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 children and youth with special healthcare needs (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 nearly 24% of children ages 1-17 having a special health care need. Of these children with special needs, 94% live within primary care provider shortage areas and 26.5% live under the federal poverty level (FPL).  Additionally, the 2017-2018 National Survey of Children’s Health reveals that Louisiana has the highest percentage of children age 3-17 years with a mental, emotional, developmental or behavioral (MEDB) problem in the nation. The entire state of Louisiana is a designated mental health provider shortage area, and 32.6% of children with a MEDB problem live under the FPL. Furthermore, only 17.6% of CYSHCN in Louisiana receive care in a well-functioning system, with just over half (50.8%) of CYSHCN receiving coordinated, ongoing, comprehensive care within a medical home.1

Summary and Reflection of CYSHCN Efforts

Early detection of special health care needs and timely linkage to treatment: 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. During the 2016-2020 cycle, a core Title V approach to enhance systems of care for CYSHCN was to ensure early detection of special health care needs and timely linkage to treatment. A key strategy was to ensure high performing newborn screening programs for genetic conditions and early hearing loss.

Newborn Genetics Screening and Follow-up: In 2019, BFH Genetics and Early Hearing Detection and Intervention (EHDI) Programs tested 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 59,088 children born in Louisiana in 2019, 58,316 (98.7%) 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, Office of Public Health (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 2019, 2,472 infants had a presumptive positive test result, and of those,138 infants had a confirmed diagnosis of a genetic disease. Sickle cell disease and congenital hypothyroidism were the two most often diagnosed heritable conditions.

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.

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.

A strategy for the 2016-2020 state action plan cycle was 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. 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 grant from the Centers for Disease Control and Prevention (CDC) 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. 

Early Hearing Loss Screening and Follow-up: 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.

In FFY 2019, BFH updated 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 communications staff developed a document to provide families with information regarding communication options and resources.

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, by linking them with 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.

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 were contracted through local Families Helping Families organizations in each respective region. In FFY 2019, CSHS clinics served 1,192 patients during 2,151 service encounters.

Another common 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. 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. In FFY 2019, CSHS provided transportation stipends to 180 families requesting assistance with travel to doctor’s appointments and other medically-necessary services.

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. 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 $137.26 expended in FFY 2019.  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.

Genetics Clinics and Direct/Support Services: As mentioned above, 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. Genetics clinics operate out of OPH PHUs and provide genetic testing, counseling, education, treatment, and referral to individuals and families who have or are at risk for genetic disorders. Title V also subsidizes special formula to patients with genetic metabolic disorders who are in need and who require diet modification.

Sickle Cell Services and Foundations: Each year, approximately 80 infants are born with Sickle Cell Disease (SCD) in Louisiana.  It is estimated that there are approximately 3000 children and adults living with SCD in the state.  In the past, the life expectancy for patients living with SCD was not much past the twenties.  However, with improved identification and treatment, the life expectancy has greatly improved and patients can live well into their 60s with the proper resources.

In addition to funding safety net Sickle Cell Clinics, Title V funding supports Sickle Cell Foundations in all regions of 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. The BFH Genetic Diseases Program provides resources and information on how individuals diagnosed with sickle cell can receive assistance and care through the Sickle Cell Foundations and BFH Genetics Clinics around the state.

CSHS Clinic Infrastructure and Quality Improvement: To ensure that CYSHCN attending Title V clinics received the highest standard of care, Title V continued to invest in technology infrastructure and clinical quality improvement. Through the end of FFY 2019, OPH utilized the Success-EHS system in CSHS, Genetics, and Sickle Cell clinics. During the 2016-2020 cycle, the EHR has been instrumental in improving data collection, billing - revenue collection, standardizing processes for workflows and coordination of care. Title V CSHS staff continuously managed upgrades to the EHR and QI efforts around documentation and workflows. Title V CSHS staff also maintained an active Uber Super User workgroup that continued to meet monthly and report to the OPH Uber User steering committee on issues identified by clinic staff around EHR utilization.

In FFY 2019, OPH learned that Success EHR would no longer be supported, so implementation for a new EHR system, Intergy, began October 2019. The BFH Statewide Social Work Consultant and Statewide Pediatric Nurse Consultant led the EHR training and implementation efforts for all CSHS, Genetics, and Sickle Cell clinics around the state.

Promoting Medical Home and Youth Health Transition: In FFY 2019, 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. During FFY 2019, 22 residents completed the development rotation. 

ESM 11.1: Number of health care providers trained on Medical Home, Care Coordination and Youth Health Transition

Family Support Services: 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. Historical Title V strategies to promote family-centered care focused on funding peer support staff to provide families with resources and information, prepare them to make informed choices, and partner with all members of the health care team. In 2019, CSHS employed two full-time central office Parent Consultants (PCs) to coordinate the parent support program, as well as Parent Liaisons (PL) and a Youth Liaison (YL) to provide direct peer support in Title V safety-net clinics and the Family Resource Center (FRC) at Children’s Hospital-New Orleans. Each member of the family support staff was hired based on their experience as a parent or primary caregiver of a CYSHCN or as an individual with special health care needs.

In FFY 2019, 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. In addition to providing peer support and community referrals at CSHS clinics, the PL and PCs participated in community events, disseminating key information directly to families and community partners.

Sponsorship of Care Coordinators: Another strategy targeting emerging physicians is CSHS’s sponsorship of care coordinators in five academic clinics. This initiative provided 68 Louisiana State University (LSU) and Tulane University pediatric/family medicine residents as well as 20 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. During FFY 2019, 7561 children/youth were screened for special health care needs and 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.

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 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 began 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. During FFY 2019, some resources were retired and others revised, updated, or rebranded. An internal and external review began, and a plan to pilot and evaluate a new distribution method was developed.

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.