Overview and Context of Population Domain

Of all Title V populations, Children and Youth with Special Health Care Needs (CYSHCN) are most vulnerable to changes in our healthcare system. The 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 ensuring 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 22% 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 just under half (49.6%) of CYSHCN receiving ongoing, comprehensive care within a medical home.1

CYSHCN Priorities and Performance Measures

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. To elevate and address these issues, the 2021-2025 State Action Plan strategies for this population domain are aligned with the “Ensure all CYSHCN receive care in a well-functioning system” Population Priority.

This priority is impacted and facilitated by several upstream factors. 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

In alignment with these Priority Needs, Louisiana Title V selected NPM 11: Medical Home as the CYSHCN National Performance Measure for the FFY 2021-2025 cycle.

Summary and Reflection of CYSHCN Efforts

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

Invest in Population-Based Approaches for CYSHCN: 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 (GDP). Title V has also maintained smaller investments in various care coordination, 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 need focuses 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 MCH pyramid” towards more population-level strategies.

Conduct pediatric subspecialty provider access landscape assessments for each region: One of the first special projects initiated in relation to this priority need was a targeted needs assessment of pediatric specialty care access region-by-region. Historically, Louisiana CYSHCN investments have centered around the provision of gap filling services through the Office of Public Health (OPH) Parish Health Units (PHUs), however BFH does not have an up-to-date understanding of what and where the current gaps are. 

In FFY 2021, a cross-team project workgroup was assembled to design and conduct the study. The workgroup designed the assessment around 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 part of the assessment focused on identifying what the health system and accessible patient care should look like in order to measure how BFH clinic practices and the system 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, such as NASHP National Standards for CYSHCN, Medicaid MCO provider manuals, State Medicaid Agency RFPs and other Medicaid materials, Patient-Centered Medical Home Standards, Kaye Johnson developmental health standards, National Committee for Quality Assurance, as well as some novel approaches to system integration. These standards were compared with the care standards of the BFH CSHS sub-specialty clinics.

The next part of the assessment focused on measuring patient access to care by identifying the population need for pediatric sub-specialty services and how the parish health units and private providers were meeting the 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 Families Helping Families organizations to contact all specialty providers in each region and gather information regarding whether or not they were accepting new patients, insurance types accepted, payment policies, wait lists, conditions treated and/or excluded, and more.

Care Coordination Special Projects: Historically, Louisiana Title V has invested in a myriad of parent support, care coordination, and resource linkage activities with variable scope and reach. While some of these activities were linked to the CSHS PHU clinic services, many care coordination services were delivered as part of other BFH programs and various contracts with external specialty clinics, academic medical homes, and resource centers.

To align the various care coordination activities across the bureau, BFH established a care coordination special projects workgroup and a part-time care coordination consultant position to help develop strategies to leverage BFH’s investments in and institutional knowledge of care coordination to enhance the overall system of care for CYSHCN. Over the past two years, the consultant and workgroup inventoried all of BFH care coordination investments and activities and created a care coordination matrix to begin defining the components of the care coordination activities. They also conducted a literature review of industry best practices, researched other state models, and conducted key informant interviews with BFH staff implementing various care coordination activities.

Together, these activities illuminated a key challenge and opportunity for improvement - there is not a shared understanding (across levels of the healthcare delivery and financing systems) of what care coordination is. There is not a shared understanding of who is responsible for what, and the lack of clarity continues to result in confusion, frustration, missed expectations, and un-optimized care for patients and support to their providers.

In FFY 2021, BFH initiated discussions with Medicaid to discuss opportunities for collaboration. After the initial meetings, the consultant developed a Care Coordination Swim Lane document to help identify points of intersection between LDH Medicaid, Medicaid MCOs, public health policy, public health provisional supports, and pediatric direct service providers.

