NPM #11 Medical Home – Ensure coordinated, comprehensive and ongoing health care services for children with and without special health care needs.

 

Please note: for clarity in this domain narrative, “cyshcn” refers to all children and youth who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and require health and related services of a type or amount beyond that required by children generally. “CYSHCN” refers to the Children and Youth with Special Health Care Needs Program.

 

According to the 2019-2020 National Survey of Children’s Health (NSCH), an estimated 51.9% of Missouri cyshcn had a medical home in comparison to 42.2% nationwide. In addition, the percentage of cyshcn with a medical home varied by socio-demographic characteristics. Non-Hispanic White cyshcn in Missouri (51.7%) had a medical home more frequently than their national counterparts (47.1%). College graduate households in Missouri had a notably higher proportion than high school graduate or GED households (Figure 6). Nationally, children 0-5 years (38.9%) were less likely to have a medical home compared to 12-17 year olds (43.9%). In Missouri, younger children less commonly had a medical home (Figure 7). Cyshcn with only public insurance were less likely to have a medical home (47.7%*) than their privately insured counterparts (55.2%). However, the percentage for Missouri cyshcn with only public insurance that had a medical home was higher than their national counterparts (34.7%). Single parent households (52.1%*) in Missouri had a lower proportion of cyshcn with a medical home than their two-parent married household counterparts (54.4%).

 

 

Nationally, among children without special health care needs, 47.9% received care through a medical home compared to 48.5% in Missouri. Both percentages are below the HP2020 target of 63.3%. Similar to cyshcn, the proportions of Missouri children without special health care needs also varied by socio-demographic characteristics. Non-Hispanic Whites (51.1%) had the highest proportion receiving care within a medical home compared to Hispanics (35.7%*) and non-Hispanic Blacks (43.9%*). Non-Hispanic Blacks also had a higher percentage in Missouri than they did nationally (38.2%). Missouri children from single parent households (48.6%) less frequently had a medical home than their counterparts from two parent, married households (50.7%). Furthermore, children with private insurance only (53.9%) were more likely to receive care in a medical home than uninsured children (17.1%*) and children with public insurance only (49.1%*). College graduate households in Missouri (60.6%) had a higher proportion of children without special health care needs with a medical home than some college or technical school (41.7%) and high school graduate or GED households (38.4%). This proportion was slightly higher than the national proportion for college graduate households who have a medical home (60.0%).

 

 

Medical Home Strategies

Special Health Care Needs (SHCN) Initiatives

SHCN programming conducted comprehensive assessments in collaboration with participants and their families to identify strengths and address needs. Service coordination is an essential service for people with complex conditions and needs. Service coordination provided through SHCN is culturally competent, collaborative, proactive and comprehensive, and provides assessment through home visits and linkage to resources that enable individuals to obtain the best possible health and greatest degree of independence. The primary mechanisms of service coordination are individualized assessment, planning, plan implementation, monitoring, and transitioning. In State Fiscal Year 21, 99% of SHCN participants enrolled in the Children and Youth with Special Health Care Needs (CYSHCN) Program, Healthy Children and Youth (HCY) Program, and Medically Fragile Adult Waiver (MFAW) Program reported having a medical home. For participants/families without a medical home, Service Coordinators provided educational materials to help participants obtain coordinated, ongoing, and comprehensive care. SHCN utilized professional interpreters for phone conversations and home visits. SHCN had multiple documents available in various languages including: Arabic, Bosnian, Burmese, French, Russian, Somali, Spanish, and Vietnamese. SHCN Service Coordinators assisted participants/families in navigating the complex health care system and collaborated with external agencies and support systems to ensure coordinated care for participants and families, including access to information systems for shared data. Service Coordinators were regionally based throughout the state, ensuring easy access for participants/families and expertise in local resources. In addition, for youth who received in home services and were aging out of the HCY Program, SHCN collaborated with management staff of the DHSS Division of Senior and Disability Services (DSDS) and the Department of Mental Health (DMH) to increase coordination among state agencies delivering adult home and community-based services. In Missouri, services for children are more robust than services for adults. Furthermore, adult services are fragmented among three state divisions, which have disparate service structures and eligibility processes. SHCN Service Coordinators took the lead in working with participants/families to schedule transition meetings with staff from the DSDS and DMH. The transition meetings were coordinated to accommodate the participant’s/family’s needs. During the transition meetings, each agency representative explained services available through their agency and encouraged participants/families to ask specific questions regarding their situation and needs. Transition meetings helped participants/families make informed decisions as they obtained information and identified available resources.

