage activities with variable scope and reach. While some of these activities were linked to the CSHS PHU clinic services, many CC services were delivered as part of other BFH programs and various contracts with external specialty clinics, academic medical homes, and resource centers. To align these various CC activities across the bureau, BFH established a CC special projects position and workgroup just prior to the onset of the pandemic.

 

In FFY2022, the CC consultant focused on advancement and implementation of strategies to leverage BFH’s investments in and institutional knowledge of CC to enhance the overall system of care for CYSHCN. Aligning CC activities across BFH has been a particular focus throughout this 5-year Block Grant cycle. Following an in-depth review of CC definitions, BFH determined to fully adopt the National Care Coordination Standards (2020) definition to frame BFH CC activities: “Pediatric care coordination is a family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families. Care coordination addresses interrelated medical, oral, social, developmental, behavioral, educational, and financial needs in order to achieve optimal health and wellness outcomes.”

 

The CC consultant, with collaborative support from BFH teams, worked to further define Levels of Care (LOC) based on current research and earlier Title V field research. Once refined, BFH adopted the CC LOC definitions in order to facilitate standardization of Title V pediatric CC services, investments, policy advocacy and system accountability efforts.  LOC definitions are essential to this work, since variable CC terminology across industries and sectors creates barriers to data aggregation and comparison between programs and organizations. Louisiana Title V has defined the levels as follows:

• Level 1: Light touch, time-limited (single or periodic contact), phone-email-text, follow-up with family consent only, may refer to high touch/Level 3 care coordination (Ex. Resource/referral services, links or directs to a community program, resource, or specific service)
• Level 2: Medium touch, in-person or telephonic (email/text), may be time bound, may be condition-specific (Ex. EarlySteps support coordination, home visiting, waiver support coordinator, practice-based navigator, Resource Center universal care coordinator, community health worker)
• Level 3: High touch, in-person and telephonic, long-term, comprehensive coordination of care (assigned, designated practice-based care coordinator, and/or payor sponsored case manager and has access to the patient health record, services may be time-limited or targeted based on the service provider).

 

Alongside the work to standardize CC definition, the CC consultant, supported by the Health systems strategy manager and the CYSHCN epidemiologist, also worked to identify and define types of CYSHCN. Historically, Title V operated from the MCHB CYSHCN definition. However, after thorough study of CYSHCN population definitions, BFH adopted the following definitions to clarify and guide work related to CYSHCN in Louisiana:

• Children with Special Health Care Needs (CSHCN) are those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally.2
• Children with Medical Complexity (CMC) are those children “clinically recognized by at least 1 chronic condition resulting in high family-identified service need, medical equipment addressing functional difficulties, multiple subspecialist involvement, and elevated health service use.”3
• Children with Social Complexity (CSC): “a set of co-occurring individual, family or community characteristics that have a direct impact on health outcomes or an indirect impact by affecting a child’s access to care and/or a family’s ability to engage in recommended medical and mental health treatments.”4

 

In FFY2022, the CC consultant led the update and expansion of the BFH CC Matrix and collaboratively identified strategies to align BFH CC activities around the consensus CC and CYSHCN population definitions. The CC consultant conducted key informant interviews with BFH teams that included a level-setting discussion on CC and CYSHCN population definitions and collected input to inform/refine the CC LOC definitions. These meetings also provided an opportunity to update teams on available CC resources, including provider toolkits and Regional Resource Guides.

 

Additional CC strategy work included an environmental scan of state CC models, continued exploration of funding structures for CC services, and finalization of the working draft of the CC/Case Management Role document that used a classification of needs framework to map CC roles to responsible entities (MCO, Medicaid, Public Health Policy, Public Health Provisional Support, Direct Service/Health Provider). In addition to role identification, a swim lane diagram was used to illuminate linkages between responsible entities and advance discussions with Medicaid partners around potential CC collaborations and opportunities to align efforts.

