Of all populations, Children and Youth with Special Health Care Needs (CYSHCN) are most vulnerable to changes in our healthcare system. Screening, transition support, and timely access to comprehensive, coordinated care in a medical home are critical to helping CYSHCN minimize their disabilities and maximize their independence. Louisiana has a higher percentage of CYSHCN, a higher percentage of CYSHCN living in poverty, and more severe health care provider shortages than most states. Medicaid changes to Managed Care Organizations (MCOs), closure of most Title V Children’s Special Health Services (CSHS) clinics, and now expansion of Medicaid all have a significant impact on CYSHCN and their families.

 

Title V Strategies and Alignment with Priority Needs

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

Newborn Screening: A core Title V approach to enhance systems of care for CYSHCN is to ensure early detection of special health care needs and timely linkage to treatment. A foundational strategy is to ensure high performing newborn screening programs for genetic conditions and early hearing loss.

Genetics: BFH Genetics Program currently tests for 30 of the 34 conditions listed on 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.

Of the 59,773 children born in Louisiana in 2018, 58,912 (98.6%) had at least one newborn blood spot screen. In order to determine the number of newborns who are screened for all conditions listed on the screening panel, OPH match data obtained through the Louisiana Electronic Events Registry System (LEERS) against specimens received from birthing facilities. LEERS is the system hospitals use to transmit birth record data to the state’s Vital Records program. For living infants with no or unsatisfactory screenings, or whose parents have not opted out of a screening, the primary care physician was contacted to request a valid screening.

In 2018, 1,993 infants had a presumptive positive test result, and of those, 139 infants had a confirmed diagnosis of a genetic disease. Sickle cell disease and congenital hypothyroidism were the two most often diagnosed heritable conditions.

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 at over 10 sites around the state.

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, 100% of newborns with positive screens received timely follow up to definitive diagnosis and clinical management.

The Genetic Diseases Program and the OPH Laboratory continued efforts toward adding Severe Combined Immunodeficiency (SCID) to the newborn screening panel. OPH used funds from a CDC grant to purchase the necessary equipment and supplies to perform proficiency testing for SCID. Amendments to The Newborn Screening Rule to include testing for SCID were successful. Implementation of SCID screening was pending based on identification of a sustainable funding stream for the added testing. On July 10, 2018, a proposed rule to amend the existing rule to add SCID to the newborn screening panel was sent to the Legislative Oversight Committees. The Legislative Oversight Committees adopted the final newborn screening panel rule per the October 20, 2018 issue of the Louisiana Register.  In preparation for the addition of SCID to the panel, the Genetic Diseases Program and the OPH Laboratory worked together to expand testing capacity while exploring/identifying additional funding streams. Moving forward the Genetics Program plan to work with Medicaid around a policy change to add SCID to the fee schedule and allow for reimbursement. In FFY 2019 OPH began testing for SCID as part of the newborn screening panel.  For calendar year 2018, 40 infants had a presumptive positive screen result and of those, 0 infants had a confirmed diagnosis of SCID.   

Hearing: The Louisiana loss to follow-up rate for the first half of FFY 2018 was 16.3%, a 7.44% decrease over the 2017 loss to follow-up rate of 17.6%. An analysis was conducted on children born between July 2017 and June 2018 who were diagnosed with permanent hearing loss to determine if the goal of diagnosis by three months of age was achieved. There were 80 children diagnosed with permanent hearing loss from this cohort. Of these 80, 37 were diagnosed before three months of age (46.3%), meeting the Joint Committee on Infant Hearing’s benchmark. An additional seven infants (8.8%) were diagnosed at three months of age, just missing the goal.  One infant diagnosed at six months of age passed the initial screening, and was thus removed from the analysis. Of the 42 diagnosed at or beyond three months of age, 25 (59.5%) were late to diagnosis due to patient factors such as missed appointments, extended stay in the NICU, medical treatment between hearing evaluations, and passing an earlier screen. Six of the 42 infants (14.3%) did not have an outpatient rescreen scheduled at discharge. The 12 remaining infants (28.6%) who were late to diagnose were due to: excessive rescreens performed before referral for full diagnostic evaluation (6), excessive delay in facility scheduling diagnostic appointment for patient (3), and excessive delay due to patient switching facilities (2).

The LA EHDI epidemiologist conducted monthly data linkages with birth records in order to obtain birth information for children who had a newborn hearing screening (NHS) or follow-up testing reported by a physician or an audiologist, but were not entered in LA EHDI-information system (IS). These linkages included only children who were three months old or older. Between July and December 2018, there were 36 children included in the linkages. Children not found in the LA EHDI-IS and LA birth records were assumed born out of state with absent or late birth records submissions to LA Vital Records. The EHDI Data Coordinator updated birth data and manually created new records in LA EHDI-IS for unlinked children to support follow-up tracking. 