 

In Missouri, people who are elderly, blind, or disabled are given the option to utilize Medicaid through Managed Care or fee for service. Medical reviews are conducted to determine if individuals qualify to ‘opt out’ of Managed Care Medicaid. However, individuals utilizing SHCN services through HCY or CYSHCN are exempt from the medical review and are automatically qualified to choose either Managed Care or fee for service. Ongoing communication between MO HealthNet (Missouri Medicaid), Managed Care Companies, provider agencies, and SHCN is required to ensure effective service provision. Individuals may switch between Managed Care Companies and/or fee for service Medicaid, which may inadvertently impact the services they receive. Not all fee for service Medicaid provider agencies are contracted with Managed Care Companies, so families need to prioritize and choose the option that enables them to utilize the providers who are most important to them. For participants enrolled in the HCY Program, SHCN assisted with authorization of in-home services to avoid gaps in services when changes in coverage occurred. In addition, for participants who did not receive in-home services through the HCY Program, SHCN provided MO HealthNet enrollment information on a weekly basis to ensure participants of the CYSHCN Program were provided the opportunity to choose between Managed Care Medicaid and fee for service Medicaid. The coordination of care for these individuals is extensive but necessary to ensure access to essential services.

 

Service Coordinators for the CYSHCN and HCY Programs completed the Service Coordination Assessment (SCA) with program participants and their families. The SCA includes components consistent with the Federal data collection regarding participants and families partnering in decision-making. 92% of SHCN participants and families enrolled in the Adult Brain Injury (ABI), CYSHCN, HCY, and MFAW Programs reported they were ‘very satisfied’ with SHCN services. SHCN collaborated with partners to coordinate services for participants. SHCN Service Coordinators and Family Partners referred participants and families to MO HealthNet and assisted them in navigating the Medicaid system. The SCA also included components which assess insurance availability for medical, vision, and dental services. The SHCN information system linked with the Department of Social Services (DSS) data system to obtain the current Medicaid status of participants. In addition, SHCN received referrals from the Missouri Balanced Incentive Program, also referred to as Missouri Community Options and Resources (MOCOR), for cyshcn. 

 

Service totals for SHCN FY21 included:

• CYSHCN Program served 768 CYSHCN.
• HCY Program served 1,308 CYSHCN.
• Family Partnership served 9,416 individuals (including family members of CYSHCN, community members and friends of CYSHCN families as well as advocates and professionals working with CYSHCN).

 

SHCN staff and programs continued to operate with several adjustments due to COVID-19; ensuring coordinated, comprehensive, ongoing services continued for participants and families. Continuing changes initiated in March 2020, all home visits were suspended, and replaced with phone contacts. SHCN staff collaborated with MO HealthNet staff to prepare 1135s and Appendix Ks to request Medicaid State Plan and Waiver amendments from Centers for Medicare & Medicaid Services (CMS). In addition to suspending all in-home visits, the following allowances were approved for in-home services: 1) acceptance of verbal consent rather than handwritten signatures, 2) when no other caregiver was available, personal care and waiver attendant care could be provided by family members who did not live in the same residence and were not legally responsible for the participant and were employed by an agency, 3) private duty nursing could be provided by family members who were licensed nurses and employed by an agency, including those who lived in the home and were legally responsible for the participant, and 4) graduate nurses were allowed to provide private duty nursing services. These amendments required collaboration with MO HealthNet, as well as other state programs, to ensure consistency in allowances to reduce confusion for individuals who received services through multiple programs. SHCN established protocols and implemented processes for communicating notifications and modifications to staff, stakeholders, and participants/families. SHCN consulted with MO HealthNet and Missouri Medicaid Audit and Compliance (MMAC) to ensure acceptance of electronic signatures from SHCN staff and adjusted forms to allow electronic entry. SHCN shifted training protocols for new staff to adjust to the remote workforce. Service authorization adjustments were implemented frequently due to staffing issues, changes in family schedules, school closures, and exposed or sick participants, family members, and/or staff members. In addition, SHCN staff members received multiple inquiries related to COVID-19 from families and providers, and they provided education on precautions, testing sites, and vaccinations. These activities began in March 2020 and continued through FY21.

 

SHCN contracted with MO Kids Assistive Technology (KAT) for improved access and independence of cyshcn. In FY21, the assistive technology services and devices provided through KAT were coordinated with a total of 78 entities (families, medical professionals, service coordinators, and schools) for 29 children across the state of Missouri. Projects included communication and mobility devices, hearing and visual devices, seating and mobility enhancements, and home and vehicle modifications. KAT was able to leverage funds from 22 different sources, totaling $136,144, to supplement Title V MCH funds. Communication with families, contractors, and Service Coordinators ensured that the projects were completed satisfactorily in accordance with the Americans with Disabilities Act.