 

The FFY2022 CC strategy efforts highlighted the need to redevelop the 2014 CC toolkit that was originally published to support dissemination of early Title V CC research and facilitate integration of CC best-practices in outpatient clinical settings. The team launched this work with a comprehensive review of the 2020 National Care Coordination Standards for Children and Youth with Special Health Care Needs and a literature review to ensure the revised provider toolkit would be consistent with current evidence and recommendations for CC services. Furthermore, the team prepared for the e-toolkit to be organized around the quality improvement (QI) framework that guided redevelopment of the BFH YHT and DS toolkits. The CC toolkit was ultimately completed and published online in April 2023.

 

 

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

Assist the regional FHF centers with implementation, capacity building, and continuous quality improvement related to building a coordinated resource and referral network: Over FFY2022, BFH continued to expand its partnership with 10 regional FHF organizations. Prior to COVID-19, Title V had contractual staffing partnerships with these organizations for personnel who provided peer support to CYSHCN and families served in the OPH PHU safety net clinics and the FRC when it was located at Children’s Hospital in New Orleans (CHNO). Over the course of the pandemic, BFH began working with the FHF organizations to expand the reach of family support beyond the PHUs and CHNO clinic population. In contrast to the previous contracts which provided support for a particular role, the new deliverable-based contracts aimed to increase the overall organizational capacity of local FHF organizations to effectively serve all CYSHCN in their region. This change also expanded the reach of the FHF organizations beyond their historic focus on the subset of CYSHCN with developmental disabilities. The contract deliverables were designed to build FHF organizations’ knowledge about the CYSHCN populations residing in their communities, including their conditions, needs and challenges; to build understanding of the the healthcare service system strengths and gaps in their regions; and to build BFH’s capacity to engage and partner with community families within public health projects. The contract deliverables focused on activities that promoted FHF services to healthcare providers serving CYSHCN. Additionally, the BFH-FHF collaboration aimed to increase FHF agency and workforce readiness to potentially integrate their family support activities into future healthcare systems and service payment models.

 

During FFY2022, BFH provided the FHF networks with coaching and TA around implementation of contract deliverables. This process allowed the BFH family consultant and statewide nurse consultant to build relationships with each of the ten FHF centers. To assist the FHF centers with implementation, capacity building, and continuous quality improvement related to creating a coordinated resource and referral network, the BFH family consultant and statewide nurse consultant developed a Change Package Checklist tool. This Change Package Checklist was updated during FFY2022 and remains a resource to support the FHF-BFH project and to orient new staff to the work. FHF have served as thought partners and key informants around best practices for family engagement and this shared expertise has supported capacity building of BFH staff.  

 

In addition to activities related to understanding and reaching the broader CYSHCN populations in their respective regions, the FFY2022 FHF-BFH work plan included the annual Regional Information Workshops (RIWs). Eight two-hour educational workshops were hosted by FHF-BFH collaboratively, reaching over 475 providers statewide. Each RIW offered continuing education credits (CEs) for nurses and social workers and designed to build workforce competency around essential CYSHCN services and supports.

 

As noted in last year’s Block Grant application, BFH and FHF networks were impacted by a terrible loss in April 2022: BFH family consultant, Cathy Dove, passed away following a short but courageous battle with cancer. Cathy worked with Title V programs for over 20 years, starting her career as a parent liaison supporting families that attended CSHS Pediatric Specialty Clinics. She later took the position as the CSHS statewide parent training coordinator and trained parent liaisons. When CSHS moved under the BFH, Cathy served as the first BFH statewide family consultant and was assigned the role of project liaison for the BFH-FHF initiative. Cathy was an amazing leader and passionate advocate for families and continues to be missed by her FHF and BFH colleagues. Due to Cathy’s effective coaching and support to the regional FHF organizations, the FHF-BFH project is now in its third successful year.

 

Enhance partnerships with family and community-led organizations to increase population reach and support services for CYSHCN and families: In addition to the FHF centers, BFH also has long-standing partnerships with other community-based service organizations that provide individual support and resources to specific CYSHCN populations, including individuals living with Sickle Cell Disease (SCD), individuals who are d/Deaf and hard-of-hearing, and their respective families. 

 

Sickle Cell Foundations are independent, nonprofit community based organizations that provide care coordination and supportive services free of charge to individuals living with sickle cell disease and their families. Families identified through newborn screening are referred to these regional support organizations. In FFY2022, BFH continued to provide funding and technical assistance to these centers for their work to support children and families in Louisiana.

