CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS (CYSHCN) DOMAIN
Nebraska Application for the 2023-2024 Year
In this section, Nebraska MCH Title V describes planned activities in the CYSHCN Domain for the period October 1, 2023, to September 30, 2024. This represents the fourth year of activity in the Title V five-year needs assessment cycle for 2020-2025. 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 43 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.
The Nebraska Priorities in the CYSHCN Domain with 2023-2024 NPM, SPM, and ESM statements are as follows:
- Priority: Behavioral and Mental Health in School
NPM: Percent of children with and without special health care needs, ages 0-17 years, who have a medical home
ESM: The percentage of families who are satisfied with supports provided by the Parent Resource Coordinator
- Description of Planned Activities
OVERVIEW OF CYSHCN DOMAIN
Division of Children and Family Services – Medically Handicapped Children’s Program
The Medically Handicapped Children’s Program (MHCP) will continue to provide 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, 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.
During 2022-2023, MHCP has continued its partnership with the University of Nebraska Medical Center Munroe-Meyer Institute (UNMC MMI) to deliver direct medical services to CYSHCN throughout western and northern Nebraska. This is a geographic area where specialized providers are sparse. These services are provided through medical clinics by a variety of specialized providers, traveling 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 geneticist, pediatrician, registered nurse, physiatrist, 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.
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 expand in areas such as the Family Care Enhancement Project. The project employs Parent Resource Coordinators in medical clinics throughout the state to partner with families as they work through the systems of care to get the services for their children. The Parent Resource Coordinators have children of their own with special health care needs and complete training to serve the families. Other areas in which the partnership with UNMC MMI has helped Title V branch out are medical clinics as discussed above, Neonatal Intensive Care Follow-up, and the Teratogen Project. The Parent Resource Coordinators are active in, and bring a family-centered perspective to, Title V Community Health Worker workforce development. UNMC MMI also delivers the clinical demonstration project activities of a tele-behavioral health consultation project for primary care providers, through a subaward with DHHS and the pediatric mental health care access program.
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: 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. These, as well as others, are all too common in the Disabled Children’s Program.
In 2021, the Medically Handicapped Children’s Program has implemented a competitive procurement process for Nebraska’s Connecting Families Network. The initial response to the competitive RFP was disappointing, and there were no applicants. The MHCP released the RFP again in 2022 and UNMC MMI submitted a proposal for the network. In early 2023, MHCP and UNMC MMI worked to get the subaward in place. Short term goals for the network include the creation of a community collaborative with partners, organizations, school personnel, students, families, advocacy groups, and/or other stakeholders gathered to map and address mental/behavioral health resources available to students and families access and engagement with those resources which lead to the identified disparities related to lost instruction time for students in school, disproportionate suspension of children with disabilities (especially those who are minorities), and harsher discipline practices which lead to long-standing, inequities.
Division of Public Health
The Title V program year 2022-2023 represented continuing development of looking at and growing public health and population-based approaches to supporting the life course wellbeing and equity of Children and Youth with Special Health Care Needs.
In recent applications and reports, Title V has joined other states in lifting the cascade of mental and behavioral health issues among youth with and without special health care needs, likely accelerated or intensified due to pandemic stressors that continue. Building the capacity of schools and other community organizations to serve students and families well when they have mental and behavioral health issues is a significant public health approach that can better serve children with and without special health care needs.
Changes to staffing within the Maternal Child Health (MCH) program have impacted how Title V addresses this identified need. For the past 10+ years, the MCH program has had a School Health program staffed by a School Nurse Consultant. In April 2022, staff transitions offered the MCH program an opportunity to revise the focus of the School Health program. To more fully address children’s health needs across Nebraska, the position has been broadened, reclassified, and no longer requires a nurse (the new name for the position is “Children’s Health Program Specialist”). The staff in this position will find success through partnership with other state-level partners, including the School Health Liaison/State School Health Consultant at Nebraska’s Children’s Hospital and Medical Center and partnerships with the Nebraska Department of Education. Newly hired in April 2023, the new staff person will have an opportunity to participate in the development of this role.
Stakeholders also see the value in a broad approach to community-based services. One respondent in the public input process said, “Consider a collaboration with Help Me Grow for early years assessment and access to health services.” From the Help Me Grow Nebraska website, “Families benefit as Help Me Grow listens to them, links them to services and provides ongoing support through this interconnected system.” Linkages are provided for healthcare providers, families, communities, and childcare providers. Linkages came up in more than one comment for this strategy. Each of these two responses highlight the need for linkage. “I would increase the number of PRCs [parent resource coordinators] needed to assist families find resources and supports to deal with their youth with behavioral challenges” and “Having access to mental health providers either in person or by Zoom would make a difference in the Rural area.”
