Children and Youth with Special Health Care Needs Annual Report

The Title V MCH Block Grant, through the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), requires at least 30% of Title V funding to be targeted to CYSHCN. 

According to HRSA, CYSHCN are defined as: "Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally". CYSHCN are a diverse group with wide-ranging health concerns, such as chronic and acute conditions, including emotional and behavioral health. 

The CYSHCN Program provides resources and support to community agencies serving children from birth to age 21. The CYSHCN Program successfully moved away from a direct services approach to focus on funding various community programs bridging service gaps, linking families to appropriate resources and providers. This includes developing strategies to better serve children and families through a network of federal, state, and local community and family-based partners.

The CYSHCN Director manages the MCAH Section of the Nevada DPBH. Section programs include the Title V MCH Program, RPE, AIM, MMRC, PREP, SRAE, PRAMS, EHDI, and MIECHV. The Director also uses a systems-building strategy by developing relationships with outside CYSHCN entities, attending innovative training and annual conferences, and participating in community and family-led coalitions and committees. Examples include the NGCDD and the Nevada Newborn Screening Advisory Committee (NSAC), Childhood Sexual Assault Prevention Advisory Board, Nevada HRSA Mental Health Evaluation Committee, fatality reviews, and the MHP Advisory Committee. The CYSHCN Program Coordinator works closely with the Director to evaluate if program activities are achieving expectations and to modify these goals when appropriate.

The CYSHCN Program Coordinator participates in the Nevada MCH Coalition, Nevada State Team of the Mountain States Regional Genetics Network, Statewide Children's Mental Health Consortia, and the Nevada Early Intervention Interagency Coordinating Council through the Individuals with Disabilities Education Improvement Act of 2004 (IDEA) Part C Office.

To improve CYSHCN health outcomes, the Title V MCH Program selected NPM 11, NPM 15, and NPM 12. The Title V MCH Program sought to increase:

1. The percent of children with special health care needs, ages 0 through 17, who have a medical home (NPM 11).
2. The percent of children, ages 0 through 17, who are continuously and adequately insured (NPM 15).
3. The percent of adolescents with special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care (NPM 12).

Health outcomes are anticipated to improve when children and youth have access to a medical home, are adequately insured, and successfully transitioned from pediatric to adult health care. Program activities and successes on these efforts are highlighted in the report and supplementary activities that support CYSHCN and their families in other areas.

Medical Home

The Title V MCH Program sought to increase the percent of children with special health care needs, ages 0 through 17, who have a medical home (NPM 11). According to the NSCH 2018-2019 report, 30.3% of Nevadan children with special health care needs, ages 0 through 17 years, have a medical home compared to 42.3% nationwide.

Most chronic conditions are uncommon or rare - for many diagnoses, primary care physicians are likely to have only one, or a few, patients. However, the cumulative prevalence of chronic conditions is substantial.  According to the NSCH 15% of children meet the criteria for classification as CYSHCN in Nevada. Through the Medical Home Model, effective care coordination provides substantial value for CYSHCN, their families, and their clinicians and requires knowledge of their conditions, available resources, and relevant service providers. However, it is impossible to maintain enough current knowledge of medical information and community resources to provide high-quality primary care for each of these conditions. From Medical Home Model strategies, it is known families of CYSHCN desire more information about raising a child with special health care needs, about their condition(s), and about how to manage their care and navigate the health care system. Families are motivated and may have more time than clinicians to devote to learning about their child's condition and finding resources. Families will learn to understand relatively technical language and be better able to understand and communicate with professionals. Numerous other professionals (therapists, dentists, care coordinators, educators, pediatric and adult subspecialists, etc.) could also benefit from information about various aspects of caring for CYSHCN. Physicians and families sharing information and working together as partners in the Medical Home model will improve outcomes for CYSHCN.

The Title V MCH Program, in conjunction with the University of Utah Department of Pediatrics, promotes the MHP to governmental and community partners at the local, regional, and state levels to improve medical home access in Nevada for CYSHCN. The MHP is an easy-to-use conduit to connect children with and without special health care needs, their families/caregivers, and providers to health and social service resources and is also available in Spanish. To increase awareness of the MHP, each Title V MCH-funded partner is required to promote the MHP. CCHHS promoted the MHP through digital clinic signage and Facebook. Social media MHP messages reached 2,124 individuals with 21 user engagements. Promotion of the MHP is a condition of funding for Title V MCH subawardees.

Title V MCH awarded funding to DP Video to create and arrange a month-long social media ad campaign promoting the MHP. Video posts on Facebook and Twitter promoted the MHP to providers and other health professionals, as well as families and CYSHCN advocates in both English and Spanish. These campaigns highlighted the need for inclusion in care coordination throughout Nevada and how the MHP can be used to benefit current efforts whether through modules like gold-standard information concerning diagnoses or conditions, tips for families navigating the system of care, or the service directory of over 3,350 resources. Twelve video ads on Twitter resulted in 267,988 media impressions. Six video ads on Facebook and Instagram resulted in 206,128 media impressions and 166,826 views by 86,576 unique users.

Medical Home Portal

Title V MCH funds the MHP in conjunction with the University of Utah Department of Pediatrics (UUDP) to serve CYSHCN by addressing clinicians' information and resource access needs, care coordinators, other healthcare professionals, educators, families, and patients. The MHP's vision is for all CYSHCN and their families to achieve the best possible outcomes for their health, well-being, and success. The MHP's mission is to assist and support professionals and families using the Medical Home model to care and advocate for CYSHCN by providing reliable and helpful information about CYSHCN conditions, care, and valuable local and national services and resources. The MHP's long-range goal is to improve outcomes for CYSHCN and their families by enhancing the availability and quality of healthcare, related services, and care coordination.

Title V MCH staff continued to promote the MHP, in partnership with the University of Utah Department of Pediatrics, to increase access to a medical home for children and youth living in Nevada. Two social media campaigns were conducted using Title V MCH funds. DP Video promoted the MHP through social media on the Nevada Wellness social media sites (Facebook, Instagram, and Twitter), targeting providers, parents, and caregivers of CYSHCN. All posts signified Nevada races and ethnicities, met National CLAS guidelines, included descriptors for visually impaired viewers, and aired in Spanish and English.

The campaigns highlighted the need for inclusion in care coordination throughout Nevada and how the MHP can benefit current efforts, whether through modules like gold-standard information concerning diagnoses or conditions, tips for families navigating the system of care, or the service directory of over 3,350 resources. The ad campaign allowed for enhanced boosting of sponsored ads, which resulted in a notable mention from other states using the MHP. The animated video ad campaigns on Twitter resulted in 157,971 media impressions, and Facebook content led to 349,631 views by 6,144 unique users clicking on links for further information. The 12 boosted social media campaigns on Twitter resulted in 267,988 media impressions, and Facebook social media reached 86,576 individuals. A smaller Facebook campaign promoted by CCHHS in Northern Nevada, reached 4,188 individuals with 124 engaged users.

The MHP integrates with Nevada 211, the state’s Information and Resource (IR) platform, as the main source of referral information for community and professional service providers serving Nevada’s CYSHCN population. Data from Nevada 211 is exported quarterly for presentation on the MHP. Community and professional service providers can also import their referral information directly to the MHP. Usage of the MHP is evaluated utilizing Google Analytics, where the number of website views by page and unique users are quantified and reported monthly.

For FFY 2020, there were 28,657 MHP unique users (compared to 5,961 unique users in FFY 2019) and 64,132 website views (compared to 12,390 website views in FFY 2019). As of December 2020, the MHP contains:

• Over 500 pages of content and resources, including
  • 55 "Diagnosis Modules" addressing the comprehensive primary care of those conditions;
  • 38 Newborn Disorder pages addressing primary care response to notification of abnormal results of newborn screening for those conditions;
• Over 3,100 links to other reliable and valuable websites or downloadable, including components on Sickle Cell Disease (SCD) screening and family resources added by the CYSHCN Program Coordinator;
• Over 2,200 citations of scientific and other expert literature to provide users with the evidence behind recommendations or to explore topics in greater depth;
• Over 3,350 service listings in the directory for CYSHCN and their families in Nevada;
• New nationwide service directory, including telehealth resources accessible to families living in rural and frontier areas. Nevada’s CYSHCN Program was the first MHP partner to launch this new feature.

Title V MCH Program-funded partners promoted the MHP through their scopes of work and promotional materials were provided to both funded and non-funded partners to increase awareness. Materials included teddy bears, med-spoons, sippy cups, pens, and bookmarks showcasing the MHP logo and website address. The Title V MCH Program also launched social media campaigns on Facebook and Twitter. Social media posts were inclusive of age, gender, race/ethnicity, and disability through carefully chosen images and text. In FFY 2020, there was a 416% increase in website views and 381% increase in unique users compared to FFY 2019.