 

LA EHDI works closely with Louisiana Hands & Voices (H&V), a statewide parent-driven organization that supports families of children who are D/HH. An extension of the H&V program is the Guide By Your Side program (GBYS), which features parent guides (parents of children who are diagnosed 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).The LA EHDI team implemented new processes and strategies to increase collaboration and teamwork with H&V. In FFY2022, the EHDI and H&V teams revised performance expectations in an effort to identify strengths, weaknesses, and training opportunities. A self-assessment checklist was completed by each guide.

 

Optimize effectiveness of boards and commissions serving CYSHCN populations:

Early Identification of Deaf and Hard of Hearing Infants Advisory Council:  In FFY2022, a workgroup was tasked with reviewing the existing statute regulating the formation and functioning of the Council. The workgroup recommended the following updates to the statute:

• program purpose and definitions should be updated to reflect more inclusive language and guidance from the Joint Committee of Infant Hearing (JCIH)
• reporting requirement for all providers of outpatient audiological testing
• Council membership should be updated to include an early intervention stakeholder

 

Two legislative leads from BFH assisted the Council throughout the process, but ultimately the recommended changes were not picked up during the legislative session.

 

Sickle Cell Commission: The mandate of the Louisiana Sickle Cell Commission (LSCC) is to improve the delivery of sickle cell services in Louisiana. Under the guidelines established in RS 40:1125.1, the charges of the LSCC are:

1. Ensure the delivery of sickle cell services to affected persons in all parishes in Louisiana and assist in establishing geographical service delivery boundaries.
2. Promulgate guidelines for creating uniformity in the delivery of services and the management of statewide programs.Requests the Department of Health to provide for equitable access to transformative therapies for sickle cell disease.
3. Submit budget recommendations to the Legislature and the governor.
4. Prepare and publish an annual report on sickle cell with these details:
   1. An assessment of the programs and activities aimed at sickle cell.
   2. A description of the level of coordination existing between the state and private stakeholders in the management and treatment of sickle cell.
   3. The development of a detailed action plan for battling sickle cell

 

During FFY2022, BFH implemented Act 647 of the 2022 state regular legislative sessions. This act was generated through the advocacy of the LSCC and required the establishment of a sickle cell registry. BFH began the process of determining what information should be included into the registry and from which sources data should be obtained.

 

Rare Disease Advisory Council: The Louisiana Rare Disease Advisory Council (LA RDAC) is mandated to serve in a resource capacity for any public and private agency in Louisiana that provides services for a person who has been diagnosed with a rare disease. The RDAC was established under RS 40:1122.1.  The primary charges of the RDAC are to:

1. provide input and feedback to the department and any other state agency on matters that affect a person who has been diagnosed with a rare disease,
2. provide expert and clinical advice to the board in its review of treatments for a rare disease, including drug or biologic product  treatments emerging from fields of personalized medicine and non-inheritable gene editing therapeutics, and
3. provide a report to the governor, the Legislature of Louisiana, LDH, and any other relevant agency on any findings, activities, and progress of the advisory council and any recommendations for addressing the needs of a person living with a rare disease in this state.

 

During FFY2022, BFH worked with the Louisiana Boards and Commissions Office to seat the required membership in the law and began holding quarterly meetings to discuss bylaws, committees, reports, etc. 

 

Louisiana Birth Defects Monitoring Network (LBDMN) Advisory Council: The LBDMN Advisory Board is a group of volunteer stakeholders appointed by the LDH Secretary to guide the birth defects surveillance system as specified by law and administrative rule. The mission of the Advisory Board is to collect, analyze, and disseminate high quality, timely, actionable data to inform policy and systems-change to eliminate preventable birth defects, mitigate disability, and connect families with resources to improve their quality of life. The advisory board consists of nine members representing maternal fetal medicine, pediatrics, genetics, epidemiology, parents of children with birth defects, and persons with birth defects. Along with other OPH partners, these subject matter experts provide expertise and perspective to guide LBDMN staff in surveillance operations, referral to resources initiatives, and birth defects prevention strategies.

