Summary of Title V strategies for CYSHCN

A foundational element of Louisiana’s system of care for CYSHCN is the newborn genetic and hearing screening programs. These programs ensure early identification of risk and the opportunity for early intervention and treatment. Along with the pediatric medical home these programs promote optimal health outcomes for CYSHCN.  

 

A pediatric medical home describes a primary care setting that provides coordinated, continuous, culturally effective, comprehensive, family-centered health care services. The Healthy People 2020 agenda underscores the importance of care in a medical home and targets increasing the proportion of children who have access to a medical home. The National Standards for Systems of Care for Children and Youth with Special Health Care Needs also highlights the medical home and care coordination as central to meeting the needs of our CYSHCN. CSHS maintains a clear focus on our state priority need to improve access to and quality of primary care services and plans to continue major investments in building medical home capacity around the state.

 

Based on 2018 Block Grant guidance, CSHS merged the Medical Home and Youth Health Transition CYSHCN measures and created a unified robust work-plan. BFH embedded all planned youth transition strategies within the NPM 11 Medical Home work-plan, taking the opportunity to create a streamlined and cohesive story of the CYSHCN Title V work.

 

FFY 2020 represents the final year of the 2015 State Action Plan.  BFH will utilize findings from the new five-year State Needs Assessment to determine priority needs for Louisiana’s CYSHCN going forward.  From that assessment, the CYSHCN team, along with families and other key stakeholders, will develop a State Action Plan utilizing evidence-based strategies and measures, aiming to make the greatest impact on optimal health outcomes for CYSHCN. 

 

Planned Title V Strategies and Alignment with Priority needs

Priority Need: Ensure high performing essential MCH screening and surveillance systems.

Ensure high performing newborn genetic screening

 

Screening: In FFY 2020, The BFH Genetic Diseases Program will work with the Louisiana Newborn Screening Advisory Committee to develop a plan to add all conditions recommended by the Advisory Committee on Heritable Disorders in Newborns and Children to the Louisiana newborn screening panel.  Consideration will be given for the following conditions not yet added: X-linked Adrenoleukodystrophy (X-ALD), Spinal Muscular Atrophy due to homozygous deletion of exon 7 in SMN1 (SMA), Glycogen Storage Disease Type II (Pompe) and Mucopolysaccharidosis Type 1 (MPS 1). Inclusion of the above conditions are dependent on Medicaid reimbursement for testing, and whether adequate services are available for treatment of affected children.

To ensure Louisiana maintains a 99% newborn genetic screening rate, the Genetics Program will continue to match data obtained through the Louisiana Electronic Events Registry System (LEERS) against heelstick specimens. Genetics staff will then follow up with providers of newborns without a valid heelstick screen prior to one year of age.

 

To allow for more efficient matching of babies born and the number of newborns screened, a Genetics module has been added to LEERS to include the newborn heel stick screening collection information. This project is currently in the pilot phase and the program aims to implement the module to all birthing hospitals in FFY 2020.

 

Follow-up: The Genetics Program will continue working to ensure that all infants who are presumptive positive for a genetic condition on the newborn screen receive timely and appropriate follow-up. Title V will also continue to contract with medical geneticists, endocrinologists, hematologists, and pulmonologists to conduct specialty clinics to ensure early detection and initiation into specialized care.

 

Ensure high performing newborn hearing screening

Screening and Follow-up: The Louisiana Early Hearing Detection and Intervention (LA EHDI) will continue to monitor and analyze daily screening data feeds received from LEERS and provide one-on-one technical and programmatic assistance to hospitals with less than 99% screening rates. During FFY 2020, LA EHDI plans to develop a targeted data analysis plan for program evaluation. The program is interested in trend analysis to support identification of risk factors for Loss to Follow-up and/or Loss to Documentation after newborn hearing screening and diagnosis.

Best Practices and Resources: In FFY 2020, work will continue around updating the LA Pediatric Audiology Guidelines to include the latest recommendations from the American Academy of Audiology and the Joint Committee on Infant Hearing.  To ensure that all families receive consistent information after their child is identified as deaf or hard of hearing (D/HH), Title V staff are developing a document to provide families with information regarding communication options and resources. Additionally, a Memorandum of Understanding (MOU) for a specialized point of entry into early intervention specific for deaf and hard of hearing children is being developed. The purpose of the MOU is to ensure that the family’s initial contact is with a professional that is knowledgeable about hearing loss.

 

Priority Need: To actively and meaningfully engage youth and families, building local level leaders across the state.

 

Parent Support Programs and Partnerships

CSHS Parent Liaison Program: According to the American Association of Pediatrics (AAP), family partnerships and care coordination are foundational elements of the patient-centered medical home.1 As shown by prior needs assessments, families of CYSHCN require extensive support to navigate a complex system of care.  In order to maximize reach, Title V will continue to elevate the concepts of family partnerships and care coordination by providing peer-to-peer support through Parent Liaisons (PLs) in specialty clinics that serve a high volume of complex patients. These PLs improve the communications between the patient's medical home and other resources, working to ensure a well-functioning system. As outlined in detail in the CYSHCN report, PLs are the backbone of the CSHS family support program.

 

CSHS will continue to contract with Families Helping Families Centers (FHF) statewide for Parent Liaison staff. FHFs are individual, non-profit, family-driven resource centers. They are a group of families, who, through their own experiences, promote advocacy and are committed to reaching other families who have members with disabilities.  FHF centers are directed and staffed by parents, self-advocates, or family members of individuals with disabilities. The centers provide education and trainings, peer support, and information and referrals as part of their free services.

 

During FFY 2020, Title V will continue to develop and expand the capacity of family support staff through quarterly trainings and seek to align the work of all parent leaders across the bureau. Title V will continue to employ two-full time Parent Consultants (PC), a PL in each region of the state, and a youth liaison (YL) to support CSHS’ work at the Family Resource Center (FRC) at Children’s Hospital. All family support staff are the parent or primary caregiver of a CYSHCN or an individual with special health care needs. The two Parent Consultants will continue to work collaboratively to ensure all PL/YLs are equipped to provide resource information to CYSHCN and families within CSHS clinics and during community outreach events. The Statewide Parent Liaison Consultant will provide supervision to PLs located in CSHS clinics and at the FRC. The Statewide Parent Training Coordinator will continue to plan and conduct trainings for YL/PL staff.

 

The Hearing, Speech, and Vision (HSV) program will also continue to provide parent support services. In FFY 2020, HSV plans to revise and renew the Memorandum of Understanding with LA Hands and Voices Guide by Your Side (GBYS) Program to improve family engagement through parent-to-parent support for children newly identified as deaf or hard of hearing (D/HH). To improve active family engagement/partnerships, families will be surveyed around satisfaction with supports and resources. This survey feedback will be analyzed and applied to quality improvement activities to improve outcomes for families. 

 

Family Resource Center: Helping families effectively navigate the system of health and community services is a top priority for CSHS. In addition to ensuring a capable provider workforce armed with the resources to support families, CSHS continues to support the Family Resource Center (FRC) at Children’s Hospital in New Orleans. The FRC provides parent support services in outpatient clinics and through the FRC office on the campus of Children’s Hospital. The FRC houses a resource room to provide families access to computers, printers, and copiers to facilitate access to online program applications and electronic correspondence. In addition to direct coordination and linkage services, the FRC will host the 6th Annual CHNOLA Staff Resource Fair. The FRC resource fair will focus on a specific topic, which will be informed by feedback from the 2019 evaluations, the FRC advisory team, and CHNOLA staff. In FFY 2020, BFH plans to engage CHNOLA leadership around the footprint of the FRC at CHNOLA as the campus undergoes major renovations and upgrades.

 

Virtual Resource Hub: Since digital communication channels are an important dissemination path, upgrades to the LDH and PartnersForFamilyHealth.org platforms will be an ongoing component of the CSHS work-plan. PartnersForFamilyHealth.org is BFH’s unified web presence for all Title V programs.  The Health Education and Communications (HEDC) specialists and CSHS team will continue efforts to improve website navigation, update web content, and guide the development of social media messaging. The HEDC specialists are working to mirror work in other states, creating a one-stop-shop resource hub that will support families with access to health information resources and community program information.

 

Priority Need: To improve access to and quality of primary care, reproductive health, and specialty clinical services including care coordination.

 

Support development of future and existing CYSHCN workforce: Developing workforce skill sets to support care coordination, transition, and the medical home is a foundational step to improving the quality of primary care. AAP, American Academy of Family Physicians, and American College of Physicians policies endorse care coordination and youth transition support as essential components of the medical home. The following activities describe various training strategies, which are measured through ESM 11.1: # of health care providers trained on Medical Home, Care Coordination and Youth Health Transition.

 

Care Coordination Sponsorship: CSHS plans to continue partnerships with key academic practices to promote medical home standards and provide training opportunities for emerging pediatric and family medicine physicians. Through sponsorship of dedicated care coordinator staff, residents experience the care coordination process firsthand and train in a medical home setting. Clinic eligibility for care coordination partnerships requires that 50% or more of the patients served are publicly-insured, and the clinic must implement the CSHS Care Coordination Model using the national CSHCN Screener.

 

During FFY 2020, CSHS will continue exploring opportunities and methods to retrospectively study Medicaid claims data to assess the effectiveness of the CSHS Care Coordination Model in reducing ER visits in complex patients. The CYSHCN epidemiologist determined to use the Pediatric Medical Complexity Algorithm (PMCA) to identify CYSHCN and will be reviewing the methodology and developing an analysis proposal.

 

CSHS will also continue further physician workforce development through support of LSUHSC New Orleans Pediatric Development Rotation medical home trainings. During the month-long rotation, residents will receive a didactic lecture provided by CSHS staff in addition to specialized online trainings on the medical home model, care coordination, family centered care, and youth health transition. In addition to the didactics, residents will work in tandem with the care coordinator managing and coordinating care for CYSHCNs served in the development clinic.

 

Resource Information Workshops (RIW): CSHS RIWs have continued to serve as a method for reaching providers with valuable public health and community resource information and for trainings on youth health transition, care coordination, supports and services for CYSHCN, and developmental screening.  CSHS will continue to plan and host two RIWs in FFY 2020. The targeted locations for the RIWs are Region 3 (Thibodaux/Houma), and Region 6 (Alexandria). These RIWs will include continuing education credits for nurses, social workers, and licensed professional counselors. The Support and Services Section of the workshop will include representatives from the Office for Citizens with Developmental Disabilities (EarlySteps), Department of Children and Family Services, Louisiana Rehabilitation Services, Head Start/Early Head Start, MIECHV, and Area Human Services Districts. CSHS will continue to build upon the success of previous RIWs by utilizing participant evaluation data for continuous quality improvement. The program will also incorporate the use of an audience response system to support evaluation of the effectiveness of the CE trainings.

 

The HSV program’s Early Hearing Detection and Intervention (EHDI) Learning Community will continue their work around care coordination in FFY 2020. The HSV program will utilize the collective expertise of the EHDI Learning Community to develop plans of care to provide guidance for health care providers around the management of children with the potential for a diagnosis of deaf or hard of hearing. Care plan templates outlining best practices will be developed for children who: a) complete the newborn hearing screen (NHS) and require further testing, b) complete outpatient rescreening and require diagnostic testing c) pass NHS, but have risk indicators for congenital or late onset hearing loss, and/or d) are diagnosed as deaf or hard of hearing.

 

Continuing Education: The CSHS team will seek new opportunities to engage medical, nursing, social work, and allied health schools with existing and new virtual trainings on care coordination and associated topics. Technical assistance offerings for youth transition supports and care coordination will be available to pediatric and adolescent health care providers, as well as MCO quality teams.

 

Virtual Resource Hub: As previously mentioned, website upgrades will be an ongoing activity throughout FFY 2020. CSHS will use the same framework for the provider resource hub as for the family resources.  There will be continued focus on process improvement for CSHS webpages to enhance digital communication on both the LDH web platform and PartnersforFamilyHealth.org. 

 

Provider Resource Dissemination: CSHS previously distributed region-specific resource packets to providers through its annual mass mail-out initiative. The core component of the mass mail-out packet is the Regional Resource Guide, a two-page comprehensive list of agencies providing complimentary services for CYSHCN. These Resource Guides encourage care coordination by providing practices with a comprehensive view of resources available to patients and includes contact information. Work to update this strategy, including branding/graphics design, revision of program resources, and testing alternate dissemination methods will continue. BFH plans to pilot the packet in late 2019. The team will test a “warm handoff” method in which the resources are introduced and discussed with providers in person, and there will also be a broad dissemination of electronic resource packets through key state partners such as the Bureau of Primary Care and Rural Health, Louisiana AAP, and Louisiana Academy of Family Physicians.

 

During FFY 2020, CSHS and the BFH communications team will continue to seek opportunities for expanded collaborations with the Exceptional Lives team to enhance care coordination via electronic information technology and will continue dissemination of care coordination resources through the developmental screening TA project.

 

Health Policy: The HEDC specialist, a member of the BFH Health Equity Action Team, will continue to lend expertise to the CSHS team and apply a health equity lens to all CSHS programmatic activities and public-facing materials. Using this health equity lens, CSHS aims to advocate for and address health disparities experienced by CYSHCN families. Work toward ensuring that CYSHCN have equitable access to needed supports and services is a BFH priority.

 

BFH will continue to pursue opportunities to expand collaboration with Medicaid and Medicaid MCOs to address provider barriers to adoption and implementation of coordinated care practice models and offer TA. The Health Systems Strategy Manager will facilitate collaborative calls/meetings with Medicaid and Medicaid MCOs to identify opportunities for care coordination partnerships.

 

CSHS Safety Net Clinics: Access to specialty care for CYSHCN continues to be a barrier in receiving needed services for CYSHCN populations. BFH-CSHS program will continue to provide safety net clinics in areas of the state where needed subspecialists are not available for CYSHCN families. This will eliminate traveling barriers for some families and decrease unnecessary ED visits. CSHS will continue to contract with subspecialists to attend monthly and/or quarterly clinics located in public health units throughout the state. All CSHS clinics include a specialist physician, nurse and a PL. In some regions, there is also a CSHS social worker. Clinic staff work in tandem to provide care coordination services, link patients to medical homes, develop and share plans of care, and provide youth health transition services.  The PL role will continue to focus on community program linkage and provides families with peer support services. PLs attend all CSHS, Genetics, and Sickle Cell Clinics.

 

As Medicaid/Medicaid MCO subspecialty provider capacity continues to build and the need for safety net subspecialty clinics decreases, CSHS will explore opportunities to utilize the collective expertise of CSHS clinic staff to support new evidence-based strategies. Potential options may include expansion of the Family Resource Center (FRC) model and/or development of regional health hubs to support the overall health needs of Louisiana’s children.

 

Enhance Clinic Operations: Work to enhance CSHS clinic operations through building IT infrastructure to document and measure care coordination and health transition activities will continue in FFY 2020. Currently the Success EHS Electronic Health Record (EHR) system is used throughout all public health units. The CSHS Uber Super User Group will continue to support development of processes and procedures working to improve care, outcomes, and care coordination services for CYSHCN. The CSHS Uber Super User Group addresses practice-related issues, interoperability issues, utilization, workflow structure, clinical data exchange, CPT coding, and billing issues during monthly work meetings. 

 

In addition to the OPH work, CSHS will continue collaborations with care coordination partner practices around development of effective IT strategies to support care coordination and YHT services at the clinic level. CSHS will collaborate with partner practices on new electronic reporting mechanisms aimed to reduce administrative burden and illustrate the reach of care coordination services.

 

Over the past year, the FRC team worked with Children’s Hospital clinics to support an EHR build-out of referral dropdown fields by providing information on key community resources. These new EHR referral options will support Children’s Hospital staff with linking families to information about needed resources and community referrals. The FRC team will continue to provide input to Children’s Hospital staff around expansion of EHR referral options.