 

Family Partners

Family Partners provided educational materials to newly enrolled SHCN program participants to increase awareness of the importance of a medical home for children with and without special health care needs. Family Partners also collaborated with key stakeholders, such as pediatric health care systems, to increase access to care for cyshcn by educating families about the importance and benefits of a medical home. Additionally, the Family Partners have continued to develop a webpage dedicated to medical home resources.  The SHCN Family Partnership disseminated information to families through quarterly E-News emails and bi-annual printed newsletters to keep families informed about statewide activities as well as important information regarding supports for families. Issues featured information and tools centered on the life course to assist families in exploring their options for resolving issues and overcoming barriers, creating a vision for the future, and connecting with the resources they need to make their vision for a good life possible. Family Partners assist families to resolve and overcome barriers that arise when talking care of CYSHCN. For example, they may share ideas on how to make it easier to travel with a person who has special health care needs or prepare for a conversation with a medical provider. In addition, information regarding the importance of a medical home for all children is included in each issue. Family Partners gathered input from families to determine the effectiveness of the information shared through the printed newsletters and E-News emails.

 

The Southeast Family Partner served as the AMCHP Family Delegate for Missouri and participated in the AMCHP Leadership Lab Family Partner Cohort. In this capacity, she participated in:

• AMCHP Leadership Lab Cohort activities as well as family engagement activities within SHCN and Title V programs, and
• The annual block grant review in November 2020 and the virtual AMCHP Conference in May 2021.

 

The Southwest Family Partner served as:

• A family advocate for the Pediatric Palliative Care (PPC) Task Force through the National Coalition for Hospice and Palliative Care, which is funded by a grant from the Cameron and Hayden Lord Foundation. The task force focuses on identifying field priorities, setting field strategies, and coordinating with organizations across the country to route resources to PPC activities designed to improve national alignment and impact. It is not the intention or role of the task force to implement these projects directly but rather to offer a road map for improving children’s access to high-quality palliative care.

• A member of the Council for Adolescent and School Health (CASH). Attending these meetings provided the opportunity to offer the family perspective as well as network with other professionals around the state ranging from social workers to school counselors.

 

The Northwest Family Partner served as:

• The secretary for the Missouri Parent Advisory Council (PAC). The purpose of the PAC, through Missouri’s Early Care and Education Connections at the newly established Department of Elementary and Secondary Education (DESE) Office of Childhood (OOC), is to engage and empower Missouri families. Members of the PAC are family leaders who have experience working with agencies that provide services to at-risk families with young children. Every PAC member receives training in Strengthening Families™ and the Protective Factors Framework through Strong Parents, Stable Children: Building Protective Factors to Strengthen Families and may facilitate future leadership trainings;
• A member of the Child Abuse and Neglect sub-committee for Missouri; and
• Participated in family engagement activities within SHCN and Title V programs.

 

The Northeast Family Partner:

• Served on the advisory committee for the Heartland Genetics Service Network to provide the family perspective. The Heartland Regional Genetics Network is focused on ensuring the best possible outcome for individuals with heritable disorders and optimizing the health of the population throughout the life cycle by improving understanding and awareness of genetics, expanding access to healthcare, and translating new findings to improve the quality of care within an eight-state region;
• Served as a member with the HOPE for Franklin County Coalition and Healthy Schools Healthy Communities, which promotes alcohol, drug and suicide prevention; and
• Continued to work with the St. Louis Resource and Respite Coalition to collaborate with over 50 organizations to assist families of cyshcn.

 

The Family Partners for Deaf and Hard of Hearing:

• Connected with families as they navigated programs and resources after their children were diagnosed with hearing loss. The Family Partners shared additional resources and parent support;
• Continued to develop connections with professionals across the country by participating in Hands & Voices Family Leadership in Language and Learning Center (FL3) and Family-to-Family Communities (F2FC) Deafblind Communities Project events;
• Served as a member of the Special School District Parent Advisory Council (SSD PAC) executive committee and gained knowledge and insights regarding processes of special education and became a voice for other families by sharing concerns and providing feedback at PAC meetings; and
• Facilitated meetings for the F2FC for Families with Children who are Deafblind with Complex Needs Support Group.

 

A SHCN Family Partner continued to participate with the Missouri Childhood Lead Poisoning Prevention Program (CLPPP) project. Family Partner collaboration was initiated with the Maternal Child Environmental Health (MCEH) Collaborative Improvement and Innovation Network (CoIIN) project. Though the MCEH CoIIN ended in the summer of 2020, several activities initiated for the CoIIN were continued and further developed as ongoing projects. Some examples are expanding targeted community outreach campaigns in low testing or high-risk areas of the state; review of outreach materials; and assistance with participation in a variety of presentations and planning sessions. The continued relationship with the Title V Program and Family Partners is a valued component in state endeavors to successfully increase the number of infants and children who have access to a coordinated care system that addresses their needs as a result of exposure to lead, ultimately decreasing maternal and child morbidity and mortality associated with lead exposure. In FY21, Title V funding was provided to cover, in part, some of the costs for increasing lead education in the communities, lead testing of children, and lead abatement activities.