Promoting Medical Home and Youth Health Transition: In FFY 2021, CSHS supported a number of education activities that targeted practicing and student health care providers. These education activities aimed to ensure clinicians have the knowledge, tools, and experience to promote and provide care coordination and make appropriate community referrals in their personal practices. As part of the pediatric development rotation, CSHS supported enhanced medical home/care coordination training for LSU New Orleans resident physicians. During this month-long rotation, residents work exclusively with CYSHCN experiencing varied developmental delays. Within the development clinic, each patient receives comprehensive care coordination services as a vital component of their overall plan of care. Residents, working in tandem with the clinic care coordinator, have the opportunity to explore the process of care coordination and experience the impact of comprehensive care coordination firsthand. In addition to working with the clinic care coordinator, the residents received specialized online trainings on best practices for care coordination, family-centered care, and the medical home along with a didactic lecture from the BFH Statewide RN Program Consultant. The didactic trainings included information on the medical home delivery model, care coordination, youth health transition, Medicaid and state agencies, the role of peer support, and key community programs that provide services for CYSHCN.

Sponsorship of Care Coordinators: During FFY 2021, Title V continued to sponsor care coordinators in five academic clinics. This initiative provided Louisiana State University and Tulane University pediatric/family medicine residents and medical students the opportunity to train in a medical home setting. CSHS care coordinators are masters-level professionals with specialized expertise with CYSHCN populations. In addition to providing a medical home setting for resident training, this initiative improves access to comprehensive care coordination services for publicly insured patients. At each partner practice, at least 85% of the population served is publicly insured. Sponsored clinics screen all new pediatric and adolescent patients for special health care needs. These sponsored care coordinators also supported efforts to build provider capacity through engaging clinic staff in the care coordination process and the provision of youth transition services.

Care Coordination Resources: Additional strategies to build medical home and care coordination capacity among existing and emerging health care providers focused on ensuring that clinicians have the tools and resources to deliver quality care coordination services to their patients. Title V publishes and manages region specific resource guides that lists basic service information, eligibility criteria, and contact information for the most frequently used pediatric/adolescent community supports and mental health referrals. Management of the CSHS Regional Resource Guides (RRG) includes annual content checks to ensure information remains current and inter-periodic edits when program changes occur. These RRGs were disseminated at CSHS workshops/presentations and at provider conferences and are available for download from the CSHS LDH and PartnersforFamilyHealth.org websites.

Implement Provider Youth Transition Toolkit: To further support medical homes in the state specifically around youth transition services, Title V developed a new Louisiana Youth Health Transition (YHT) Toolkit. The YHT Toolkit is based on clinical practice guidelines, Got Transitions’ Six Core Elements of Transition, and lessons learned from our field experts. Using a quality improvement framework, the toolkit offers a streamlined method for implementing and improving evidence-based transition services in primary or specialty care settings. In FFY 2021, BFH began piloting components of the toolkit within the CSHS clinics and confirmed plans to pilot the toolkit with a partner community clinic.

Redevelopment and expansion of Family Resource Center: Prior to the COVID-19 pandemic, Title V sponsored a Family Resource Center (FRC) housed within Children’s Hospital New Orleans. Historically, the FRC was primarily used by patients and providers within the hospital, but BFH had begun to explore virtual models to expand service reach of the FRC. In March of 2020, the FRC transitioned to a virtual resource due to the “stay at home” order, temporary closure of many of the hospital’s affiliated clinics, and the move from in-person patient visits to telehealth, and BFH leadership and the FRC team decided to begin redeveloping the FRC as a virtual, statewide, resource and referral hub resource hub. Through this transition, the FRC was re-envisioned to take a more universal approach toward family-centered, community-based systems of coordinated care for all children, including CYSHCN, that serves in a similar capacity to a coordinated intake and referral system. The FRC is currently set up as a virtual statewide resource staffed by a small number of Resource and Referral Specialists, whom families can access directly by phone and email via the FRC mailbox. The Resource and Referral 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 call the FRC, complete a brief inventory of needs, and leave the call having identified, understood, and connected with the resources and additional referrals that are most relevant and useful to them. Needs would be prioritized based on the families’ stated preferences. Based upon results of an intake assessment, a Resource and Referral Specialist would connect families with other agencies or departments based on their preferences and specific needs. If the family wishes to provide their contact information, the Resource and Referral Specialists would follow up with them to make sure that the original referrals are working out for them and to see if any additional assistance is needed. Alternatively, providers might email the FRC directly to provide information on the needs of families as assessed during the families’ visit with the provider and to request that the FRC reach out to connect with the families directly. The FRC in its current structure is a valuable resource to the small number of providers and families that know about it and routinely use it.