The Louisiana Early Hearing Detection and Intervention (LA EHDI) program targeted quality improvement activities to ensure correct and comprehensive capture of NHS data to reduce the potential for infant loss to follow-up (LTF). All NHS data received from the Louisiana Electronic Events Registry System (LEERS) between January 1, 2018 and September 30, 2018 was reviewed.  Hospital NHS supervisors received notifications for all infants with a blank LEERS NHS tab (missing data). Upon contact with the NHS supervisor, LA EHDI staff reviewed the (a) LEERS data input protocols (data entry within 14 days of discharge), (b) NHS Not Completed Report, and (c) instructions for entering missing screening results or reason for no NHS.

In order to maximize QI efforts, the LA EHDI team participated in technical assistance (TA) coaching calls with the National Center for Hearing Assessment and Management’s (NCHAM) Quality Improvement Advisor.  This TA enabled the LA EHDI team to evaluate processes and develop new strategies to ensure continual quality improvement (CQI) for the program.  A PDSA QI framework was used to test strategies designed to promote active family engagement with the LA EHDI system, aiming to increase the number of at risk newborns who receive a timely diagnosis. The first PDSA cohort targeted families of infants with a NHS result of “further testing needed”, with absent documentation of outpatient follow-up by eight weeks of age.

 

LA EHDI PDSA cycles:

• Cycle 1: Family telephone outreach, messages left for no-answer contact when voice mail was available.
• Cycle 2: Phone contact outcomes documented (unable to contact, no number, not a good number, no voice mail, has appointment, reported rescreened, will make appointment) in LA EHDI-IS.
• Cycle 3: Text messaging component added. Immediately following a no-answer call, a standard text message was transmitted. The text message identified the LA EHDI Program and requested the family to contact the Intervention Outreach Coordinator. 
• Cycle 4: Tested separate tracking of Spanish-speaking families. For identified Spanish speaking families, the bilingual Guide by Your Side (GBYS) Parent Guide was sent a request to contact the family. To date 25 Spanish-speaking families were referred to the bilingual parent guide. 
• Cycle 5: Adjusted the cohort to include families of infants with a newborn hearing screening result of “further testing needed” with no documentation of outpatient follow-up by three weeks of age. Additionally, a second call and second text message was sent two weeks later to families that were unreachable at three weeks. Rationale, calling families prior to the infants’ one-month well-baby check-up enables families to discuss required follow-up with their primary care physician (PCP) and receive assistance with scheduling and referrals.
• Cycle 6: Process for PCP verification added to workflow to ensure LA EHDI fax correspondence was reaching the correct provider. 
• Cycle 7: Added a WIC database phone number search for families without phone contact information recorded on the newborn HS report or a disconnected phone number noted during outreach.
• Cycle 8: Tested text message appointment reminders to families whose infants have an outpatient rescreen appointment scheduled prior to hospital discharge. 

 

Each PDSA cycle resulted in an increased number of family contacts. Following completion of the fourth cycle, the program determined that call timelines required adjustment because rescreening becomes more difficult once infants reach 8 weeks of age, and may require sedation or multiple appointments to complete follow-up testing. This was the rationale for changing the targeted age group for the fifth cycle.  LA EHDI team is working to embed CQI into the fabric of the program to ensure effective/efficient, high quality program activities are available to Louisiana families.

 

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

Provider and Resident Training: Guided by the National Standards for Systems of Care for Children and Youth with Special Health Care Needs and aligned with the Healthy People 2020 agenda, the CSHS program continued its work toward building medical home capacity in Louisiana as part of overall efforts to improve access to and quality of primary care, reproductive health, and specialty clinical services including care coordination. Access to care in a medical home is important to ensuring CYSHCN receive all required services to maximize health outcomes, minimize disability, and promote independence. The CSHS program utilized several strategies to move this work forward.

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. Per the state action plan, CSHS hosted two regional Resource Information Workshops (RIW), one in Hammond (Southeast) and the other in Lake Charles (Southwest) Louisiana.  At the Southeast RIW, CSHS hosted over 100 professionals (educators, nurses, licensed professional counselors and social workers) and over 60 at the Southwest event.  All RIW participants attended continuing education sessions on care coordination delivered by the CSHS Statewide Social Work Consultant, Michelle Duplantier, LCSW-BACS. The presentation included the history and goals of care coordination, practice-level implementation tips, and CC practice assessment tools. The RIW’s also delivered presentations on Community Supports and Services that offered an orientation to services provided by key community programs. Representatives from EarlySteps (Louisiana’s Part C Program), the Department of Children and Family Services, Louisiana Rehabilitation Services, Head Start/Early Head Start, Human Services Districts/Authorities, and the Maternal, Infant and Early Childhood Home Visiting Program participated.  Over 25 public health and community agencies participated in the RIW events as vendors.  