The MHP expanded to include nationwide resources. Visitors to the site can now search not only UUDP partner state directories (to include Idaho, Montana, New Mexico, Rhode Island, and Utah), but also a nationwide directory of resources and services which may not be available in Nevada or those mainly provided online or through phone consultations.

Adequate Insurance

The Title V MCH Program sought to increase the percent of children, ages 0 through 17, who are continuously and adequately insured (NPM 15). According to the NSCH 2018-2019 report, 62.4% of Nevadan children, ages 0 through 17, were continuously and adequately insured compared to 66.8% nationwide. To improve the percent of children who are adequately insured, all AHWP and CYSHCN Program partners provide insurance application assistance in English and Spanish, referrals to Medicaid and other social service programs, and informational materials on topics such as eligibility criteria and coverage of preventive services. Future efforts within the CYSHCN Program will continue these services while also focusing on increasing collaboration with DHCFP (agency includes NV Medicaid, EPSDT, and Katie Beckett Programs) and DWSS to improve referrals and thereby, continuous and adequate insurance coverage for Nevadan children.

 

 

Health Care Transition

According to the NSCH 2018-2019 report, the percent of CYSHCN in Nevada who received services necessary to transition to adult health care decreased from 10.3% in 2017-2018 to 8.3%. Meanwhile, the national average increased from 18.9% to 22.9%. Thus, Title V MCH selected NPM 12: percent of adolescents with and without special health care needs, ages 12 – 17 (y.o), who received services necessary to make transitions to adult health care, as a new priority measure to align with Title V MCH staff's desire to empower youth with and without special health care needs to engage in their health care as they transition into adulthood. Health care transition education engages and allows adolescents and young adults to advocate for themselves by breaking down health and wellness, insurance coverage, and self-advocacy in a way they can easily understand.

The CYSHCN and AHWP Programs initiated a new collaborative partnership with the Title V MCH-funded partner DP Video Productions for a social media campaign on health care transition and health literacy. DP Video arranged for the promotional efforts of health care transition video posts on Facebook, Instagram, and Twitter, using the state-operated Nevada Wellness website. DP Video conducted a month-long social media campaign displaying videos and messages promoting the concept of youth learning how to advocate for themselves instead of relying on parents/caregivers to meet all these needs. English and Spanish messages, representing Nevada's race/ethnic and special needs populations, contained video descriptors for the visually impaired. The campaign met the targeted audience of adolescents and families with teens. Facebook led to 133,154 views, 275,751 media impressions, and 50,640 engaged users, while six video ads were displayed on Twitter, resulting in 500,633 media impressions.

 

Nevada Center for Excellence in Disabilities

 

The CYSHCN Program and AHWP continued collaborating with the Title V MCH-funded partner, NCED, to expand resources on health care transition and health literacy. This partnership aims to improve the transition from pediatric to adult health care using new and innovative strategies for health professionals, youth, and families.

 

The Title V MCH Program funded health transition efforts with NCED in the College of Education at UNR, which serves as Nevada's University Center for Excellence in Developmental Disabilities (UCEDD). The work of UCEDD's is to accomplish a shared vision that foresees a nation where all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and community inclusion are critical components of this vision. The mission of the NCED is to cooperatively work with consumers, agencies, and programs to assist Nevadans with disabilities of all ages to be independent and productive citizens who are included in their communities. This mission is accomplished by providing interdisciplinary training, offering model exemplary services, conducting interdisciplinary evaluations, disseminating information on developmental disabilities and service options, providing technical assistance, and conducting relevant research and evaluation studies.

 

Using Title V MCH funds, NCED conducted fifteen trainings to 594 professionals and high school/college staff working with parents and students with special health care needs. All trainings disseminated resources to improve health care education and integration for youth and young adults using no-cost one-page information sheets through Got Transition www.GotTransition.org. The handouts educate young people and their parents/caregivers about the steps necessary to navigate the transition from the pediatric to the adult health care system. The trainings included resources to promote the Medical Home and the MHP. Trainings were offered to those affiliated with UNR, Washoe County School District, NDE, and some rural school districts. COVID-19 resulted in virtual formats for training after March 15, 2020. Unfortunately, the pandemic delayed several planned trainings in rural regions; however, several were conducted later in the reporting year. 