 

The Missouri Family to Family Health Information Center uses the Life Course Framework in the development of a networking folder. This framework is used in webinars, which can be viewed by anyone at any time or viewed at host sites where families and professionals can learn from each other and discuss how the topics affect their lives. Using the Life Course Framework encourages families to create their vision for the future and supports professionals in thinking about how they are supporting families to build a vision while meeting their current needs. SHCN utilized Title V funds to support the printing and dissemination of the folders and Life Course materials for families of cyshcn.

 

Dental Home

The Office of Dental Health (ODH) continued to implement the Preventive Services Program (PSP) in Schools for the Severely Disabled under its ongoing agreement with DESE. The PSP provided an oral health screening by a dental professional, two doses of fluoride varnish for protection against tooth decay, and a referral to a local dental provider for care among children identified with a dental need. The referral to a local dental provider was to ensure identified needs are addressed and to link children to a dental home. Dental visits are recommended at least once or twice a year for all children and are especially important for cyshcn as they may have behavioral, dietary, or physical complications that affect dental health.

 

Ordinarily, the PSP educates children about good oral hygiene at an educationally appropriate level. For the Schools for the Severely Disabled, the oral health education is directed toward school caregivers and parents of students that have physical and/or intellectual disabilities. Part of this education is an emphasis on connecting children to a Dental Home regardless of whether a dental issue is identified at the time of the screening. Children also receive toothbrushes and toothpaste, which may be left at school or taken home. The target each year is to reach all 34 schools and serve approximately 300 students. Due to Coronavirus, no students were reached because schools restricted visitors or parents did not give consent for their child to be seen. ODH’s oral health consultants were available to advise on any dental issue a student had. Oral health supplies, education, literature and fluoride varnish were available to any child who was not screened due to the pandemic.

 

ODH worked with the Missouri Coalition for Oral Health, which is coordinating a collaboration effort between Missouri’s Developmental Disabilities Council, DMH and the University of Missouri-Kansas City Dental School, to educate dental professionals, thereby increasing access to care for cyshcn. Several meetings were held throughout the year to increase collaboration among these groups and discuss access to care for this population.

 

The Elk’s Mobile Dental Program provided specialized dental services to individuals with Intellectual and Developmental Disabilities (I/DD). The program operated in 17 locations around the state, including in many rural areas where access to a Dental Home for individuals with I/DD is limited. Furthermore, the Elk’s team is specially trained and equipped to serve individuals with I/DD, which increases compliance with regular and urgent dental treatment over time. The mobile unit is wheelchair accessible and sets up in a central location to reduce the burden and disruption of transporting individuals with I/DD. In ten of the last fourteen years, general revenue was available to support the program and paid for about 950 patient visits and 9,000 procedures. In addition to state funds, the Elk’s Benevolent Trust, a non-profit organization, is a resource for financial support for the program. The Elk’s Benevolent Trust would provide supplemental funding so adults and children with disabilities receive needed dental care. It is important to note that the Elk’s Mobile Dental Program also accepts Medicaid, which helps stretch the funding. For some individuals, the program is their dental home due to a shortage of dental professionals that accept Medicaid as a form of payment and/or the reluctance of many dental teams to treat individuals with certain I/DDs. Through a program not supported by Title V MCH funding, ODH collected data from the Elks visits in 2019, 2020, and 2021. The data was used to create The Elks Report. (Missouri DHSS (mo.gov) The report marked the first time in Missouri that data was been collected, analyzed, and disseminated in a formal report. This report is the only place to access dental information for cyshcn. The report surveyed 508 cyshcn in both 2019 and 2020. Whereas a 2018-19 Basic Screening Survey of 2,352 third graders showed that 30% of third graders without special health care needs had dental sealants, the Elks report showed that among the cyshcn surveyed, only 1% had dental sealants. Children and youth without special health care needs had an untreated decay rate of 29% compared to 39% among cyshcn. These statistics show more work needs to be done to provide oral health care to cyshcn.

 

Early Childhood Professionals

The OOC Quality Initiatives Section the DESE provides inclusion referral services, technical assistance, and training throughout the state to help families and caregivers of young children with special health care needs. United 4 Children contracted with the DHSS in FY21 and provided 138 on-site visits with 290.75 on-site visit hours. They provided 104 remote-only general technical assistance visits and 225 remote-only child-specific visits. Of the 29% of children/families who were referred for additional services at the 6-week follow-up, only 13.5% reported receiving additional services. An average of 84% of children served maintained or found new placements. Inclusion Specialists provided 46,799 direct outreach contacts in FY21.