 

CSHS also supported enhanced medical home/care coordination training for LSU New Orleans residents as part of the pediatric development rotation. 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. During FFY 2018, 22 residents completed the development rotation.  

 

Additional trainings on care coordination, medical home, and youth transition were conducted by CSHS Content Experts in FFY 2018.  At LSU School of Nursing ‘s Research Day in New Orleans, a presentation on the CSHS Care Coordination Model was delivered.  A youth health transition training was conducted at the statewide School Based Health Center conference in Baton Rouge, and a presentation on Care Coordination/Community Resources for patients with sickle cell disease was delivered at a State Summit on Sickle Cell Disease. In partnership with LSUHSC Human Development Center, CSHS staff provided didactic sessions using a flipped classroom approach for the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) trainees. LEND sessions covered Title V, youth transition and medical home.  In April of 2018, the CYSHCN RN Program Consultant also presented on a youth transition education-intervention at the Michigan State University Adolescent Health Conference. 

 

CSHS also sponsors webinar trainings to support providers in caring for CYSHCN. Online instruction on care coordination, family centered care, the medical home healthcare delivery model, youth health transition, the basics of navigating special education service system and more are available to healthcare providers across the state through LSU Health Sciences Center’s virtual platform. Since production, these webinars have had limited reach outside of the LSU New Orleans Development Residency Training Program. During FFY 2018, CSHS collaborated with the Louisiana Developmental Disabilities Council around a marketing campaign to promote further dissemination of these trainings. Marketing efforts targeted academic programs for professional healthcare providers. In July (2018) a co-authored letter from the DD Council Executive Director and the CSHS Statewide RN Program Consultant was disseminated to 100 Louisiana nursing, medicine, and social work college faculty. The LSUHSC Human Development Center IT Specialist reported a notable spike in webinar access following outreach activities. Webinar view count for FFY 2018 was 123.  Based on outreach response, increased usage is anticipated in FFY 2019.  

 

Sponsorship of Care Coordinators: Another strategy targeting emerging physicians is CSHS’s sponsorship of care coordinators in five academic clinics. This initiative provided 33 LSU and Tulane University pediatric/family medicine residents as well as 27 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 88% of the population served is publicly insured. Sponsored clinics screen all new pediatric and adolescent patients for special health care needs. During this reporting year, 7,162 children/youth were screened for special health care needs and 10,701 families had access to comprehensive care coordination services. These sponsored care coordinators also support efforts to build provider capacity through engaging clinic staff in the care coordination process and the provision of youth transition services.

Policy Strategies: During FFY 2018, BFH and Medicaid engaged in a consultative process with Johnson Group Consulting on maternal and child health policy services at the request of the Secretary of LDH. The original scope of the consultation made possible by the Heising-Simons Foundation, was to explore Medicaid financing for home visiting in Louisiana.  However, as team members described existing early childhood programs and learned more about national trends in policy, it became clear that there was a broader opportunity to strengthen not only maternal and child health home visiting in Louisiana, but other domains that support a larger spectrum of the health and development of young children between Medicaid and public health. 

 

The consultation workgroup drafted a set of recommendations for Medicaid, building on research, existing systems, and provider capacity.  These recommendations aimed to support optimal perinatal and early childhood health outcomes.  Key targets included high performing pediatric medical homes, developmental screening and interventions to address risks among young children, home visiting for high risk families during pregnancy and early childhood, and early childhood mental health interventions. The Louisiana Medicaid agency provides health coverage for more than 734,000 children. Given the level of poverty among families with children in the state, 60% of all children are covered by Medicaid, including more than half of all CYSHCN.

 

In March of 2018, as Louisiana Medicaid prepared for release of the 2020 contract Request for Proposals (RFP), they sought public input to improve its managed care program. Medicaid released an RFP White Paper ‘Paving the Way to a Healthier Louisiana: Advancing Medicaid Managed Care’ with a request for stakeholder comment. BFH viewed this as an important opportunity to utilize policy strategies to strengthen the health and development of young children. 