 

In FFY2022, the focus of the LBDMN Advisory Board shifted from surveillance system organization and implementation to informing recommendations for strategies to improve Louisiana’s MCH system. Title V supported LBDMN data collection specialists collect birth defects data and the LBDMN epidemiologist conducts analysis and reporting of data. Data and recommendations are reported to the CDC, the National Birth Defects Prevention Network, the Louisiana Legislature, and the Environmental Public Health Tracking Network. Complete findings are in the LBDMN 2022 Annual Report to the legislature.

 

 

System Priority: Ensure equitable access to high-quality and coordinated clinical and support services

Support the development and expansion of FRC services as a virtual, statewide, resource and referral hub resource hub: Currently the FRC functions as a statewide resource staffed by a small number of resource specialists families can contact directly by phone or email.  The FRC resource specialists assist families with identifying and enrolling in or requesting support services. They also provide families with guidance on how to best navigate the insurance, health, early intervention and school systems. The ideal user experience for families is that they are able to contact the FRC, complete a brief inventory of needs, and leave the interaction having identified, understood, and connected with the resources and referrals that are most relevant and useful to them. Needs are always prioritized based on the families’ stated preferences. If the family provides their contact information, the resource specialist conducts follow-up to ensure the family’s needs are met. Alternatively, clinicians can email the FRC directly to provide information on referral needs of families assessed during a clinic visit.  The resource specialist will either respond directly to the provider or connect directly with the family based on the providers’ referral request. The FRC in its current structure is a valuable resource to the providers and families that routinely use it.

 

Throughout FFY2022, BFH trained FRC staff to deliver services virtually and by phone, expanded their statewide resource database, tested reporting templates to enable QI measurement, created a QR code to provide easy access to the menu of FRC services/contact information, and created a series of briefs outlining new resources to disseminate to staff, partners as well as families served by OPH PHU clinic.

 

While BFH laid significant groundwork to move the FRC expansion forward, FFY2022 activities concentrated on FRC coordination and alignment strategies within and across Bureau projects to ensure the resource effectively supported families already touching Bureau programs. These alignment initiatives included meetings with team leads, developing family support strategies, establishing communication channels between the FRC and field staff, developing resources for providers and families, and testing and refining proposed alignment strategies. Alignment efforts continued into FFY2023 and once sustainable workflows are established, the FRC will develop a strategic communication plan to support staged growth of the resource, as well as to ensure equitable access across all communities in the state. 

 

Improve timely linkage to care in screening and surveillance systems:

Newborn genetics screening and follow-up: The Genetic Diseases program ensures that all infants who screen presumptive positive for a genetic condition on the newborn screening panel receive timely and appropriate follow-up, and that these children are monitored until a diagnosis is confirmed. In FFY2022, 100% of newborns with positive screens received timely follow up to definitive diagnosis and clinical management. In FFY2022, BFH promulgated rules to update the panel to include Spinal Muscular Atrophy, Mucopolysaccharidosis type I, and Glycogen Storage Disease Type II. To facilitate early detection and initiation into specialized care, Title V continued to support contracts with medical geneticists, endocrinologists, hematologists, and pulmonologists to conduct specialty clinics around the state.                  

 

Louisiana Birth Defects Monitoring Network (LBDMN): In FY2022, Louisiana Title V continued to fund the LBDMN, the program responsible for surveillance of birth defects in Louisiana's children. Monitoring the health status of newborns provides population-based data to help inform policies, educate the public, support efforts of community partners, and improve health outcomes by connecting families to resources. LBDMN evaluates concerns about unexpected groups of birth defects as well as the effectiveness of preventive interventions. Regionally assigned data collection specialists (DCS) evaluate patient discharge information of children (age 0-3) from all birthing hospitals in Louisiana, as well as at New Orleans Children’s Hospital, Tulane University Medical Center, and Our Lady of the Lake Children’s Hospital. LBDMN maintains a private and confidential database of children affected by congenital structural, functional, and/or genetic birth defects. De-identified medical record data are analyzed statistically for patterns and trends over time, and shared with researchers from the CDC, universities, and other states investigating possible causes of specific birth defects.