Due to the initial success of the FRC and its potential value to help advance multiple BFH goals, BFH has invested capacity and resources to expand support for the FRC in anticipation of increased demand. In reorganizing as a virtual, statewide entity, the FRC staff have worked to build the internal capacity to refer families to resources anywhere in Louisiana. Throughout FFY 2021, BFH has trained staff to deliver services virtually and by phone, built a statewide database and collection of resources for referrals, tested phone scripts, secured a 1-800 number, and created a series of briefs outlining new resources to disseminate to staff, partners at public health units, and update its internal resource guides.  

While BFH has laid significant groundwork for the expansion of FRC services and offerings, there has not been a corresponding expansion in the volume of family and provider users yet. As a result, the FRC has not had a critical mass to test its mechanisms and assess if its strategies will be effective for much larger scale use. Families and providers have not been widely informed about the new format and offerings of the FRC as they have evolved as a result of the COVID-19 pandemic.

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

Support regional Families-Helping-Families (FHF) organizations: In FFY 2021, BFH continued to expand its partnership with 10 regional Families Helping Families (FHF) organizations, independent non-profit, family-driven resource centers. Historically, Title V contractual partnerships with these organizations focused on providing peer support to CYSHCN and families served exclusively through Title V safety net clinics and the brick and mortar FRC in Children’s Hospital. Halfway through FFY2020, BFH began working with the FHF organizations to develop new contracts to expand the reach of family support beyond the clinic population and FRC clientele. In contrast to the previous simple staffing contracts, the new deliverable-based contracts aim to increase the overall organizational capacity of local FHF organizations to effectively serve all CYSHCN in their region. The contracts require FHF organizations to be knowledgeable about the CYSHCN in their communities, including their conditions, needs and challenges, and to understand the healthcare systems serving CYSHCN in their service areas. These new contract deliverables are intended to ensure that healthcare providers serving CYSHCN in their service areas are aware of FHF resources and best-practices for supporting CYSHCN and their families. Finally, the contracts aim to increase FHF agency and workforce readiness to potentially integrate activities into future healthcare systems and service payment models.

During FFY 2021, BFH developed a team coaching model and provided intensive technical assistance (TA) to the FHF organizations to support contract implementation. This process also allowed the Family Consultant and Statewide Nurse Consultant to build relationships with each of the ten FHF centers and understand what kinds of ongoing support would be needed for full contract implementation. To assist the FHF centers with implementation, capacity building, and continuous quality improvement related to building a coordinated resource and referral network, the Family Consultant and Statewide Nurse Consultant developed a Change Package Checklist tool.

Enhance partnerships with family and community-led organizations: 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 subsets of the Title V CYSHCN population. In FFY 2021, BFH restructured the contract management processes with these organizations to improve coordination and accountability and to increase the reach and impact of these partnerships. 

In FFY 2021, BFH developed new contracts and performance management processes with all partner Sickle Cell Foundations across the state. Sickle Cell Foundations are independent nonprofits that provide care coordination and supportive services free of charge to persons living with sickle cell disease. In FFY 2021, the Sickle Cell Program Manager facilitated monthly calls with the Sickle Cell Foundations to promote coordination between the Foundations and the Sickle Cell Program. These calls have evolved into an effective forum for the Foundations to share best practices and challenges related to service delivery and operations, collaborate on advocacy and outreach activities, and provide input related to BFH Sickle Cell program, including the development of the new contracts.