Priority: Behavioral and Mental Health in School
2023-2024 Objectives and Proposed 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 supports to families with children and youth with special health care needs (CYSHCN)
Strategy CS9a (1): MHCP will establish the family collaborative by identifying a contractor, developing operating agreements, and convening statewide stakeholders to provide a continuum of family supports.
Strategy CS9a (2): MHCP, in collaboration with the Munroe Meyer Institute (MMI) at the University of Nebraska Medical Center, will continue the Parent Resource Coordinator (PRC) project, supporting families with CYSHCN age birth to 21 years.
Discussion of Activities for this Objective – Relevance to Identified Priority
The continued partnership between the Medically Handicapped Children’s Program (MHCP) and the University of Nebraska Medical Center, Munroe-Meyer Institute (MMI) allows 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 parent-to-parent mentorship. Parent Resource Coordinators (PRC), who are CYSHCN family members, are placed in medical clinics throughout the state to help other CYSHCN families get connected to early intervention services, special education services, and other community social and health resources because they have experience with relevant systems of care. Each PRC must complete a training curriculum on Nebraska services so they can support other families in need of services in Nebraska’s statewide systems. PRC support includes mentorship with families and medical clinic providers to enhance the coordination between education, medical, and social supports for families.
MMI partners with pediatric medical practice sites, as well as outstate clinic sites, in select locations across the state, to provide PRC services to families seen in the practice. The project allows PRC to provide face-to-face mentorship to families and medical clinic providers to enhance the coordination between educational, medical, and social services programming. Each PRC is required to complete online training modules upon hire, shadow other Parent Resource Coordinators in clinics, and are provided with ongoing technical assistance to address the questions of families.
Medically Handicapped Children’s Program will support UNMC MMI’s execution of the subaward for Nebraska’s Connecting Families Network. The Network’s agreements will include planned interventions and strategies to enhance the availability of knowledge, services, and supports for families of CYSHCN. Nebraska’s Connecting Families Network will create a space where stakeholders can connect to design a framework for sharing and advancing individual knowledge and skills to navigate a continuum of family support and maximize the interaction of family and service providers.
Objective CS9b: By 2025, Title V will collaborate with partners to increase the capacity of schools for behavioral health access and referrals, and equitable behavior management practices.
Strategy CS9b (1): Participate in collaborations with partners, networks, programs, and projects working with schools to address disparities and promote equitable access and engagement with mental/behavioral health resources.
Strategy CS9b (2): Partner with the Children’s Hospital and Medical Foundation and Nebraska Department of Education to provide continuing education on mental and behavioral health best practices for school health professionals.
Discussion of Activities for this Objective – Relevance to Identified Priority
In 2022-2023, Title V and the MCH Program has devoted time to learn more about partners, systems, resources, and actors that have an interest in mental health and well-being of school-aged children and youth in Nebraska.
Recent legislation, LB852, requires each school district, starting August 1, 2023, designate one or more behavioral health points of contact for each school building or other division as determined by the school district. The legislation also requires the Nebraska Department of Education (NDE) to develop a registry of state and local behavioral health resources available to work with students and families by geographic area. To develop guidance for this legislation and meet its requirements, NDE convened Educational Service Unit staff, Behavioral Health Regional staff, and state-level partners to implement the legislation. Title V staff were invited to participate in this work as a state-level partner. The implementation of this legislation is being coordinated by partners across the state. Title V staff are stressing attention to equitable access and usability with the registry.
The need for behavioral health access and referrals has resulted in increased funding and programming within Nebraska. On-going projects that Title V can support include
- Project AWARE through the Department of Education (funded by the Substance Abuse and Mental Health Services Administration),
- An Intellectual and Development Disabilities Toolkit to Support Connections in Schools from The Arc of Nebraska,
- Healthy Schools Program through NDE,
- Regional trainings offered by the Mental Health Technology Transfer Center Network,
- Trainings from the Behavioral Health Education Center of Nebraska at the University of Nebraska Medical Center.
In 2023-2024, DHHS Title V will continue relationship-building and collaboration with these many partners, looking at strategies to improve screening and referral, as well as equity practices in schools. NEP-MAP (Nebraska Partnership for Mental Health Care Access in Pediatrics) has collaborated with Title V to bring the School Nurse Behavioral Health Consultation Service to school nurses, making available a resource to address questions about behavioral health needs of children and youth at school.
Now that the MCH Program has hired a Children’s Health Program Specialist, Title V will develop future directions for its partnership with the NDE and Children’s Hospital and Medical Center. Partnership will support continuing education on mental and behavioral best practices for school health professionals. As part of these efforts, the partnership will utilize lessons learned from Nebraska’s participation in the 2022-2023 “Enhancing School-based Health and Mental Health Services through Training, Education, Assistance, Mentorship, and Support (TEAMS)” Cohort with the American Academy of Pediatrics (AAP).