 

LBDMN data informs one-on-one needs assessments with families of children with birth defects (ages 0-3) who may benefit from assistance identifying appropriate medical, educational, public health, and peer support resources. LBDMN data are also used to provide preventive education to the public regarding birth defects and to inform policy makers about environmental risk factors and other causes potentially linked to specific birth conditions.

 

In FFY2022, LBDMN enjoyed efficiencies resulting from strategic operational changes in FFY2020-21. From October 2021 to September 2022, LBDMN processed data across three birth years (2018-2020), which resulted in the identification of 3,506 children with qualifying birth defects. The National Birth Defects Prevention Network (NBDPN) sets and assesses national data quality standards for population-based birth defects surveillance programs in the US, using eleven data quality measures to assess for data completeness, timeliness, and accuracy. Programs may achieve three performance levels: 1- Rudimentary, 2- Essential, or 3- Optimal. In 2022, LBDMN achieved an overall score of 2.7, slightly higher than the national average.  LBDMN scores for each category were as follows: Completeness = 2.6; Timeliness = 2.5; Accuracy = 2.7. Louisiana’s timeliness score has improved significantly since the first assessment in 2015 when the state scored a zero. This improvement has allowed the program to identify and proactively refer 929 children born in 2020-2021 to the new central virtual FRC during FFY2022.

 

The most recent findings from LBDMN’s active surveillance of birth defects in children born in Louisiana were published in the LBDMN 2022 Annual Report to the legislature.

 

Collaborate with Medicaid and the State Laboratory to develop policy, operational, and funding mechanisms to support universal newborn screening for all conditions recommended by the U.S. Secretary of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders on Newborns and Children: The Genetic Diseases program met with the State Laboratory and Medicaid to assess the resources and time required to add a new condition to the respective systems for each entity. Deliberation with Medicaid included discussions regarding potential reimbursement for a new test, as well as the cost of adding a new test and the timeframe required to add a new condition to their budget. The State Laboratory was assessed to determine if any new equipment would be required, if any new staff would need to be hired for new conditions, and, if so, what would be a reasonable timeframe to implement new testing. Likewise, the Genetic Diseases program was assessed to determine if any new staffing was required for follow-up and if any new contracts would be needed for referrals to a specialty provider.[1]

 

In alignment with national standards, optimize efficiency and quality of services delivered through BFH CSHS and Genetics safety-net clinics:

CSHS and Genetic Diseases program evaluations: Historical CYSHCN services have focused on provision of gap filling services through the OPH parish health units (PHU). Over the past two years, Title V has conducted several formal evaluations and systematic assessments of these services and their reach. The results from these activities have illuminated opportunities to strengthen the alignment of core public health screening and diagnostic systems with shared definitions and standards, in particular for CC, and the beginning of a new vision for how Title V works to strengthen the systems of care and support for CYSHCN.

 

The BFH CSHS and Genetic Diseases programs based their program evaluations on the Institute for Healthcare Improvement (IHI) Triple Aim Quality Framework, which aims to: 1) improve the patient experience of care (including quality and satisfaction); 2) improve the health of populations (good outcomes); and 3) reduce the per capita cost of health care. Both evaluations were guided by the question: What processes are in place that assure that BFH CYSHCN clinical programs are providing the highest quality services to all the intended population, according to the statutory requirements and the Triple Aim Quality Framework?  Programmatic evaluations were completed in FFY2021. In FFY 2022, the CSHS and Genetics programs developed and implemented comprehensive work plans to address evaluation recommendations. 

 

