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.

 

The Bureau of Special Health Care Needs (SHCN) will continue to provide service coordination and conduct comprehensive assessments for participants/families, regardless of financial status. For participants/families who do not report having a medical home, Service Coordinators will provide educational materials to help them obtain coordinated, ongoing, and comprehensive care within a medical home. SHCN staff will receive training regarding the definition, principles, and key components of service coordination. SHCN staff and staff from contracted agencies will continue to discuss emergency planning with participants/families and provide them with materials to prepare for emergency situations to ensure safety and well-being during inclement weather and other potential situations. To ensure culturally competent services, SHCN will continue to utilize professional interpreters for phone conversations and home visits. Educational materials, forms, and letters will be translated and available in various languages to accommodate the population served. In addition, staff and Service Coordinators of contracted entities will have opportunities to participate in conferences and trainings focused on cultural diversity.

 

SHCN will continue to collaborate with the Department of Social Services (DSS), the Department of Mental Health (DMH), and the Department of Elementary and Secondary Education (DESE), as well as other external partners and agencies to: 1) obtain information about children and youth with special health care needs (cyshcn) who transition within the systems of care and 2) link participants/families with appropriate services. