CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS DOMAIN

Nebraska Annual Report for the 2020-2021 Year

 

In this section, Nebraska MCH Title V reports on the accomplishments and activities in the Children and Youth with Special Health Care Needs (CYSHCN) Domain for the period October 1, 2020 to September 30, 2021. This represents the fifth year of activity in the Title V needs assessment cycle.  The numerical sequence of headings used to organize the narrative below correspond to the narrative guidance for the Annual Report year as found on page 42 of the Title V Maternal and Child Health Services Block Grant to States Program: Guidance and Forms for the Title V Application/Annual Report, OMB Number 0915-0172, Expiration Date 1/31/2024.

 

From the 2020 Needs Assessment, the Nebraska Priorities selected in the CYSHCN Domain for 2020-2021, with NPM, SPM, and ESM statements for the period are as follows:

 

• Behavioral health in schools

NPM: Percent of children with and without special health care needs, ages 0-17 years, who have a medical home

ESM: The number of CYSHCN families who have contact with a Parent Resource Coordinator

 

1. Context: The State of the CYSHCN Population Domain

The Medically Handicapped Children’s Program and dedicated CYSHCN funding from Title V is administered by the Division of Children and Family Services. The Medically Handicapped Children’s Program (MHCP) provides medical support services to children and youth with special health care needs in low-income families. Eligible families have no insurance or are under-insured creating a hardship and many times resulting in the children not receiving proper health care if the assistance isn’t provided. Covered diagnoses include diabetes, cystic fibrosis, severe asthma, seizures, heart conditions, genetic disorders, craniofacial disorders, certain orthopedic conditions, and cerebral palsy, among many others. The program assists in paying for prior authorized specialized medical care for the enrolled child or youth as well as providing case management services for the families.

 

In 2020-2021, MHCP continued its partnership with the University of Nebraska Medical Center Munroe-Meyer Institute (UNMC MMI) to deliver medical services to CYSHCN throughout western and northern Nebraska. Specialized providers in this geographic area are often scarce. These services are provided through medical clinics by a variety of specialized providers, who travel to rural areas of the state to provide services in a clinical team approach. The team members are part of UNMC MMI or have an agreement with MHCP outside of UNMC MMI. The team’s expertise typically consists of a geneticist, pediatrician, registered nurse, phyciatrist, orthopedic surgeon, orthodontist, oral plastic surgeon, physical therapist, psychologist, nutritionist, and others. Clinic teams focus on each child or youth with special health care needs to evaluate/follow up on their care, determine comprehensive treatment plans, and make recommendations. Once dictated, clinic reports are distributed to families, as well as the Primary Care Provider and assigned MHCP Social Services Worker.

 

The Medically Handicapped Children’s Program (MHCP) holds medical clinics in communities across Nebraska. The clinics bring a team of medical specialists to rural Nebraska to address the needs of children and youth with special health care needs. The COVID-19 pandemic impacted the service offered to families in 2020-2021. During the early months of the pandemic, many sites closed and medical clinics had to be placed on hold leaving families without the medical care and socialization they were accustomed to. Fortunately, for the families, the medical teams were able to adapt and provide services via telehealth when appropriate and available. Telehealth options provided a solution for services until the clinic sites were able to fully reopen and COVID-19 restrictions were lifted. UNMC is a state-of-the-art medical institute that was easily able to ensure a smooth transition to telehealth services. The clinics are now offered using a hybrid model with in-person and telehealth service delivery as needed. 

In addition to the services directly provided through the Medically Handicapped Children’s Program, the ongoing partnership with UNMC MMI is integral in serving the children and youth with special health care needs across Nebraska. This partnership has allowed Title V to continue the Family Care Enhancement Project. The project employs Parent Resource Coordinators (PRCs) in medical clinics throughout the state to partner with families as they work through the different systems of care to get the needed services for their children with special health care needs. The Parent Resource Coordinators have children of their own with special health care needs and also complete training to best serve the families. Parent Resource Coordinators are part of Nebraska’s dynamic workforce of Community Health Workers (CHW).  Other areas in which the partnership with UNMC MMI has helped Title V branch out are with medical clinics (as discussed above), Neonatal Intensive Care Follow-up, and the Teratogen Project.