 

Inclusion Specialists provide a variety of services for young children with special health care needs. The specialists:             

• Assist families with locating appropriate child care that will successfully support the individual needs of their child.
  • This includes providing families with a list of licensed or regulated child care facilities who have the ability to work with their child. We want parents to make the choice that best fits with their wishes, and by narrowing down who has the ability to accommodate a specific need, the specialists are able to save the families a lot of time and frustration.
  • When the list does not produce a facility that is able to accommodate a specific need, the specialists reach out to a program to discuss the requirements of the child. Inclusion specialists make site visits to the program to strategize on how the facility can make minor adaptations in order to successfully include the child.
  • They offer follow up technical assistance until the facility is fully equipped to meet the needs of the child.
• Provide training to caregivers to develop the necessary knowledge and skills to appropriately meet the needs of the child in care.
• Connect families with other community resources as appropriate.
• Provide general classroom as well as child specific observations. After the observations, the specialists can provide technical assistance to the child care providers regarding the needs of the group or child. They help develop strategies and offer training as needed to further the knowledge and skills of the caregivers. In FY21, a center in the Eastern Region reached out as a teacher was struggling with behavioral issues of a particular child. A specialist observed the classroom and facilitated the process of drafting an intervention plan specific to child. The teacher and director were eager and felt that the suggested strategies would promote positive change in the classroom and help during difficult transitions. In the Southwest Region, a specialist conducted a classroom observation and a child was referred to other services. Additionally, the teacher and director added onsite speech therapy for a child with a speech delay. There are similar stories from the different regions where a specialist observed and created intervention plans that directly correlated to a child’s behavioral or medical need. Providers, teachers, and directors are given these plans to follow, and it not only gives them a place to start but also gives them hope.

 

The Quality Initiatives Section continued to provide inclusion services to support children with special needs, which includes children with a perceived developmental disability and/or delay, health/mental health, or behavior issue. The Inclusion specialists assist families in locating appropriate care by providing resources and assistance so that families are educated to make decisions in the best interests of their family and child. They offer technical assistance to child care programs so that children with special needs can maintain placement as they grow and develop, thereby reducing preschool expulsion. Inclusion Specialists offer training to child care providers as new caregivers enter the workforce and as the needs within their programs change when new children are enrolled.

 

When providing inclusion services to families and children, specialists have identified that many of the children with behavior concerns have also experienced some form of trauma. Developing the child care workforce to better identify the signs of trauma in children helps providers better meet the needs of the children in their care. Inclusion Specialists have begun to deliver evidence-based training to child care providers and families in order to educate them on the effects of trauma in early childhood and to identify how children’s behaviors may be affected by trauma. The training further addresses the stress placed on children in the foster care system and ways caregivers can support children as they transition between homes.

 

In FY21, the State’s current Inclusion Support (IS) project was expanded to include the addition of an Inclusion Specialist and a Social-Emotional Learning (SEL) project, which is an additional component of the larger IS project. The IS project provides an element of prevention in the training delivered to teachers, and in the knowledge teachers gain from on-site consultation that can be carried over to new challenges. However, the primary focus of the IS Project is intervention. Inclusion Specialists are asked to help a family or a provider respond appropriately to a challenge occurring at a specific point in time. The intervention focuses on helping the teacher work with a particular child or situation. To most effectively prevent preschool expulsions and the short and long-term dangers they present, a more comprehensive and proactive program is needed. The SEL Project provides this support. A few of the main components of the program are:

• Four, day-long initial training sessions (one day a week for four weeks). The training focuses on an understanding of how children develop socially and emotionally, and how teachers can facilitate this development in real, practical ways. It is based on the research-based Pyramid and Conscious Discipline models.
• With family permission, the Ages and Stages Questionnaire: Social-Emotional (ASQ:SE) is administered to all children enrolled in classrooms participating in the project in order to identify children at greater risk of social-emotional delay. This could involve coordination with the Missouri Milestones Matter (MMM) project discussed in the Child Health domain.
• Completion of classroom action plans to address environment, relationships, and social emotional teaching strategies. Three specific pro-social skills are identified and taught to children. The action plan outlines individualized specific steps to be taken.
• Completion of individual plans for children identified as being at-risk.
• A minimum of four on-site observation/consultation visits from a Project Specialist over a nine-month period to facilitate implementation of plans, and support teachers through challenges that arise. Progress towards goals is made in between visits with sessions focusing on coaching specific strategies, observation for specific children, etc.
• Two Saturday half-day follow-up meetings to network and problem-solve with other participants.
• Administration of ASQ:SE at the conclusion of the project to all children screened at the beginning of the project and are still enrolled in the classroom.
• If all training/meeting components are completed, each participant receives a total of 32 approved training clock hours.
• Participants receive a comprehensive training manual and hands-on materials related to curriculum implementation.
• Program administrators attend a half-day session so they can support teachers’ learning.