NCED made inquiries and learned some school districts had health care transition policies. Unfortunately, school staff are not mandated to include health care transition as part of their transition policies for CYSHCNs outlined through the Individuals with Disabilities Education Act and the Nevada Administrative Code built into all Individualized Educational Plan (IEP) documents. Thus, continued education for staff and students is deemed essential, so youth can learn to engage in their health care transition into adulthood.  

NCED staff attended three Healthcare Transition Learning Group workshops to receive further resources to share with professionals and families. These sessions proved valuable to enhance staff knowledge and provide additional training content.

 

In FFY21, NCED will enhance its content for health care transition training, and provider reach to align with activities focused on NPM 12: percent of adolescents with and without special health care needs, ages 12 – 17 (y.o.), who received services necessary to make transitions to adult health care. Discussions began with NCED to conduct six Project ECHO online trainings on pediatric to adult health care transition to professionals serving youth with and without special health care needs using the Got Transition www.GotTransition.org Six-Core Elements of Health Care Transition. The courses will share each core element, related resources, and include case-based discussions.

 

COVID-19 Efforts

COVID-19 guidelines requiring masks in public can pose communication barriers for individuals who are deaf and hard of hearing (D/HH). Title V MCH funded the purchase of face masks, with a clear window, to six school districts and two partners working with children or parents who are D/HH. The transparent section of the mask allows the wearer's lips to be visible, making lip-reading and the speaker's facial expressions possible.

 

The CYSHCN Director participated in population specific COVID-19 workgroups.

 

AMCHP awarded the Title V MCH Program the AMCHP CARES ACT Telehealth Grant to support CYSHCN with access to health care through technical supports.

 

MCAH staff added COVID-19 MCH-population-related content into the DPBH website http://dpbh.nv.gov/Programs/TitleV/TitleV-Home/. Materials contained Nevada’s response to the pandemic, as well as information and resources targeting CYSHCNs, in addition to all other populations served by the award. Identified links sent viewers to the CDC COVID-19 resources in American Sign Language via YouTube and Spanish language content. The CDC materials and placement of the links were shared widely with funded partners and community members. The statewide MCH Coalition and PCO disseminated the materials through listservs. 

 

In FFY 21, Title V MCH requested all funded partners promote the DPBH awarded Nevada Resilience Project, helping families and individuals experiencing struggles and challenges due to COVID-19. Bilingual ambassadors provide education, information, counseling, and resource navigation over the phone, through text and video chat, and face-to-face while promoting resilience, healthy coping, and empowerment. Additionally, state staff shared the launch of two Nevada 211 mobile apps to help Nevadans connect with needed resources in response to the pandemic. The Nevada 211 Youth app complements the initial one for individuals and families. It specifically helps young people locate services and resources such as health care, crisis support, employment services, food pantry locations, and emergency housing programs.

 

Family TIES of Nevada

Family TIES of Nevada (FTON) is Nevada’s Family Voices representative and Family-to-Family Healthcare Information and Education Center, which provides culturally competent support and information to CYSHCN and their families. FTON, a Title V MCH funded partner, provides a bilingual CYSHCN toll-free hotline and assistance to family-centered care for individuals living with disabilities or special health care needs.

The Title V MCH Program understands CYSHCN and their families’ journeys have value and offer essential knowledge, hope, and inspiration to others, and inform programmatic efforts. FTON engages CYSHCN communities by fostering peer support, mutual growth, and resilience in families and programs. The agency applies evidence-based practices to ensure consistency and quality throughout the parent-to-parent network, utilizing leadership, integrity, and partnership to build capacity and sustainability statewide.

FTON team members participate in various outreach events and committee meetings to distribute resources to families and stay knowledgeable on emerging topics related to CYSHCN. FTON partners with nonprofits to actively communicate the mission of providing family-centered care for individuals living with disabilities or special health care needs and their families. FTON continues to participate in health promotion campaigns supported by Immunize Nevada, Healthy Nevada, Cribs for Kids, Respite and Volunteer Experiences (RAVE), and NEIS. Of these organizations, Cribs for Kids and Immunize Nevada receive Title V MCH funding through our Maternal and Infant Program (MIP) to emphasize Safe Sleep activities and childhood immunizations.