The Disabled Children’s Program (DCP), which falls under the Medically Handicapped Children’s Program, enrolls children and youth with special health care needs who are birth through 15 years of age and are currently receiving payment through Supplemental Security Income (SSI). If a child is receiving SSI, they are eligible for and receiving Medicaid/Managed Care benefits for their medical needs, therefore DCP offers the supportive services not received through Medicaid/Managed Care or other related sources. In the DCP, many of the children and youth enrolled are receiving services due to eligible diagnoses related to mental and/or behavioral health. DCP offers services such as medical mileage reimbursement, meals/lodging reimbursement, respite care, special equipment, and home/vehicular modifications. The Social Services Workers offer case management to families enrolled and receiving services. There are specific and significant concerns addressed by DCP to support children and families: appointments to psychiatrists for medication checks, additional visits to medical professionals at further distances due to children with sensory issues from mental health causes, and/or the increased need for respite care due to children with high-risk behavioral needs.

In 2020-2021, services related to CYSHCN were also delivered by the Title V School Health Program.  Through a public health workstream, the School Health Program works with schools and school health professionals across the state, and is led by a professional nurse consultant. Through this workstream, Title V is able to complement the work of the Medically Handicapped Children’s Program with population-level public health approaches to address the priorities of children and youth with special health care needs as they are served in the school setting, including disparities. Prior to the onset of the pandemic, in late 2019 Voices for Children in Nebraska released the annual Kids Count report.  Included in the report were findings from a study of discipline practices in Nebraska schools, including one that describedthe significant disproportionality children and youth with disabilities face regarding disciplinary and exclusionary measures.  Nebraska stakeholders have deep concerns about the disparities and barriers faced by these children. This report resonated strongly with stakeholders in the 2020 MCH Needs Assessment, and stakeholders expect Title V to respond.

 

2. Summary of Programmatic Efforts and Use of Evidence-based or Evidence-informed Approaches to Address Priority Needs

 

Priority: Behavioral health in schools

2020-2021 Objectives and Strategies

 

Objective CS9a: By 2025, the Medically Handicapped Children's Program (MHCP) will collaborate with stakeholders to implement a formalized, sustainable, statewide support structure to provide a continuum of support to families with children and youth with special health care needs

 

Summary of Programmatic Efforts

Planned strategies for this objective include Title V seeking a community partner to develop and implement a Collaborative with stakeholders. The Collaborative establishment will include families, and enhance the availability of knowledge, services, and supports for families of CYSHCN.  Included will be a website and information repository, formalized partnerships supported by memoranda of understanding or agreement; medical-community-legal partnerships; training and outreach for families and providers; and data collection and evaluation.

 

The strategies started with Nebraska Title V completing the planning steps of developing a formal outline of the intention, the purpose, and the hopeful outcomes of the future Collaborative.  Title V considered and made decisions on possible community members that had the potential to be a vendor, developed a program budget, researched similar projects in other state Title V programs or other programs, researched Nebraska resources and programming, and initiated the drafting of the competitive procurement tool that will be utilized. The results of the internal research for Nebraska confirmed the need for a Collaborative of stakeholders to provide a continuum of support to families with children and youth with special health care needs that will be a resource of currently collected information and to advocate for the needs of these families and others in the community.

 

The project has been named the Nebraska Connecting Families Network. The Nebraska Title V staff completed the draft of the competitive procurement documents and recently posted the proposal for community agencies to consider.

 

Planned strategies for this objective also included Title V partnering with Munroe Meyer Institute and Nebraska’s Early Development Network to continue growing the Parent Resource Coordinator program to provide support to families with CYSHCN ages birth to 21 years. 

 

The partnership between the Medically Handicapped Children’s Program (MHCP) and the University of Nebraska Medical Center, Munroe-Meyer Institute (MMI) allowed the program to engage and empower families through a peer support model called the Family Care Enhancement Project. The project promotes the principles of family-centered care in a medical care setting and also parent-to-parent mentorship. Parent Resource Coordinators (PRCs), who are family members that have children with special health care needs, are placed in medical clinics throughout the state to help other families that have CYSHCN get connected to early intervention services, and special education services, and other community social and health resources. Parent Resource Coordinators are family members who have CYSHCN and have experienced the systems. Each Parent Resource Coordinator must complete a training curriculum on Nebraska services so they can support other families currently needing services in our statewide systems.

MMI partners with pediatric medical practice sites, as well as outstate clinic sites, in select locations across the state, to provide Parent Resource Coordinator services to families seen in the practice. The project allows Parent Resource Coordinators to provide face-to-face mentorship to families and medical clinic providers to enhance the coordination between educational, medical, and social services programming. Each Parent Resource Coordinator is required to complete online training modules upon their hire, shadow other Parent Resource Coordinators in clinics, and are provided with ongoing technical assistance to address the questions of families. At least two of the Parent Resource Coordinators were bilingual, enriching the consumer experience.

The Family Care Enhancement Project has proven over time the effectiveness of peer support and family-centered models to support the CYSHCN population in decision-making, family engagement, and empowerment. The benefits of a family working through difficult times with another parent that has experienced a similar situation with their CYSHCN cannot be overstated. From October 1, 2019, through September 30, 2020, the Parent Resource Coordinators served 1,380 children and families. Approximately 86 percent of children and families received case management services (intensive support—more than 30 minutes spent with family) and the other 14 percent were classified as information and referral (light touch—less than 30 minutes with family) only. The community resources most requested were related to Family Supports, Educational Supports, and Medical Supports in that order.

The PRCs were vital in referring children with special health care needs to the Early Development Network (EDN) and Early Development Special Education (EDSE). Early intervention and detection must be in place for the best outcomes for CYSHCN. If the CYSHCN were not found eligible for services through EDN or EDSE, the PRCs connected the families to other Early Intervention programs or other community resources.

Use of Evidence-based or Evidence-informed Approaches in this Objective.

The use of Community Health Workers is supported by some evidence of effectiveness in providing education, referral, and follow-up, case management, home visiting, etc. for those at high risk for poor health outcomes, according to the site County Health Rankings and Roadmaps, What Works for Health directory at https://www.countyhealthrankings.org/take-action-to-improve-health/what-works-for-health

 

Objective CS9b: The School Health Program will implement a collaborative integrated project with schools and community partners to promote trauma-informed care and restorative discipline practices as approaches to address disparities and exclusion at school

 

Summary of Programmatic Efforts

When Title V entered into this priority, driven as noted by deep concerns expressed by stakeholders at data showing disparities in ways behavior is managed at school, Title V developed strategies speaking broadly to collaborative work in an area (Behavioral Health in Schools) already populated by several initiatives and activities.  The first planned strategy was for the School Health Program to convene a cross-sector project team (or other means of continuous, collaborative communication) to promote the alignment and integration of approaches statewide to improve mental and behavioral well-being of students with and without special health care needs. The second planned strategy laid the groundwork for the identification of opportunities to develop, implement, and evaluate a project activity to promote trauma-informed schools and restorative discipline practices in order to disrupt racial and other disparities in school discipline practices.