An outline summary of the recommendation submitted by BFH:

1. Improve performance of pediatric medical homes
2. Adopt tiered reimbursement for case management
3. Increase use of developmental screening
4. Increase access to developmental supports among young children who have problems and risks identified in developmental and related screening
5. Finance additional home visiting capacity
6. Increase access to early childhood mental health services
7. Adopt a shared measurement and accountability framework for perinatal and early childhood services.

For each of these areas of recommendation, the Title V/Title XIX Workgroup defined specific action steps to be taken in terms of: A) Medicaid policy and procedures, B) RFP and MCO contract language, C) quality improvement activities, and D) potential implementation support from OPH-BFH.

These recommendations were relayed to Medicaid for consideration in the form of both a White Paper and via LDH RFP feedback sessions during the summer of 2018 and the team continued to meet on a monthly basis to continue to learn together and refine strategy.  During the feedback sessions, it became clear that changes to the Medicaid Fee Schedule would be considered via other avenues. Some aspects of the recommendations fit under the scope of the MCO contracts and others would need to be pursued via Medicaid’s other policy proposal and reimbursement request channels. Care coordination, medical home and measurement frameworks were discussed with Medicaid as considerations during the RFP planning process. The RFP was released to the public in February of 2019 and includes medical homes as a value based payment model option, tiered case management will be provided directly by the MCOs and there is potential for new quality measures that will focus on childhood, including developmental screening (to be finalized in the coming months). Given that, along with the conclusion of the Johnson Consulting group consultation period, the team continues to reflect upon and evolve their perinatal and early policy recommendations and implementation strategies.

 

It was decided that Recommendation #4 “Increase Access to Developmental Supports among Young Children with Problems and Risks Identified through Screening” (children who may not qualify for early intervention existing programs) could be supported via a different strategy.  Instead of implementing a new evidence-based program and reimbursement codes to support those children, the strategy has evolved to instead support greater funding so that more children may qualify for Louisiana's Early Intervention System under the Individuals with Disabilities Education Act, Part C.  Another change from the original set of recommendations are the combination and refinement of Recommendations #1 and #2.  Given that care coordination is the foundational element of the medical home and EPSDT is the main benefit for children in Medicaid, the team has worked to define what medical home and continues to learn about what quality EPSDT benefits mean for Louisiana’s infants and children. OPH-BFH has decided to move beyond contracted and reimbursable care coordination specialists and can support greater outcomes through collaboration and technical assistance offerings to the MCOs and their providers. Therefore, Recommendations #1 & 2 has now become a new Recommendation: “Support of medical home, which includes comprehensive pediatric primary care, robust EPSDT services, coordination of all health care services and community referrals, as defined by the AAP.”

 

Recommendations #5 “Finance additional home visiting capacity” and #6 “Increase access to early childhood mental health services” continue to be policy priorities the team believes are important to pursue in Louisiana Medicaid.  In regards to home visiting, the team is currently in the process of creating a decision tree to share with LDH leadership and researching state, federal and MCO methods of finance and contracting to inform how additional home visiting via Nurse Family Partnership could best be financed in Medicaid and also compliment and support the new tiered care management system in the upcoming RFP.  The decision tree paths explored to finance additional home visiting in Medicaid are: 1) Creation of a Targeted Case Management State Plan Amendment or 2) Add home visiting as an existing pregnancy and EPSDT benefit. Presently, increasing access to early childhood mental health services has expanded within to include capacity-building consultation services to healthcare and social service providers around Perinatal, Infant and Early Childhood Mental Health (PIECMH). The main tenets of the policy recommendations are: Identification of emerging and recognizable mental health disorders, developmentally appropriate assessment and treatment for infants, toddlers, preschoolers, and their families; Adequate network of mental health providers trained in evidence-based practices; and access to PIECMH consultation for frontline providers to young children and their families (e.g., primary care, early intervention, child care)

 To expand BFH medical home expertise on the ‘Compliance Team’ Medical Home Certification Program, the Adolescent School Based Health Center Program Manager and the CYSHCN RN Program Consultant attended a two-day Medical Home Facilitator training sponsored by the Bureau of Primary Care and Rural Health. This certification is particularly suited to rural health practices interested in becoming a medical home.  The ‘Compliance Team’ program provides a stepwise pathway to medical home certification after a practice completes the Rural Health Certification.

Other systems work the CYSHCN team supported during FFY 2018 included sponsoring the state-level Young Child Wellness Collaborative’s system mapping activities and participating in the LA EHDI’s Learning Community.  These collaborations afforded the opportunity to bring a CYSHCN perspective to these initiatives, disseminate care coordination resources and TA opportunities available from BFH.

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. Work continued around dissemination of the evidence-based CSHS Care Coordination Toolkit and supporting resources. The Care Coordination Toolkit will be updated FFY 2020. 