- Alignment of planned activities with annual needs assessment updates
The formal establishment of a family-systems collaborative group, led by an entity identified through a competitive request for proposals process, is aligned with the need to increase family voices, family empowerment, and family resources to meet the needs of children with mental and behavioral health needs, in schools and other systems.
The capacity of schools and other community organizations to respond to student behaviors with fair, just, and reasonable interventions to preserve the student’s educational opportunities and make appropriate referrals for screening and management are key to correcting life course disparities that are set in motion when children do not have the opportunity to succeed in school.
The activities of this domain are closely aligned with stakeholder expectations and the 2020 needs assessment. There are no updates to the needs assessment that alter this alignment.
- Emerging new priorities taking precedence over the established priority needs
No new priorities have emerged in this domain to take precedence over the established priority need. The COVID pandemic has resulted in raised awareness of the increasing intensity of this priority need among all children and youth.
- Relevance of ESM to selected NPM, changes in ESM
Priority: Behavioral and Mental Health in School
NPM: Percent of children with and without special health care needs, ages 0-17 years, who have a medical home
ESM: The percentage of families who are satisfied with supports provided by the Parent Resource Coordinator
In April 2021, Nebraska received the ESM Report from MCH Evidence Center for the state. The MCH Evidence Center assesses ESMs aligned to NPMs for the degree to which they are supported by evidence, and through the lens of Results-based Accountability. For the CYSHCN Domain, the report concluded there is no similar strategy found in the established evidence for the NPM. The ESM of parents having contact with a Parent Resource Coordinator is considered an effective measure of reach, which could be strengthened by using a denominator (total # of relevant group addressed) to show %. In 2023-2024, Title V goes further with this ESM to measure family satisfaction with the supports provided by the PRC – getting feedback directly from involved families as a measure of success and necessary improvements.
In addition to assigning ESM to at least one Priority in each Population Domain, corresponding to a selected NPM, Nebraska Title V uses Results-based Accountability Measure. Since 2015, Nebraska Title V has been writing and utilizing Results-base Accountability (RBA) measures to make annual impacts and achievements more discernable to front line staff and stakeholders. In addition, use of RBA often highlights inclusion and equity-focused efforts that have been transforming Title V work. In the CYSHCN domain, RBA measures pertain only to the public health/school health workstream.
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Results Based Accountability (RBA) measures Priority: Behavioral Health in Schools |
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Proposed for 2023-2024 for Objective CS9a |
Proposed for 2023-2024 for Objective CS9b |
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How much did we do? |
How many families worked with a PRC?
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How many statewide projects did Title V staff collaborate on related to this priority? |
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How well did we do it? |
Did families get appropriately matched with a PRC reflecting their cultural background and/or language of choice?
How many stakeholder groups were involved in the Nebraska’s Connecting Families Network? |
Did the Title V collaborations result in increased capacity of schools for behavioral health access and referrals? For equitable behavior management practices? |
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Is anyone better off? |
What were the results of the family satisfaction survey?
Did the Collaborative have any measurable impacts? What were they? |
Did people who received training and outreach about behavioral health resources think it would improve their utilization of school and referral resources? |
- Are changes needed in the established SPMs and SOMs, if applicable
This section is not applicable in the CYSHCN domain.
- Updates or changes to the Five-Year Action Plan Table
The effort to describe a five-year trajectory of planned and proposed activities is a new approach for Nebraska. The goal is to provide stakeholders regular information on the efforts of Title V in relation to Priority Statements, Objectives, and Strategies that is readily accessible and even engaging. A synopsis of the five-year action plan for this domain is shown in the table below.
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Priority: Behavioral Health in Schools 5-year Action Plan, 2020-2025 |
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Period |
Summary activities of the period |
Status 7/2023 |
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Year 1
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Year 2
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Year 3
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Year 4
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Year 5
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In the workstream described for the Medically Handicapped Children’s Program in the CYSHCN domain, there are no changes proposed for the action plan in 2023-2024.
In the public health workstream described for the Title V School Health Program in the CYSHCN domain, strategies are modified compared to 2022-2023:
- Strategy CS9b (1) and (3) described Title V’s collaborative work to increase mental wellbeing of students and learn about strategies to address disparities and promote equitable behavior management practices at school. These goals have been combined because it is through collaborations that Title V will address disparities and promote equitable behavior management practices.
- Strategy CS9b (2) was revised to name the key partner Title V plans to partner with to provide continuing education on mental and behavioral health best practices for school health professionals.
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