 

In practice, the School Health Program Manager led several very informative convening activities with partners working in the area of mental or behavioral health in schools in Nebraska, and much was gained by the sharing of information.  However, in an active field, there seemed little likelihood that Title V’s best contribution would be another small project.  As an alternative, working in partnership with NEP-MAP, the Nebraska Partnership for Mental Healthcare Access in Pediatrics, Nebraska’s HRSA-funded Pediatric Mental Health Care Access Project for which Title V serves as lead, the School Health Program launched the School Nurse Behavioral Health Consultation project, which provided office hours for school nurses to contact a pediatric psychiatric Nurse Practictioner for information and input regarding students with behavioral and mental health issues at school.  In addition, with the Nurse Practitioner consultant and other mental health professionals, the School Health Program provided a series of mental health continuing education topics for school health professionals.

 

From this point, the program returned to the original issue brief, to once again review stakeholder expectations that Title V has something to bring to the table on the topic of disparities in behavior management practices at school, with data demonstrating the most severe disciplinary practices rest disproportionately on minority students, male students, and children and youth with disabilities. By 2021-2022 the School Health Program, while continuing the Consultation service and continuing education, designed and initiated an activity to interview key stakeholders to gain greater insight about the dimensions of the issue.

 

Use of Evidence-based or Evidence-informed Approaches in this Objective.

The phrase prompt is especially pertinent in this priority area due to the fact that stakeholders identify that evidence-based practices for integrated behavior management at school and home exist.  However, stakeholders and key informants report, such practices may not be implemented consistently and with fidelity; teachers may lack support, training, and resources for implementing such practices; or these practices may not be part of a teacher’s toolbox for classroom management, leaving the teacher to address disruptive behavior from an emotional or inconsistent foundation.

 

To assure parents and families are recognized as decision-makers for their children and have access to the support they need, evidence points strongly to the role of family-centered medical home approaches, wherein the provider commits to the practices that make families comfortable and confident with care.  An external body of accumulated information and resources is only as good as the current accuracy, and the accessibility (through literacy, language, and technology) that places information in the hands of diverse and multicultural users. 

 

3. Assessment of Alignment of NPMs, ESMs, SPMs, and SOMs with Priority Needs

 

Priority:  Behavioral health in schools

NPM: Percent of children with and without special health care needs, ages 0-17 years, who have a medical home

ESM: The number of CYSHCN families who have contact with a Parent Resource Coordinator

 

Alignment:

The language of the priority statement makes alignment with National Performance Measures.  No NPM is available that speaks to mental health needs among MCH populations, and the site www.mchevidence.org offers little guidance regarding this priority.  The selection of the NPM regarding medical home links to family empowerment, however, is not nuanced sufficiently to target the scenario that most alarmed stakeholders, which is how students are affected by behavior management in schools. 

 

In the What Works for Health directory of County Health Rankings and Roadmaps, there is evidence for logical alignment between the need identified for resources for family empowerment and family engagement, and contact with Parent Resource Coordinators. At https://www.countyhealthrankings.org/take-action-to-improve-health/what-works-for-health   evidence supports the effectiveness of the following strategies in increasing quality and coordination of care, and provision of culturally competent care: navigators, cultural competence of providers, skilled interpretation, and medical home. 

 

4. Progress in Achieving Established Performance Measure Targets along with Other Programmatic Impact

 

Objective CS9a: By 2025, the Medically Handicapped Children's Program (MHCP) will collaborate with stakeholders to implement a formalized, sustainable, statewide support structure to provide a continuum of support to families with children and youth with special health care needs

 

Discussion of Performance Measurement and Other Programmatic Impacts

In the Medically Handicapped Children’s Program, performance targets were met for the first year of development and implementation of the new Nebraska Connecting Families Network project. Nebraska Title V finalized the outline for the future Collaborative, named the project the Nebraska Connecting Families Network, and initiated the drafting of the competitive procurement tools.