Support development of statewide mental health consultation system: In FY2022, BFH expanded efforts to develop a statewide mental health consultation system to build the capacity of frontline healthcare providers to effectively address the mental health needs of their patients.  In 2018, BFH received a five-year Maternal Depression and Related Behavioral Health Disorders grant from HRSA to implement the Louisiana Mental Health Perinatal Partnership (LAMHPP) which supports the early recognition and response to potential mental health concerns among pregnant and postpartum patients in Louisiana by giving providers access to phone consultation with licensed mental health professionals and psychiatrists; trainings and online resources related to perinatal depression, anxiety, substance use disorders, interpersonal violence, and related health risks; and resource and referral support. Consultations focus on promoting screening for mental health concerns, first line management of mental health and substance use disorders, and making effective referrals to additional community resources. In FFY2022, BFH worked with the partners at Tulane to increase its in-person outreach to providers statewide and to implement new QI processes and a data dashboard to enhance the quality and reporting of the data collected during consultations. FFY2022 was also the first year of a five-year Pediatric and Mental Health Care Access grant that BFH was awarded by HRSA to develop a program that offers services similar to those that are offered by LAMHPP, but with the population of focus being pediatric providers. By the end of FFY2022, BFH had the infrastructure in place to launch the Provider-to-Provider Consultation Line (PPCL) for pediatric providers. In addition, the decision was made to begin moving LAMHPP under the PPCL umbrella and the day-to-day oversight of the Bureau, thus creating a mental health consultation and training program that provides support and guidance to both perinatal and pediatric providers.

 

Support development of future and existing CYSHCN workforce by providing training to health care providers on care coordination, youth health transition, and medical home:

During FFY2022, BFH supported a number of education activities that targeted healthcare practitioners and trainees. These education activities aimed to ensure clinicians have the knowledge, tools, and experience to promote and provide CC and make appropriate community referrals in their personal practices.

 

In collaboration with LSU New Orleans pediatric residency program, BFH supported enhanced MH/CC training for resident physicians as a component of their Developmental Pediatrics rotation. During the month-long rotation, residents work exclusively with CYSHCN experiencing varied developmental delays. Monthly, the BFH statewide CSHS RN program consultant, supported by the CC specialist, provides MH didactics to residents on rotation. The didactic content includes content on the MH delivery model, CC, YHT,  the County Health Rankings Health Outcomes Model, the Medicaid Early, Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, the LDH Office of Citizens with Developmental Disabilities programs, the role of peer support, and key community programs that provide essential support services for CYSHCN. Residents are provided a MH resource packet that includes the CSHS Regional Resource Guides, DS Resource Guides, and a Community Referral info sheet along with links to BFH pediatric provider toolkits. Rotation wrap-up includes a resident case presentation through the lens of care provision in a high quality MH, facilitated by the nurse consultant and the CC specialist. Following each presentation, the CC specialist facilitates a case debrief. Over the course of FFY2022, 24 residents completed MH didactics.   

During FY2022, BFH also hired a MH/EPDST coordinator to support expansion of NPM 11, with an aim to build workforce capacity and integration of MH competencies into providers-in-training coursework. Since hire, the MH coordinator worked to develop and operationalize a work plan grounded in Title V’s historical work with LSU and Tulane University residency programs, the Council for Graduate Medical Education requirements for pediatric residency programs, and Title V MH/CC field research. The MH didactic expansion planning effort also utilized feedback from former resident participants and American Academy of Pediatrics (AAP) MH training modules to inform and refine a menu of didactic offerings. Additionally, the MH coordinator focused on building strategies to engage all pediatric primary care provider types so that the gold standard of pediatric care (care in a MH) is effectively delivered through the entire healthcare system (nurse practitioners, physician assistants, pediatrician and family medicine residents). This work aims to directly impact the number of all children receiving care in a high quality MH that includes the benefits of DS, CC, and YHT services.  

 

Sponsorship of care coordinators: During FFY2022, Title V continued to sponsor care coordinators in four academic clinics[2]. While direct service CC investments provide pediatric and family medicine residents and medical students the opportunity to train in a MH setting, this strategy has limitations. Sponsorship of masters-level professionals with specialized expertise with CYSHCN populations prohibits scale and spread of these services, thereby limiting access to a very small percentage of the CYSHCN in the state. Rather than continuing to sponsor the full salary of a small number of care coordinators in a limited number of practices, BFH has focused on unifying definitions of and standards for CC, developing of resources and tools (e.g.,CC and MH toolkits), promoting standards and tools to practitioners and trainees, and developing a universally available CC resource through a virtual statewide Family Resource Center (FRC).