 

Gap-filling Supports: CSHS social workers will continue to work with families to pursue eligibility for Medicaid and provide them with options for the best source of health insurance to meet their needs. PLs will survey families to determine if their insurance is adequate, and if determined inadequate families will be referred to the appropriate MCO insurance helpline. In circumstances where patients are not eligible for Medicaid or any other insurance, CSHS will serve as the payer of last resort for eligible CYSHCN up until age 21 and will cover limited medication costs for qualifying patients with cystic fibrosis throughout adulthood.

 

As part of ensuring that CYSHCN receive the services they require, CSHS will continue the transportation stipend program. Transportation is often a noted as a barrier to healthcare access. It can lead to rescheduled or missed appointments, delayed care, and other factors that contribute to poor management of chronic conditions. The Transportation Assistance Program will provide stipends to cover fuel costs for travel to medical appointments and medically necessary services. If an overnight stay is required for surgeries or other extended visits, the stipend will include meal and hotel costs.  Based on revised processes, for patients insured through Louisiana Medicaid/Healthy Louisiana, CSHS staff will first work to coordinate transportation services through their plan’s benefits and work with our Medicaid partners to address service barriers before applying for the CSHS Transportation Assistance Program benefit.

 

Priority Need: To improve the ability of care systems to serve and support children, adolescents, and CYSHCN through transitions.

 

Transition Resource Dissemination: Building and expanding internal and external collaborations around improving transitions of care for CYSHCN is an ongoing priority for the BFH-CSHS program. As discussed above, CSHS’s central office team, PC/PL and the communications team will focus on new dissemination methods and channels to enable families and providers to access resources to support children and youth through all transitions of care.  

 

In addition to providing transition supports in CSHS clinics and through the FRC at Children’s Hospital, the PL workforce also support community dissemination of transition resources and tools through attending health and transition fairs. Transition resources such as the CSHS Getting Ready for Transition tools and SmoothMovesYHT.org flyers will be shared through these events. A new Transition Checklist, which is part of the YHT Transition Toolkit will be launched late 2019 after an external review is complete. Also planned for this fiscal year are upgrades to the SmoothMovesYHT.org site.  SmoothMovesYHT.org, a web-based youth transition resource that delivers evidence-based, teen-friendly health promotion information, will be moved to a mobile optimized platform. The new site will house Louisiana-specific resources and will provide access to over 30 transition tools and resources developed by expert workgroups and universities around the country, as well as new video content. Information on the FHF transition services will also be disseminated through the FRC, community events, and at CSHS clinics. Each FHF center offers peer support, transition resources, and family workshops on transition.

 

Collaborative Youth Transition Campaign: During FFY 2020, the CSHS team will implement a YHT collaborative education campaign focused on the transition from pediatric services to adult health systems and adulthood. The target audience for the campaign is transition-aged youth (with and without special health care needs) and their families. The CSHS HEDC specialist, central office team, and PC/PL will engage key partners around this multifaceted outreach. Targeted partners include stakeholder organizations such as FHF, OCDD/Human Services Districts, Healthy Louisiana Plans, Louisiana Area Health Education Centers, LPHI, FRC, and BFH Regional MCH Coordinators.

 

Promoting Provider Youth Transition Services: In care coordination partner practices, CSHS care coordinators promote youth transition services at the clinic level, implementing CSHS transition tools and referring youth/families to transition resources. Collaboration with the BFH Adolescent School Health Program (ASHP) also provides opportunities to reach providers who serve CYSHCN through school-based health centers (SBHC). CYSHCN team plans to engage SBHCs around piloting new CSHS transition tools. CSHS will also collaborate with the BFH Sickle Cell program to disseminate resources and incorporate YHT in conference programs.

 

Provider Youth Transition Toolkit: To further support medical homes in the state specifically around youth transition services, CSHS will pilot, evaluate, and disseminate an updated Louisiana Youth Health Transition Toolkit in FFY 2020. To date, the toolkit draft is undergoing final revisions.  Once the final draft is approved internally, the YHT Toolkit will undergo external partner evaluation and then be piloted in select clinics before broad dissemination.