 

The Child Care Health Consultation (CCHC) Program provided training and consultation to child care providers at regulated and unregulated child care facilities on topics around health and safety, which included topics related to young children with special health care needs such as autism spectrum disorder, asthma, food allergies, seizure disorders, traumatic brain injury, and diabetes. The CCHC program also provided training and consultation to child care providers on inclusion of young children with special health care needs in child care activities. The program also provided consultations for child care providers to assist in the development of individualized health care plans (IHPs) and making referrals to outside resources such as MO HealthNet for Kids, developmental screening, and WIC. The CCHC Program provided 56 hours of training and consultation for health care providers on special health care needs, inclusion, and referrals to WIC and MO HealthNet for Kids. The program also provided 38.5 hours of health promotion for children in child care that provided developmentally appropriate health and safety lessons on topics related to young children with special health care needs. One example of these health promotions is ‘Friends with Food Allergies’, where children are encouraged to show empathy and kindness to children with food allergies, to not share food with other children without adult permission, and how to recognize an allergic reaction and get help if one of their peers is having an allergic reaction. Other health promotion on this topic included bullying, positive behavior support, self-esteem, celebrating differences, and empathy. CCHC program trainings and services are inclusive of adults and children of all abilities. The program encourages family engagement in program services by inviting parents/guardians of children in child care to attend trainings and consultations, and health promotion provided to child care providers and children in child care respectively. The capacity for LPHAs to deliver CCHC program services was severely impacted by the ongoing pandemic.

The CCHC program increased access to information and resources regarding the physical and emotional care of young children with special health care needs, promoted family participation in community-based organizations, and increased inclusion of children with special health care needs in child care facility activities. As a result of these trainings, children with special health care needs are safer in their child care environments, and their physical, social, and emotional health is optimized. Child care providers are also more knowledgeable of services available within the community and can refer more children and family to health and safety services.
 

DESE is developing an early childhood system that is family friendly and ensures every young child receives services needed. The work undertaken by this new Office includes the development of an Early Childhood Integrated Data System and a coordinated Early Care & Education system with a place for every family to access resources and services that promote safe and healthy learning environments for young children by supporting ongoing community leader activities like stakeholder engagement, relationship building and coordination across the state. This work builds off work of the Early Childhood Comprehensive System (ECCS) that was led by DHSS for several years. A new grant, “ECCS Health Integration: Prenatal to 3 Program” for $255,600/year for the next 5 years, was awarded to Missouri in August 2021. This funding will support the ECCS program in leading the first integration of health needs, resources, and systems into the existing Statewide Early Care and Education (ECE) Strategic Plan and will build on current collaborative efforts to increase the impact for the prenatal to three population. The ECCS grant, in collaboration with the PDG B-5 grant, is currently conducting a system assets and gap analysis and network analysis of the early care and education and health care systems by the end of the second grant year. Upon its completion, DESE will work with the ECCS Advisory Council and other partners to determine the best way to integrate its findings into the strategic plan.

 

School Health

School nurses are a component of the medical home; assuring students have insurance, and that children with a potential for a life threatening event (such as a seizure, asthma flare, anaphylaxis event, alteration in blood sugar), or a special health care procedure (such as gastric feeding, catheterization, or dressing change) have written procedures and emergency action plans in place. These plans are developed in collaboration with the parent/guardian and approved by the medical provider.

 

The School Health Program (SHP) continued to provide consultation, training, resources, and support to Missouri’s school nurses on topics they encounter. SHP prepares an annual summary report from data collected by school nurses in the public, charter, private, and parochial schools, including the nurse to student ratio and the number of students with special health care needs and/or chronic health conditions. This report is shared with stakeholders to inform them about what students and school nurses need to promote student health. The SHP actively encouraged assessment of student insurance status and shared the data in the annual special health care needs/chronic health conditions report. (https://health.mo.gov/living/families/schoolhealth/pdf/studentswithdiseaseandconditions.pdf)

 

School nurses are also educated about Mo HealthNet and other community health resources, including FQHCs, in order to facilitate their role in promoting access to care and health services resources within a medical home model. Due to the pandemic, the SHP pivoted the annual workshop for new health office staff to a virtual format. The workshop provided training on hearing and vision screening, managing children with chronic health conditions in the school setting, writing emergency management and 504 plans, being a part of the Individual Education Plan (IEP) team, and developing IHPs for students. The SHP also provided guidance and consultation to all school nurses, referencing the Manual for School Health Guidelines, including a matrix of health care procedures permissible in the school setting. The SHP continued efforts to ensure that sessions offered at the Annual School Nurse Leader Collaborative, Spring School Nurse Association Conference, and the Coordinated School Health Coalition Conference are applicable to school health services, support best nursing practice, and actively promote the school nurse role in care coordination. During the pandemic, the SHP shifted to increased virtual learning opportunities and weekly office hours for lead school nurses. Office hour topics covered changes to Medicaid enrollment protocols during the pandemic, communication strategies. Additionally, there were discussions about the role of the school nurses in the virtual learning environment and adapting the IHP and the emergency action plan for school staff.