FTON made extensive referrals to the MHP, the FTON website, NEIS, and other specialized information sources. Eligibility assistance for Medicaid, Supplemental Security Income (SSI), affordable housing, and Katie Beckett programs was provided to increase continuous and adequate insurance coverage among CYSHCN. Transportation services were made available to rural and frontier families so their children could attend clinical appointments and obtain other supplementary needs.

Care coordination and case management were provided to CYSHCN and their families receiving clinical and enabling services from Title V MCH-funded partners, the Northern Nevada Cleft Palate Clinic (NNCPC), and UNLV. Care coordination involved organized child activities and shared information among the family and other health professionals to achieve safer and more effective care. Case management was provided to children with complex medical needs (physical, mental, and emotional) and families living in rural and frontier regions. Translation and interpretation services were offered at NNCPC and UNLV. Overall, FTON has identified a need for translation services among CYSHCN and is considering certifying bilingual team members to serve in this capacity. FTON is committed to improving referral systems and community partnerships to increase access to care for CYSHCN and their families in Nevada.

Due to COVID-19, FTON team members were unable to attended trainings after March 2020.  Prior to the COVID-19 outbreak, team members were able to attend some outreach events and committee meetings to present information to families of CYSHCN as described below. In addition, FTON partnered with nonprofits to actively communicate the mission of providing family-centered care for individuals living with disabilities or special health care needs and their families. FTON distributed over 4,682 brochures and informational resources at outreach events and nonprofit partnership events. Also, FTON participated in various health promotion campaigns with Immunize Nevada, Healthy Nevada, Cribs for Kids, Lyft, RAVE, NEIS, Reno Fire Department, and Toys for Tots.

FTON made over 1,500 referrals to the MHP, the FTON website, and other specialized information resources. Care coordination and case management services were offered to individuals attending Northern Nevada Cleft Palate Clinic (NNCPC) in both northern and southern Nevada, but this service was also limited due to COVID-19.

 

The FTON Executive Director continued participation with the Nevada State Team of the Mountain States Regional Genetics Network by serving as one of the team’s co-leaders.

 

Prior to March 2020, FTON routinely attended community events to increase awareness of the organization and the resources offered, including: the Washoe County School District Summit, NEIS, Turkey Trot, Chevy Classic Car Summer Salute, RAVE Trunk or Treat, and the Caregivers Coalition prior.

 

Emergency Preparedness and Response Action Learning Collaborative

MCAH staff participated in the Emergency Preparedness and Response Action Learning Collaborative (EPR-ALC).  The EPR-ALC is a collaboration between the CDC and AMCHP to provide technical assistance to states to aid in developing or enhancing the integration of MCH populations in their EPR plans.  Title V MCH staff are working with the Public Health Emergency Preparedness (PHEP) Program and the LHAs to meet ALC action items.  PHEP is drafting Nevada’s first Pediatric Medical Surge Annex and is receiving support from MCAH staff.  The plans address access and functional needs, behavioral health, newborn screening, coordination of services with WIC and other MCAH components during a medical surge event. 

Multiple emergency response annexes or components may need to be activated simultaneously in order to thoroughly address the needs of those affected by a disaster.  For example, pediatric burn patients, neonates, neonatal intensive care unit (NICU), pediatric intensive care unit (PICU), and CYSHCN. 

Adaptive and Inclusive Physical Activity

The CYSHCN Program and AHWP participated in the Association of State Public Health Nutritionists (ASPHN) Children’s Healthy Weight CoIIN to support Title V MCH programs to promote nutrition, physical activity and breastfeeding through collaborative learning and quality improvement practices. Title V MCH staff, in partnership with our state family-led organization, FTON, sought to increase physical activity in the CYSHCN population.

Title V MCH staff identified a bilingual infographic from the National Center on Health, Physical Activity, and Disability. Staff then contacted parks and recreation departments (where available) across Nevada to identify inclusive playgrounds and programs, as well as locate local and online businesses providing adaptive sporting equipment to develop a resource guide for families with CYSHCN. A link to both guides, accessed through the MHP, was posted on the back of the infographic. FTON disseminated the infographics to their client population and the information was also posted on the MHP site. When developing the list, Title V MCH staff identified rural and frontier counties needing physical activity equipment. Local agencies were then directed to federal and private funding opportunities for playground development and adaptive equipment.