 

Objective CS9b: The School Health Program will implement a collaborative integrated project with schools and community partners to promote trauma-informed care and restorative discipline practices as approaches to address disparities and exclusion at school

 

Discussion of Performance Measurement and Other Programmatic Impacts: Results-based Accountability Measures

Since 2015, Nebraska Title V has been writing and utilizing Results-base Accountability (RBA) measures in an effort to make annual impacts and achievements more discernable to front-line staff and stakeholders.  In addition, the use of RBA has specifically highlighted inclusion and equity-focused efforts that have been transforming Title V work. The public health focus of this domain, as exemplified by the activities of the School Health program and Title V’s focus on improving mental health access for the pediatric population with and without special needs, is represented by RBA. 

 

Results Based Accountability (RBA) measures Behavioral Health in Schools
	Proposed 2020-2021	Achieved 2020-2021
How much did we do?	How many cross-sector meetings on behavioral health in schools were convened by the School Health Program?  How many people participated?	Three,with at least six people at each convening.
How well did we do it?	Did the group consider equity topics in their work?  If so, describe.	No entity was identified with an equity focus, cultural competency component, or prioritizing disparities.
Is anyone better off?	Has the School Health Program implemented any program interventions working with School Nurses or other school personnel?  If so, what is the measure of impact?	School Nurse Behavioral Consultation Project; Educational events for school nurses by mental health professionals on anxiety, depression, and suicide.

 

Discussion – Other Programmatic Impacts

This priority represents Title V MCH working in a capacity to address the special needs of children with mental and behavioral needs, in ways that span the boundaries of the CYSHCN and Child Health domains. The presence of Title V MCH in this space has brought many stakeholders to the table to work on equity topics, screening, care coordination, and other strategies to improve access to care and family support.

 

5. Challenges and Emerging Issues

 

Disparities in Discipline

In late 2019 Nebraska saw the release by Voices for Children of the annual Kids Count report.  Included in the report was a report of findings from a study of discipline practices in Nebraska schools.  One of the findings was the significant disproportionality children and youth with disabilities face regarding disciplinary and exclusionary measures.  Nebraska stakeholders have deep concerns about the disparities and barriers faced by these children.  In 2020, the selected priority for the next five years in the Children and Youth with Special Health Care Needs domain is entitled Behavioral Health in Schools. Inequitable discipline measures are just one aspect of the educational challenges faced disproportionately by children and youth with special needs, as well as children and youth from marginalized groups.  Stakeholders interpret the need for greater availability of family support at the school and systems level.  

 

Mental health and behavioral health needs of all children, and the need for public health approaches to serve CYSHCN.

The need for improved access to mental health care services, improved screening practices for all youth, and resources to support the mental well-being of all youth in the population, are great.  Health and community systems of care cannot fully meet these needs, especially for disadvantaged and minority youth, with traditional approaches.  Tele-behavioral health use escalated during the pandemic, representing one strategy and school-based mental health services, often in partnership with local community provider organizations, are another.  Universal screening of children and youth, accompanied by effective referrals, also is embraced by many providers.

 

6. Overall Effectiveness of Strategies and Approaches: Addressing Needs and Promoting CQI

 

The efforts of Title V to widen the lens of the CYSHCN domain to include the School Health program and address the needs of all children with mental and behavioral health needs is a strategy intended to reduce stigma, include more families, and align more fully with the population level strategies Title V is using to improve mental well-being in the population.

 

Meanwhile, Title V continues to support the systems-level infrastructure of the Medically-Handicapped Children’s Program, with particular emphasis on utilization of Parent Resource Coordinators.

 

In the 2020 Needs Assessment, Nebraska stakeholders coalesced around a single priority, which arises from the previously-discussed Kids Count report in late 2019, illuminating disparities in disciplinary practices and consequences for students in Nebraska’s public schools.  The priority is entitled, “Behavioral Health in Schools.”  Nebraska will continue the dual and intertwined approaches of addressing the priority and the concerns raised by stakeholders particularly in the area of disparities, of responding through workstreams of the Medically Handicapped Children’s program, and of the Title V School Health Program.