 In FFY 2021, BFH implemented its revised contract with Louisiana Hands & Voices (H&V), a statewide parent-driven organization that supports families of children who are deaf or hard of hearing (D/HH). The HRSA-funded Louisiana Early Hearing Detection and Intervention (EHDI) team also implemented new processes and strategies to increase collaboration and teamwork with H&V. A priority for the EHDI program is to strengthen capacity to provide family support and engage families with children who are deaf or hard of hearing (D/HH) and adults who are D/HH throughout the EHDI system. The EHDI team now facilitates monthly calls with the H&V Program Managers, as well as monthly calls with Parent Guides and D/HH Guides that provide direct peer support to families. In FFY 2021, the EHDI and H&V teams revised performance expectations and developed quarterly performance expectation reviews and self-reflection documents to encourage evaluation of individual and team effectiveness.

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

CSHS and Genetic Diseases Program Evaluations: Historical CYSHCN services have focused on provision of gap filling services through the OPH Parish Health Units. Over the past two years, Title V has supported formal evaluations and systematic assessments of these activities. The result has been a fundamental reorientation of core public health screening and diagnostic systems and the beginning of a new vision for how Title V works to strengthen the systems of care and support for children and youth with special healthcare needs.

The BFH CSHS and Genetic Diseases Programs based their program evaluations in the Institute for Healthcare Improvement (IHI) conceptual model of Triple Aim: 1) Improving the patient experience of care (including quality and satisfaction); 2) Improving the health of populations (good outcomes); and 3) Reducing the per capita cost of health care. Both evaluations were rooted in 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?

Evaluation sub-questions for the CSHS evaluation were:

• How does CYSHCN central office staff ensure that all Louisiana CYSHCN are receiving necessary care and that necessary “safety net” clinical services are available to eligible residents in all areas of Louisiana?
• What quality assurance, program monitoring and communication strategies are in place to assure that overall program quality is met and maintained; and that purpose, goals and objectives are being met (e.g., efficient use of resources, contracts and reporting regarding monitoring, chart audits, service reports, communication to providers and internal OPH staff, etc.?)
• How relevant and useful are the dated administrative rules (and ensuing operations) for ongoing and future CYSHCN clinical services, particularly in the context of the current federal CYSHCN paradigm and the state sociopolitical/health climate?
• What forward progressing strategies and learning opportunities are available for the Louisiana CYSHCN central office staff to embrace?

Evaluation sub-questions for the Genetic Diseases Program evaluation were:

• Is the newborn heel stick screening program meeting national standards for completion and follow-up of positive results?
• How does the Genetic Diseases Program ensure that all genetic clinical services are available to eligible residents in all areas of Louisiana?
• What program strategic planning processes are in place to assist in meeting the intended purpose of the program and to foster sustainability?
• What quality assurance, program monitoring and communication strategies are in place to assure that overall program quality is met and maintained; and that purpose, goals and objectives are being met?

Upon completion of the programmatic evaluations, the CSHS and Genetics programs developed comprehensive work plans to implement the recommendations to build upon existing strengths and address gaps and weaknesses.

CSHS and Genetics Clinical Quality Improvement: As part of this workplan, in FFY 2021, CSHS staff developed a clinical services QI plan and corresponding QA performance measures based upon nationally recognized standards: 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 QA measures track performance in relation to the following areas:

• Eligibility and Enrollment in Health Coverage
  • Purpose: Ensuring eligibility and enrollment in health insurance coverage for all CSHS-Clinical Service patients.
• Medical Home
  • Purpose: Ensure access to a Medical Home to provide family-centered, coordinated, and ongoing comprehensive care.
• Measure 3. Care Coordination
  • Purpose: Ensure CSHS-Clinical Services patients receive care coordination services to allow for optimal coordination and integration of services needed by the child and family.
• 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 EHR to enable regular reporting of the defined measures. In 2021, BFH staff analyzed EHR data to determine baselines for the QA measures and identify priority improvement areas.

Screen newborns for all recommended genetic conditions: A continuing goal for the FFY 2021-2025 state action plan cycle is to test 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. Strategies for FFY 2021 and beyond build upon progress and lessons learned from the previous state action plan cycle to work towards adding the final four conditions (SMA, MPS1, Pompeii Disease, and X-ALD) to the state NBS panel. In FFY2021, BFH worked to add SMA to the panel and is prepared to begin work to add X-ALD.