CSHS also 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 are disseminated at CSHS workshops/presentations and at provider conferences and are available for download from the CSHS LDH and PartnersforFamilyHealth.org websites.

Historically, CSHS distributed region-specific resource packets to providers across the state through an annual hard copy mail-out. This strategy sought to build provider capacity for comprehensive care coordination and community referrals by providing up-to-date information on programs that serve CYSHCN. During FFY 2018, the CYSHCN team continued efforts to modernize this strategy. An analysis and review of the resource packet was conducted to examine the strengths and weaknesses of the materials as well as explore new resource options and packet distribution methods. Some resources were retired and others revised/updated/rebranded. Once the revised packet is finalized, an internal and external review will be conducted, and new distribution methods piloted. Evaluation activities are planned for the end of FFY 2019.

Care coordination resources were also created to support the developmental screening initiative. The CYSHCN team developed Referral Tip Sheets to support providers with referrals specific to risks identified through screening. Separate tip sheets for developmental milestones, social-emotional development, autism, and social determinants of health/caregiver well-being domains were published for each of the nine LDH regions.  Providers can download these region-specific tip sheets from the PartnersforFamilyHealth.org or LDH webpages.  

 

Family Support Activities: CSHS continued work to support families with navigation of the Medicaid Insurance and Medicaid Waiver services programs. Until 2018, PLs referred families to the Medicaid Special Needs Helpline (SNHL) for assistance with service access, service denials, and claims issues. In July 2018, the BFH Health Systems Strategy Manager coordinated meetings with Medicaid to discuss efficient and timely processes to support families with service access.  Based upon these meetings, it was determined that families would be best served by the helpdesk of their designated MCO plan. Central office staff disseminated this information to the PCs and PLs and the CSHS Regional Resource Guides were updated to reflect MCO helpdesk information.  

 

To capture family feedback around insurance adequacy and satisfaction with services, the CSHS Interaction Linkage Form (ILF) was revised to include insurance usage survey questions.  The ILF form is a document completed by PLs during interactions with families at CSHS clinic visits and community events. In FFY 2018, PLs had 2,404 interactions where they asked about insurance adequacy. At 25% of these encounters, families reported currently inadequate insurance.  CSHS plans to further revise the ILF form to capture additional data around insurance adequacy. 

 

CSHS Safety Net Services: One of the major barriers preventing CYSHCN from receiving all needed specialty care is lack of access to specialty services. To address this issue, Title V continued to support CSHS safety-net clinics in areas of the state where needed subspecialists are not available. CSHS clinics provide access for families who would otherwise have to travel great distances to receive specialty care. CSHS contracts with private physicians to attend clinics, which are located within the LDH-run Parish Health Units (PHU), on a monthly or quarterly basis. Several physicians travel over 400 miles round trip to provide these services.  Nine clinic types were available to patients who met legislated financial and medical eligibility criteria. High volume clinics included orthopedics and neurology. Clinics were staffed by a nurse and in five regions, a social worker. Parent Liaisons rounded out clinic staffing and are contracted through Families Helping Families in each respective region. In 2018, CSHS clinics served 1,322 patients during 2,410 service encounters.

Another identified barrier to services for many CYSHCN and their families is transportation. In Louisiana, many families travel to New Orleans to receive services at Children’s Hospital. This sometimes requires a trip in excess of 300 miles. Medicaid transportation is not always a viable option due to the type of services scheduled, or when multiple children are involved. From October 1, 2017-April 30, 2018, CSHS provided 270 transportation stipends to families requesting assistance with travel to doctor’s appointments and other medically-necessary services. In April 2018, travel stipends were suspended due to a depletion of funds. 

 

In an effort to ensure that as many families receive travel assistance as needed, CSHS program leaders worked with Families Helping Families at the Crossroads, Medicaid, and the Bureau of Family Health Strategy Manager to outline a protocol to ensure families seek transportation assistance through their MCO before requesting assistance through CSHS. This protocol includes contact information for each MCO and a special emphasis on criteria for granting CSHS travel assistance in the event MCO travel assistance is denied or inadequate. Travel stipend parameters were updated for lodging, meals, and mileage reimbursement. Travel stipends were reinstated on September 15, 2018 following a training call with CSHS regional clinic staff and Families Helping Families Directors, which included a review of transportation services provided by each MCO. In FFY 2019, CSHS will closely monitor stipend dissemination to determine if utilization is affected by these changes.