 

Northern Nevada Cleft Palate Clinic (NNCPC)

 

As a collaboration of NEIS and the UNRSOM, Title V MCH offers financial support to the Northern Nevada Cleft Palate Clinic (NNCPC) held in Reno, Nevada. Each clinic has a dedicated multidisciplinary team committed to caring for and treating children with cleft lip and palate and other craniofacial impacts using a grand rounds style where each family receives an individualized case review. The NNCPC is housed within the Department of Speech Pathology and Audiology at UNR. The NNCPC is a cooperative effort between Nevada's DHHS, DPBH, and community healthcare professionals. The NNCPC offers online referral resources and collaborates with Family TIES of Nevada to provide a Spanish language interpreter for Spanish-speaking families. The NNCPC examines children with cleft palate or other craniofacial disorders involving the head, face, and mouth. Each patient and their family are taught how to care for the specific cleft palate or craniofacial disorder and what to expect. Speech therapy is offered when necessary.

 

COVID-19 restricted access to services from March 2020 until the end of the subaward period.  Title V MCH did not renew the subaward after June 30, 2020. 

 

University Center for Autism and Neurodevelopment (UCAN)

The University Center for Autism and Neurodevelopment (UCAN) in the Department of Speech Pathology and Audiology in the UNRSOM is a multi-disciplinary team of professionals concerned with autism and neurodevelopmental disorders in children. The purposes of the UCAN Assessment Team are to provide diagnostic evaluation for children in need and improve differentiation between autism and other neurodevelopmental disorders. The Team is a diverse group of professionals from different disciplines and agencies throughout Northern Nevada comprised of child psychiatrists, child psychologists, school psychologists, an occupational therapist, marriage and family therapist, speech language pathologists, and a developmental specialist. The Team provides three extensive assessments per month, as well as follow-up to help families access recommended treatments.

 

UCAN is associated with the Nevada Learn the Signs. Act Early (NvLTSAE) Program, which is a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) project. The purpose of the LEND training project is to improve the health of CYSHCN. This is accomplished by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by insuring high levels of interdisciplinary clinical competence. LEND programs across the nation work together to address issues of importance to CYSHCN and their families, exchange best practices, and develop shared products.

 

UCAN attended to a total of 33 children and families who received guidance and assistance in obtaining necessary services. In conjunction with the NvLTSAE Program, UCAN collaborated with several state, private, and public agencies to disseminate CDC Milestone Moments booklets adapted for Nevada, which included referral information for parents.

 

The Department of Speech Pathology & Audiology at UNR had no cleft palate patients, in clinic, from 4/1/20 thru 6/30/20 due to mandatory clinic closure and the extensive safety precautions and requirements for the re-opening process during the COVID19 pandemic.

 

Mountain States Regional Genetics Network

The CYSHCN Program staff participate in the Mountain States Regional Genetics Network (MSRGN) as part of the Nevada State Team. The MSRGN is a HRSA-funded project which spans eight states, including Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah, and Wyoming. The MSRGN ensures individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise through facilitating a network of genetics clinics, primary care practices, consumer advocates, and state health department resources. The MSRGN facilitates regional networking, encourages diverse populations, and supports activities to inform quality improvement and access for underserved populations in the clinical genetics health care delivery systems. These collaborative efforts bring together clinicians, public health professionals, and affected families to fulfill the MSGRN mission. The Nevada State Team implemented an ECHO series on genetic service delivery in primary care settings.  The ECHO series is designed to better inform medical professionals on newborn screenings, genetic evaluations for developmental delays and autistic behaviors, and caring for a child with multiple special health care needs. Upon identifying a gap regarding genetic counseling, the group decided to implement genetic “pop-ups,” or impromptu, casual discussion sessions between experts and community members on the advantages of genetic counseling for CYSHCN.

Pediatric Mental Health Care Access Program

To support CYSHCN Program goals specific to mental health, the CYSHCN Director and Program Coordinator continue to participate in the Nevada DCFS HRSA Pediatric Mental Health Care Access Program (PMHCAP). PMHCAP uses telehealth strategies such as Mobile Crisis Response teams to expand mental health services for children. The program goals are to:

1. Promote behavioral health integration in pediatric primary care by supporting the development of statewide pediatric mental health telehealth and telephone access program.
2. Provide training and education on the use of evidence-based, culturally and linguistically appropriate telehealth protocols to support the treatment of children and adolescents with behavioral disorders.
3. And serve as a resource for pediatric primary care providers seeing children and adolescents including but not limited to pediatricians, family physicians, nurse practitioners, physician assistants, and case coordinators.