 

Promotion of care coordination referral resources: Additional strategies in FFY2022 to build MH and CC capacity among existing and emerging health care providers focused on ensuring that clinicians have the tools and resources to deliver quality CC services to their patients. A key element of CC is effective referrals to community resources. To support effective referrals, Title V maintained and promoted region-specific resource guides which include basic service information, eligibility criteria, and contact information for the most frequently used pediatric and adolescent community supports and mental health services. Management of the CSHS Regional Resource Guides (RRG) included the annual content check to ensure information remains current. Inter-periodic edits occur when state program changes are announced. These RRGs were disseminated at CSHS sponsored workshops/presentations, provider conferences, and are available for download from the CSHS landing page on the LDH and Partners for Family Health websites.

 

Pilot, evaluate, and disseminate a Louisiana YHT toolkit to support medical homes around youth transition services

To further support MHs in the state, specifically around YHT services, Title V developed and published a Louisiana YHT toolkit based on clinical practice guidelines, Got Transitions: Six Core Elements of Transition, and lessons learned from field experts. Using a QI framework, the toolkit provides a systematic approach for implementing and improving evidence-based transition services in primary or specialty care settings. In FFY2022, BFH facilitated two successful practice-based pilots of the YHT toolkit. In the first pilot, the OPH PHU CSHS clinics revised and published a YHT policy and implemented the YHT Readiness Checklist. All youth served through these clinics completed a readiness assessment as part of their clinical experience throughout adolescence. In the second pilot, a CC partner clinic implemented the toolkit in three pediatric sites. The clinics adapted the YHT Readiness Checklist and established a YHT text line monitored by the clinic CC. These activities were supported by modifications to the electronic medical records and clinic protocols. While the toolkit is only currently available as PDF, BFH plans to develop a web-based version in FFY2024, modeled after Louisiana’s web-based DS and CC toolkits.

 

CSHS and Genetics clinical quality improvement: To guide QI efforts in FY2022, CSHS staff developed a clinical services QI plan and corresponding quality assurance performance measures based upon nationally recognized standards including the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, National Care Coordination Standards for Children and Youth with Special Health Care Needs, and Got Transition: Six Core Elements. The quality assurance measures track performance in relation to the following areas:

• Measure 1. Eligibility and Enrollment in Health Coverage
  • Purpose: Ensuring eligibility and enrollment in health insurance coverage for all CSHS-Clinical Service patients.
• Measure 2. Medical Home
  • Purpose: Ensure access to a MH to provide family-centered, coordinated, and ongoing comprehensive care.
• Measure 3. Care Coordination
  • Purpose: Ensure CSHS-Clinical Services patients receive CC services to allow for optimal coordination and integration of services needed by the child and family.
• Measure 4. Referrals
  • Purpose:  Ensure the results of referrals to therapies and other service systems are documented in the EHR to enhance continuity of care
• Measure 5. Behavioral Health
  • Purpose: All children and youth attending a medical visit will receive a behavioral health assessment to ensure behavioral health needs are addressed
• Measure 6. Nutrition Services
  • Purpose: All children and youth attending a medical visit are screened for nutritional risk factors to ensure nutritional health needs are addressed.
• Measure 7. Transition
  • Purpose: Ensure CSHS-Clinical Service patients aged 14 and above receive transition to adulthood planning and readiness assistance

 

The BFH statewide social work consultant and statewide pediatric nurse consultant optimized the clinic electronic health records (EHR) to enable regular reporting of the defined measures. In 2021, BFH staff analyzed EHR data to determine baselines for the quality assurance measures and identify priority improvement areas. Of the seven quality measures listed above, CSHS clinics were exceeding the performance target for only one measure at baseline. The BFH statewide consultants received quarterly updates on these performance measures and, based on the data, engaged in QI activities including staff training on evidence-based care practices and revision of internal processes to support high quality service provision. By the end of FFY2022, performance on five out of seven quality measures were exceeding the target. The BFH statewide consultants will continue to meet with CSHS clinical teams and lead the implementation of new tests of change with the goal of improving the quality of care.

 

 

[1]This all essentially restates the first sentence. Is there any additional information here? What did the discussion yield? What are the next steps?

[2]The content beyond the first sentence seems to contradict the first sentence. Are we discontinuing care coordinator sponsorship moving forward?