Improve timely linkage to care in screening and surveillance systems: During the FFY 2016-2020 block grant cycle, Title V prioritized improving the performance of public health screening and surveillance systems to ensure early detection of special health care needs and timely linkage to treatment. Title V SAP strategies focused primarily on improvements in the genetic NBS and EHDI screening programs, and many program goals related to Form 4 were achieved. During the FFY 2021-2025 block grant cycle, BFH will expand priority screening and surveillance system improvement efforts and focus to include additional systems and will focus on improving health outcomes through timely linkage to care.

Newborn Genetics Screening and Follow-up: The Genetics Program ensures that all infants who are presumptive positive for a genetic condition on the newborn screen receive timely and appropriate follow-up, and these children are monitored until a diagnosis is confirmed. As a result, in FFY 2021, 100% of newborns with positive screens received timely follow up to definitive diagnosis and clinical management. 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.

Identify areas of Louisiana underserved by the EHDI system: The Louisiana Early Hearing Detection and Intervention (LA 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. It is important to identify a baby's hearing level as early as possible so families can figure out the best way to communicate with them. Hearing screening is the first step in finding out if a child is deaf or hard of hearing. Louisiana law mandates that all babies be screened prior to hospital discharge. EHDI follows the Joint Committee on Infant Hearing's Position Statement and national 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. Enrollment in early intervention as soon as possible plays an important part in helping children who are deaf or hard of hearing reach their full potential.

Historically, geographic access has been a factor negatively impacting timely diagnostic testing and hearing aid fitting, especially in the northern part of the state. To better understand the gaps in the healthcare system for infants diagnosed with hearing loss, BFH epidemiologists worked with the EHDI team to develop and implement a geo-mapping process to analyze and display geographically referenced information using data attached to unique locations. For the first project, the team created two maps, EHDI Screening and Diagnostics, and EHDI Hearing Aids & Cochlear Implants, which enabled EHDI staff to visualize the impact of geographic location on babies who become lost to follow up for rescreening and diagnostic testing, as well as the impact of geographic location on access to hearing aids and cochlear implants for children who are diagnosed as deaf or hard of hearing.  Upon internal review of the geo maps and follow-up data were reviewed, the northwest area of the state was identified as underserved by the EHDI system. In FFY 2021, the geographic mapping was used in regional EHDI meetings with program partners and other stakeholders to support discussions about identified barriers and strategies for system improvement. Attendees included parents of children who are deaf or hard of hearing, EarlySteps (Part C), the Parent Pupil Education Program (PPEP), EI service providers, audiologists, hospital screening personnel, newborn hearing screening program supervisors, primary care providers, ENTs, and the MIECHV program.

Louisiana Birth Defects Monitoring Network: Louisiana Title V continued to fund the Louisiana Birth Defects Monitoring Network (LBDMN), the program responsible for surveillance of birth defects in Louisiana's children. LBDMN staff conduct active surveillance of birth defects in children born in Louisiana. Monitoring the health status of newborns provides population-based data to help inform policies, educate the public, support efforts of community partners, and prevent new occurrences of birth defects. LBDMN evaluates concerns about unexpected groups of birth defects as well as the effectiveness of preventive interventions. Regionally assigned Data Collection Specialists (DCS) statewide evaluated patient discharge information of newborns until age three years from all birthing hospitals in Louisiana, as well as at Children’s Hospital and Tulane University Medical Center in New Orleans. 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.

The program also assists families of infants from birth until three years of age with birth defects with 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 FFY2020 and FFY2021, the LBDMN program underwent a strategic planning process that resulted in some notable operational changes. As part of this process, LBDMN utilized the National Birth Defects Prevention Network guidelines and standards to critically assess every area of operations to realize efficiencies in data collection and case finding to produce timely actionable data. This process resulted in streamlining of the data collection, analysis, and reporting approach that focuses on and elevates actionable data that can be used for timely referrals and informing higher-level population and programmatic strategy.