Sexual Assault Prevention in Individuals with Developmental Disabilities

Title V MCH continued funding 0.25 FTE of the full-time MCAH RPE Program Coordinator position. The CYSHCN and RPE programs, in conjunction with the NCEDSV and CDC PHHSBG, continue to provide cross-training workshops for the prevention of relationship abuse in young adults with developmental disabilities to communities in Nevada. NCEDSV also continues developing resources and collecting data regarding sexual violence against individuals with disabilities nationwide. Nationwide, a lack of resources and data have been identified regarding sexual violence against individuals with disabilities. Thus, NCEDSV developed infographics to increase awareness of local community-based organizations offering sexual assault prevention and victim services resources. NCEDSV is also committed to providing training to participants with at least five available community resources, including links to the MHP at https://nv.medicalhomeportal.org/, and Nevada 211 at https://www.nevada211.org/. The resources promote and increase access for both providers and families to necessary services for children and youth with and without special health care needs. NCEDSV built a web page listing resources, policies, and myths regarding sexual violence geared towards those who are developmentally delayed, parents, caregivers, self-advocates, and service providers. 

Sickle Cell Disease Regulation and Registry

CYSHCN staff participated in policy and implementation planning in relation to new statutory language passed in 2019 related to development of a sickle cell registry and resources for CYSHCN and their families. Assembly Bill (AB) 254 (https://www.leg.state.nv.us/App/NELIS/REL/80th2019/Bill/6459/Text) of Nevada’s 80th Legislative Session requires Medicaid to cover certain supplements, prescription drugs, and services for the treatment of SCD and its variants, and authorization of a prescription of certain controlled substances for the treatment of acute pain caused by SCD and its variants for a longer period than otherwise allowed. The CYSHCN Program worked with the Nevada Newborn Screening Program, specialty providers, and various family centered SCD advocacy organizations to also develop a letter focused on improving parental screening of SCD and sickle cell trait (SCT) statewide. This resource will be mailed to the family’s primary care provider in the event of a presumptive positive result of SCD/SCT; the letter encourages parental screening of SCT/SCT as a family planning measure and informs the family of available resources in their area.

Nevada’s Sickle Cell Registry (SCR) was also developed through AB 254. The SCR is designed to collect information on the number of newly diagnosed cases of SCD and its variants (incidence) and the number of cases living in Nevada (prevalence).

Data sources for the registry include:

• Reports from health care facilities, providers of healthcare, and medical laboratories
• State newborn screening program
• Administrative claims data from NV Medicaid
• Hospital in-patient and emergency room discharge data

Critical Congenital Heart Disease Registry

The CYSHCN Program manages the CCHD Registry, which ensures Nevada-born infants are screened for CCHD and those diagnosed with CCHD receive timely and appropriate medical care. The CYSHCN Program works in partnership with Nevada birthing hospitals, the NHA, and the American Heart Association (AHA) to provide technical assistance, ensure all Nevada birthing hospitals are reporting, and produce an annual CCHD report. Title V MCH staff within the CYSHCN Program and MIP are currently exploring the possibility of partnering with state and regional organizations representing Certified Nurse Midwives (CNMs) to include their newborn screenings into the CCHD Registry. The EHDI Program includes CNMs in their data collection and if the CCHD Registry can accommodate this change, there may be an increase in reportable coverage of CCHD screenings.

Congenital heart defects (CHDs) are malformations of the heart or major blood vessels and the most common type of birth defect (CDC, 2018a). In the US, about 40,000 births per year are affected by CHDs, accounting for 4.2% of all infant deaths (AHA, 2019; CDC, 2018b). About 25% of infants who have CHDs will be diagnosed with CCHD (CDC, 2018c). CCHD is a life-threatening condition requiring surgical intervention within the first year of life (CDC, 2018c). Fortunately, pulse oximetry screening increases the chances for early diagnosis and detection of CCHD when coupled with routine newborn screening practices (CDC, 2018c; AAP, 2019). Once detected, many heart defects can be surgically repaired (CDC, 2018c; AAP, 2019).

The State of Nevada worked with the AHA and other partners to implement NRS 442.680 to address CCHD screenings.