 

Finally, to ensure that financial limitations are not a barrier to specialty medical service access, CSHS remains the payor of last resort for eligible families. Eligible payments include medications, diagnostic imaging, durable medical equipment, speech, physical and/or occupational therapy services. CSHS spent $3143.00 on these services for FFY 2018. The CSHS program serves patients through the age of 21 and covers limited medication costs for qualifying patients with cystic fibrosis throughout adulthood. CSHS continues to benefit from Medicaid expansion since patients are now able to maintain Medicaid benefits into adulthood. Since Medicaid expansion, pharmacy costs demonstrated the greatest decrease in expenditures, with only $191.23 expended FFY 2018.  Prior to Medicaid expansion, CSHS expenditures for pharmacy costs exceeded $19,000 annually. CSHS staff continues to work diligently to ensure families are not only covered by medical insurance, but that insurance benefits are adequate to meet their needs.

 

CSHS Clinic Infrastructure and Quality Improvement: To ensure that CYSHCN receive all needed specialty services, CSHS continued to invest in technology infrastructure and quality improvement. OPH utilizes the Success-EHS system in CSHS, Genetics, and Sickle Cell clinics. To date, the EHR has been instrumental in improving data collection, billing - revenue collection, standardizing processes for workflows and coordination of care. Upgrades to the OPH electronic health record (EHR) system, along with QI efforts around documentation and workflows, continued. The CSHS Uber Super User workgroup continues to meet monthly and reports to the OPH Uber User steering committee on issues identified by clinic staff around EHR utilization. Work to review ICD-10 and CPT code system pick-lists are underway with efforts focused on streamlining options.

Efforts to build IT infrastructure to support clinic based care coordination and youth health transition (YHT) also continued. Long-term goals include supporting integration of a full transition service checklist into adolescent assessments and transitioning care coordination partner practices to electronic quarterly reports. These initiatives will increase a practice’s ability to quantify and monitor care coordination and/or transition services, supporting QI activities and benchmark reporting, while reducing reporting/administrative burden for staff.

 

CSHS collaborated with the Daughters of Charity partner practice and the ‘OPH Super Uber User’ EHR workgroup around embedding YHT documentation fields within their respective EHR systems. In the short term, the CSHS EHR group determined to use existing documentation fields for YHT services and focused on consistent documentation of YHT services.  For next steps, the CSHS EHR group is exploring reportable field options to facilitate YHT service reports.  The CSHS ‘Super Uber User’ group scheduled PL trainings in FFY 2019 on youth transition that include documentation processes.

 

The CYSHCN RN Program Consultant and Epidemiologist met with the Daughters of Charity IT department to review the adolescent EHR well-exam documentation fields and compared these alongside the youth transition checklist. From there, the IT specialist began steps to standardize documentation processes across the organization and obtain documentation preferences from the adolescent healthcare providers for development of EHR system edits.  Before the steps could be fully implemented, staffing turnover resulted Daughters of Charity needing to pause this initiative until the organization is able to hire, train, and rebuild IT department capacity.

 

During FFY 2018, work continued around the development of a standardized quarterly EHR report protocol for the care coordination partner practices. Not only would a standardized EHR report enable Title V to better capture the full impact of care coordination services in partner practices, but it would improve measurement of common benchmarks between practices, reduce care coordinator administrative burden, and maximize the benefit of EHR systems. Early planning meetings were held, and three partner practice sites submitted pilot data.  Due to the multiple administrative layers involved with building IT infrastructure and IT support teams time constraints, the timeline for this strategy will continue through FFY 2020.

 

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

CSHS Parent Support Program: Family-centered care is characterized through family-provider partnerships, coordinated care, and culturally competent care, and is fully embedded within the framework of the medical home. Program sponsored activities targeting this strategy reflect efforts to support families with information and peer support, preparing them to make informed choices, and partner with all members of the health care team.

CSHS has a long-standing commitment to ensuring family-centered care by employing family members as core and ancillary staff. In 2018, CSHS employed two full-time central office Parent Consultants (PCs) to coordinate the parent support program. Their specific titles are Statewide Parent Liaison Consultant and Statewide Parent Training Consultant, and each is a parent of a child with special health care needs. The Statewide Parent Liaison Consultant provides statewide supervision to Parent Liaisons (PL) located in CSHS clinics and at the Family Resource Center (FRC) at Children’s Hospital-New Orleans. The Statewide Parent Training Consultant coordinates and conducts quarterly trainings for PL staff. The two consultants work hand-in-hand to ensure PL staff are equipped to provide resource information to CYSHCN and families within CSHS clinics and during community outreach events.