 

The SHP developed and piloted a new toolkit to support school nurses in parent interviews to develop effective action plans to address chronic health conditions in the school setting. The SN CHAT (School Nurse Chronic Health Assessment Tool) is a guide for conversations with the student’s caregiver to learn about the unique health needs of an individual student and develop a personalized emergency action plan for staff and when needed an IHP. The goal is to prioritize parent engagement and student safety, and baseline data is available from the pilot for the number of IHPs and Emergency Action Plans (EAPs) before the SN CHAT intervention. It is expected that the number of EAPs will increase.

 

The SHP partnered with school board associations, principals’ associations, Family and Community Trust as well as the MO HealthNet Division at DSS to promote access to care via Medicaid enrollment and awareness of FQHCs. The SHP continued to support and identify professional development opportunities for school health services staff by way of trainings, workshops, webinars and regional conferences to address Medicaid enrollment, Medicaid Managed Care, and other chronic health conditions.

 

The Missouri School Boards’ Association (MSBA) leads an initiative to routinely include special services representatives and nurses on schools’ emergency planning teams and for schools to consider the nature of disabilities and medical conditions represented by students and staff when creating, reviewing, and implementing emergency response plans. The SHP continued to engage and partner with MSBA on the emergency planning process for cyshcn. Work this year focused on the pandemic as it related to cyshcn. The SHP encouraged the utilization of MSBA’s Emergency Planning for Students with Special Needs Task Force resources to inform and support school districts in improving their emergency planning process by considering the unique needs of each person within the school community. The “Emergency Planning for Students with Special and Functional Needs within the Context of School and Community Planning” was created and distributed to schools throughout the state. The guide was presented at the Missouri Coordinated School Health Coalition Conference and the committee plans ongoing review of the guide to determine if revisions/updates are needed.

 

Newborn Screening

Since April of 2017, information about the importance of a medical home for children with and without special health care needs has been included in the Newborn Screening booklet and is distributed to new and expectant parents. The booklet is also distributed upon request to birthing hospitals, pediatric hospitals and clinics, LPHAs, WIC clinics, health care providers including midwives, high schools, home birthing centers, prenatal classes, businesses, and neonatal intensive care units. On average, approximately 4,000 booklets were requested by these entities per month.

 

The Missouri Newborn Hearing Screening Program (MNHSP) collaborated with Family Partnership to engage families in the Missouri Early Hearing Detection and Intervention (EHDI) system. Family Partners contacted parents of newborns who failed the newborn hearing screening to provide parent-to-parent support and encourage appropriate follow-up with a medical home. Family Partners continued to contact parents of infants newly diagnosed with permanent hearing loss to provide parent-to-parent support, review resources, and ensure awareness of the importance of the medical home in the care of a child who is deaf or hard-of-hearing. The Kansas City EHDI-Learning Community (KCEHDI-LC) worked towards increasing participation in the EHDI system while emphasizing the role of the medical home in management of the unique needs of infants with hearing loss through distribution of ten “EHDI Parent Resource Toolkit for Western Missouri” booklets and referring numerous families to the same booklet on the DHSS website.  

 

Local Public Health Agencies (LPHA)

The MCH Services Program continued contracts with the LPHAs that supported a leadership role for LPHAs at the local level to:

• Build community-based systems and expand the resources those systems can use to respond to priority MCH issues;
• Provide and assure mothers and children (in particular those with low income or limited availability to health services) access to quality MCH services;
• Reduce health disparities for women, infants, and children, including those with special health care needs;
• Promote the health of mothers and infants by assuring prenatal, delivery, and postpartum care for low income, at-risk pregnant women; and
• Promote the health of children by providing preventive and primary care services for low-income children.

 

The LPHAs’ efforts to fulfill the purpose of the MCH Services contract included activities and services that addressed the needs of cyshcn. One LPHA selected promotion of a medical home for children with and without special health care needs, ages 0 through 17, as the Priority Health Issue to be addressed in their FY2022-2026 MCH Services Contract Work Plan. The MCH Services provided education on medical home to the LPHA staff and technical assistance in the development of the contract work plan strategies, activities and system outcomes.

 

State Agencies and Partners

The overall goal of the Missouri Disability and Health Collaborative is to support individuals with intellectual disabilities to be included and have access to the full range of evidence-based physical activity and nutrition programs provided through public health programs within Missouri. Through the Missouri Disability and Health Collaborative, the DHSS-Bureau of Community Health and Wellness has continued to contract with the University of Missouri Kansas City Institute for Human Development to assist with reviewing and adapting existing nutrition and physical activity strategies to assure inclusivity of people of all abilities. Missouri has developed several strategies to increase access to healthy foods and safe places to be physically active. However, few of these strategies have been designed to be accessible to people with intellectual disabilities or with the specific health needs of people with intellectual disabilities in mind.