Since July 2015, all hospitals or obstetric centers must screen all newborns after 24 hours of birth and prior to 48 hours of life to determine if the newborn suffers from CCHD. The attending physician must report the infant if they have failed the CCHD screening to the DPBH Chief Medical Officer, or a representative thereof, and discuss the condition with those responsible for the infant’s care.

Pulse oximetry is a lifesaving, low cost, non-invasive diagnostic test completed in as little as 45 seconds at just $4 per infant (AAP, 2019). Pulse oximetry estimates the percentage of hemoglobin in the blood saturated with oxygen (CDC, 2018c). When screening identifies newborns with low blood oxygen levels, echocardiography then provides definitive diagnosis of heart defects (CDC, 2018c; AAP, 2019).

Working in partnership with Nevada birthing hospitals, NHA, and AHA, the Title V MCH Program has provided technical assistance and ensured all Nevada birthing hospitals are reporting.

The CCHD registry contains monthly counts for the number of screens, number of births, number of failed screens, and percent of failed screens. The registry also includes details on discrepancies in the number of screens and births for the month reported, patient information for failed screenings, and whether the failed screening was found via prenatal detection.

In 2019, the CCHD Registry included a total of 34,301 births. A total of 30,810 (89.82%) were documented as receiving a pulse oximetry screening. Of the 3,491 (10.18%) infants without documentation of a screen, 116 passed away, 1,821 were sent to NICU, 846 infants received echocardiograms, 574 were believed to be home births, 26 were confirmed missed screens, 107 were transferred to another facility, and parents or family members declined services for one infant. The confirmed missed screens were all documented as receiving either doctor or family notification from the birthing facility. A total of 32 failed pulse oximetry screenings were reported.

There is no funding allocation related to NRS 442.680 and the CCHD registry receives no portion of newborn screening fees or dedicated federal funds.

Centers for Disease Control and Prevention [CDC]. (2018a). What are congenital heart defects? Retrieved from https://www.cdc.gov/ncbddd/heartdefects/facts.html

American Heart Association [AHA]. (2019). The impact of congenital heart defects. Retrieved from https://www.heart.org/en/health-topics/congenital-heart-defects/the-impact-of-congenital-heart-defects

CDC. (2018b). Data and statistics on congenital heart defects. Retrieved from https://www.cdc.gov/ncbddd/heartdefects/data.html

CDC. (2018c). Critical congenital heart defects. Retrieved from https://www.cdc.gov/ncbddd/heartdefects/cchd-facts.html

American Academy of Pediatrics [AAP]. (2019). Newborn screening: Critical congenital heart defects. Retrieved from https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/PEHDIC/Pages/Newborn-Screening-for-CCHD.aspx.

Children and Youth with Special Health Care Needs Data

NPM 11 - Percent of children with special health care needs, ages 0 through 17, who have a medical home

 

According to the NSCH the percent of children in Nevada with special health care needs ages 0 through 17 who have a medical home has fluctuated from over time, from a high of 34.9% in 2016, to a low of 26.3% in 2017-2018, and 30.3% in 2018-2019. Nevada is significantly below the 2018-2019 national average of 42.3%, and ranks last out of the 50 states and D.C.

 

NPM 12- Percent of adolescents with special health care needs, ages 12 through 17, who receive the services necessary to transition to adult care.

 

According to the NSCH the percent of adolescents in Nevada with special health care needs ages 12 through 17 who receive services necessary to transition to adult care has remained low over time. The percent has ranged from a high of 10.3% in 2017-2018, to a low of 5.6% in 2016, and most recently is 8.3% from 2018-2019. Nevada is significantly below the 2018-2019 national average of 22.9%, and ranks last out of the 50 states and D.C.

 

NPM 15- Percent of children, ages 0 through 17, who are continuously and adequately insured

 

According to the NSCH the percent of children who are continuously and adequately insured has remained stable from 2016 to 2018-2019 at 62.4%. This is significantly lower than the 2018-2019 US national average of 66.8%, and Nevada ranks 43rd lowest out of the 50 states and D.C. Disparities exist in Nevada for this measure, as Non-Hispanic Black children are least likely to be continuously and adequately insured (54.9%). Hispanic children are also slightly below the Nevada average at 61.6%. Non-Hispanic White, Non-Hispanic Asian, and Non-Hispanic Multiple Race are above the Nevada average, at 62.8%, 65.1%, and 70.2% respectively.