 

Parent Liaisons are the backbone of the CSHS family support program. Each PL is hired based on their experience as a parent or primary caregiver of a CYSHCN.  The regional CSHS PLs attended all CSHS, Genetics, and Sickle Cell clinics, providing in-person and telephonic peer support. In the direct service clinics, PLs worked in tandem with the clinic staff, identifying community resources to meet the individualized needs of the patients and families served. Resources provided by the PLs help families access support services such as housing, legal rights, recreation, and mental health services.  PLs served 4,362 patients in 2018. In addition to providing peer support and community referrals at CSHS clinics, the PL and PCs invest a great deal of time participating in community events, disseminating key information directly to families and community partners.  During FFY 2018, the CSHS family support staff attended 39 community/health resource events, over 145 conferences/workshops/advisory board meetings, and conducted 45 outreach activities with agencies, providers and hospitals. Through these events, over 3000 CSHS and 5500 FHF informational resources, 800 Medicaid flyers, and over 1000 youth transition resources were disseminated.  Other materials distributed included: recreation resources (535), insurance tools (285), EarlySteps (1507) and Louisiana Rehab Services (255).

 

PCs also participated in central office staff meetings and on NPM/SPM workgroups around medical home and youth transition. They played a vital role, working in tandem with the regional PLs, conducting agency outreach and coordination of RIW logistics. RIW preparation requires securing state agency and community representatives as presenters and vendors and managing on-site coordination of these groups during events.

 

The PCs also support ongoing workforce and professional development by hosting quarterly trainings for regional family support staff in order to keep them current on policy changes, new resources, and best practices. During FFY 2018, three live trainings and one phone conference training were conducted. Trainings covered a variety of topics including: transitions of care, self – advocacy, bullying, effective communication/knowledge sharing, transportation supports, Adverse Childhood Experiences (ACEs), Prevent Child Abuse (PCAL), Louisiana Department of Education’s special education services, sexual abuse, emotional wellness, traumatic brain injury, sheltered employment, community inclusion, legal status/tutorship, IRRF and ILLF data reports.

 

Both PCs work diligently to support BFH-CSHS program activities and also often serve as the liaison for the Lead Abatement Program throughout the state. The PCs represent CSHS on many national and regional committees and advisory boards, such as the AMCHP Family Youth Committee, Region 9 Navigators Affordable Care Act Board, Northshore Family Coalition, Area Health Education Center Family Service Corporation Board, AmeriHealth Caritas Health (Medicaid MCO) Education Advisory Committee, the Region 6 Fetal and Infant Mortality/Child Death Review Committee, Rapides Parish Healthy Initiatives Coalition and the Central Louisiana Children’s Cabinet. The Statewide Parent Liaison Consultant represented Louisiana as the AMCHP family delegate and is an elected Board Member to AMCHP. She will hold the Director at Large position through 2022.

 

Family Resource Center (FRC): The FRC at Children’s Hospital New Orleans (CHNOLA) provides parent-to-parent and youth-to-youth support services to help families access needed community resources for their CYSHCN.  Staff include two parents of CYSHCN (1 PL and 1 social service staff), a youth with a SHCN (youth liaison or YL), and a nurse coordinator. The FRC team interfaces each month with families during 10 outpatient clinics, including Down Syndrome, Spina Bifida, Cerebral Palsy, Muscular Dystrophy, and Spasticity. FRC staff also provided community resource information to families in CHNOLA therapy departments.  In addition to face-to-face interactions with families, information boards throughout the campus are kept current with news on upcoming events, workshops, webinars and other activities for families of CYSHCN.

The FRC provides families with technology access to support linkage with online resources and program information.  The FRC office at CHNOLA includes a resource room where families can use computer and printer equipment to complete online applications and access online tools.  In FFY 2018, FRC staff had 864 encounters with families, providing information and linkage to 1919 identified resource needs.

 

The FRC also supports families through ensuring campus providers have the resources to support community referrals for CYSHCN. The 2018 Annual FRC Resource Fair focused on connecting providers at Children’s Hospital with behavioral health resources. The fair hosted 119 attendees including 78 staff from Children’s Hospital and 41 agency staff.  At the event there were 813 documented encounters between attendees and agency staff.  Of the attendees that completed an evaluation, 86% reported receiving information on a resource ‘new to them’, and 98% said they would discuss behavioral health resources with families.

In addition to the behavioral health event, the FRC hosted an Exceptional Lives Louisiana presentation covering the online statewide resource available to Louisiana families. Exceptional Lives is an independent not-for-profit organization that provides free information to families who have children with disabilities on how to access services and resources. The developers of the Exceptional Lives website provided an overview of the platform and offered tips to providers on helping families engage with the resource. 