 

In addition to the programs at the DHSS, there are several initiatives that contribute to Missourians receiving coordinated, comprehensive, and ongoing health care services throughout the state. In October 2011, the CMS approved Missouri’s State Plan Amendment (SPA) establishing Medicaid reimbursement for health homes, making Missouri the first state in the nation to have an approved SPA for health home services. This first SPA established Community Mental Health Center (CMHC) Healthcare Homes serving individuals with serious mental illness. A companion SPA establishing Primary Care Health Homes (PCHH) in Missouri was approved in December 2011. Both SPAs were effective January 1, 2012. MO HealthNet, the DMH, and the community mental health systems collaborated to establish ‘health homes’ throughout the state’s 29 CMHCs. Missouri’s CMHC Healthcare Home Program was selected to receive the American Psychiatric Association’s 2015 Gold Achievement Award in the category of community-based programs. The PCHH initiative provides intensive care coordination and care management as well as addresses social determinants of health for medically complex individuals. One aspect of the program includes the implementation and evaluation of the Patient Centered Medical Home (PCMH) model. The program emphasizes the integration of primary and behavioral health care in order to achieve improved health outcomes. In addition, MO HealthNet employs Registered Nurse Case Managers in the Evidence-Based Decision Support Unit. The unit established a pilot case management project made up of a multidisciplinary team that includes clinicians. The purpose of the pilot is to build infrastructure to support participants. Participants are selected for the pilot by utilizing an algorithm that determines participants with high needs and expenditures. The initiative builds a collaborative resource network to identify available resources. Care plans are developed for each of the participants in the case management program. Missouri’s pediatric hospitals also provide services that support comprehensive, coordinated, and ongoing healthcare. The Journey’s Program at the University of Missouri’s Children’s Hospital helps coordinate care provided by a child’s health care professionals, community, and family to meet the physical, emotional, and spiritual needs of the child and family as they cope with complex medical conditions. Children’s Mercy Hospital in Kansas City and St. Louis Children’s Hospital provide family-centered care coordination through the Beacon Program and Clinic and the Pediatric Advanced Care Team (PACT) respectively.

 

The Childhood Lead Poisoning Prevention Program (CLPPP) staff continued to work with LPHAs and Mo HealthNet lead case managers to coordinate clinical and environmental services for families of children with elevated blood lead levels (EBL) in order to strengthen the role of primary care providers within the public health domain. Supporting public health relationships involving professionals with a variety of clinical and environmental expertise results in EBL declining more rapidly, therefore preventing further undesirable health effects. These supportive activities included:

• Leading education to health care providers, LPHAs, WIC programs, and many community activities;
• Documenting case managers, physicians, and other clinicians names and phone numbers in the records of children with EBL;
• Including Family Partners and representatives of various clinical and environmental disciplines when designing and planning new program strategies;
• Strategies to share and document pertinent case management information and actions across disciplines and with family/caregiver input resulted in provision of coordinated, effective, and efficient care; and
• Working with Family Partners to review program materials and planned activities.

 

In addition, CLPPP partnered with other Title V programs, health care providers, and DESE to establish well-coordinated efforts to provide early evaluation and referrals for services as well as ongoing monitoring for children with lead poisoning. Schools should have an early and ongoing role in the appropriate and timely follow-up of children with an EBL history. Schools can request, collect, and record EBL information for all children in their district. Therefore, increasing timely referrals to DESE allows children who have an EBL history to have a variety of expanded and ongoing evaluation, monitoring, and intervention services such as: school nurses, Parents as Teachers (PAT), First Steps Early Intervention Programs, Head Start Programs, and other Special Services that develop IEPs. DESE program staff provided lead awareness education for all families/children in their districts, from birth to high school graduation, regarding the potential adverse effects of lead on the developing infant and child. Additionally, they shared information on services which are available to families and children to decrease the potential ongoing exposures and detrimental effects of lead. They worked with children’s medical providers to assure that initial and ongoing health, developmental, behavioral, and cognitive assessments/evaluations were performed. DESE program staff either performed or referred children for various types of child health and developmental evaluations, and intervention services needed due to lead exposures that occur prior to and during their school years using IEPs and the many programs available through the school districts.

 

CLPPP staff also focused on lead hazard reduction in dwellings linked to a child with an EBL, including contracting with a licensed lead abatement firm in compliance with procurement processes. The program assisted low-income homeowners and landlords of subsidized housing to perform lead hazard reduction in dwellings linked to a child with an EBL. Funding was used to supplement training costs to encourage contractors to become licensed in lead abatement in which lack capacity. A recent national study shows that every dollar spent on lead hazard reduction has a $17 - $250 return on investment over the life a child.

 

*Please interpret with caution.  The width of the 95% confidence interval exceeds 20 percentage points or 1.2 times the percent value.  As a result, the percentage may not be reliable.