 

Peer Support Partnerships Peer Support Partnerships: In addition to the CSHS PL program, the Hearing, Speech and Vision (HSV) program provides parent-to-parent support for children newly identified as deaf or hard of hearing (D/HH) through the LA Hands and Voices Guide by Your Side (GBYS) Program.

Parent Guides with the LA GBYS Program are parents of a D/HH child who have been trained to provide emotional support and share unbiased information and resources. Currently there are 824 families in the Hands and Voices family network, and during this reporting period, 110 new families were linked with a Parent Guide.  

 

Regional Hands and Voices family educational and social events brought together families of newly identified children with families further along on their journey raising children with hearing loss. Family social events including family picnics, coffee chats, gatherings at bowling alleys and parks were attended by 152 family members and professionals.  

 

Parent Guides presented information to 21 families and professionals through two virtual presentations.  Topics included Individualized Education Plans specific for D/HH children, and developing Communication Plans for school age children.  Also, one Parent Guide presented information about LA GBYS to families and professionals during a session at the Statewide Connections Conference held in New Orleans. Parent Guides also distributed information about LA GBYS Program to parents and professionals at the Statewide Deaf Education Summit. Families are also actively engaged in the Louisiana Advisory Council on Infant Hearing.  Advisory Council membership includes a parent of an oral D/HH child and a parent of a D/HH child utilizing total communication.  Additionally the EHDI Learning Community includes two parents of deaf children, and the CYSHCN PCs.

The HSV Program Director, EHDI Program Manager, and the Hands and Voices/GBYS managers collaborated around updates to the Memorandum of Understanding (MOU) between OPH - BFH, EHDI/HSV, and Hands and Voices/GBYS that expired March 31, 2018.   As a result, a new MOU was enacted that began in April 1, 2018 and ran through March 31, 2019.  This MOU outlined new deliverables for the GBYS program which included adding GBYS Parent Guides who are D/HH, development of a D/HH Guide program, documentation of police background checks to LA EHDI for each Parent Guide, new training guidelines, implementing family satisfaction surveys to be utilized for CQI.

To initiate the addition of D/HH Guides to the LA Chapter of the GBYS program, a two day training was held in the fall of 2018.  National Hands and Voices trainers conducted training for potential D/HH Guides, as well as the current GBYS Parent Guides.  The training agenda incorporated: 1) We Are Hands and Voices Guide By Your Side, 2) Supporting Families Without Bias, 3) Role of the Parent Guide, 4) Role of the D/HH Guide, 5) Art of Telling Your Story, 6) Encountering Emotions, 7) Team Bonding,  8) What Do I Say When, 9) Working With Parents, 10) Role Playing First Call, 11) Additional Considerations, 12) Role Play First Visit, 13) Working as a Team, 14) Louisiana EarlySteps, 15) Louisiana School for the Deaf - Parent Pupil Education Program, and 16) Louisiana Implementation. 

 

As a result of the national training, five D/HH Guides were hired, and a Louisiana-specific follow-up training is underway.  The D/HH Guides are beginning to participate in regional activities for families of D/HH children organized by the Parent Pupil Education Program (PPEP), and will work with PPEP to schedule family events in other regions of the state.  Processes are being developed for the Parent Guides and D/HH Guides to provide joint family visits, and procedures for requesting interpreters when needed have been established.  

 

In order to improve program cohesiveness and consistency, monthly virtual meetings for Parent Guides and D/HH Guides are scheduled for the team to share successes and challenges, provide support, and disseminate new information. The initial meeting topics included, 1) strategies to improve timely initial contact, 2) documentation of the reason for no contact with a new referral, and 3) a timeline for minimum family points of contact. 

 

Title V Programmatic Performance and Impact

NPM # 11: Percent of children with and without special health care needs having a medical home. The 2016-2017 NSCH indicates that LA is near the national average in regards to CYSHCN having a medical home (LA 43.6%/US 43.2%).  Because of changes to the medical home survey questions, the 2016-2017 data is considered baseline and cannot be compared to 2011/12 results. 
 

ESM 11.1 - Number of residents trained on medical home, care coordination, and youth health transition: In FFY 2018, 344 residents were trained on medical home, care coordination, and youth health transition.

 

ESM 11.2 - Percent of CSHS direct service clinics provided with PLs: In FFY 2018 100% of CSHS clinics were provided with PLs.

 

SPM # 1: Percent of infants born in Louisiana who screen positive for a condition mandated by Louisiana newborn screening statutes and receive timely diagnosis. In 2018, 100% of screen positive newborns received timely follow up to definitive diagnosis and clinical management.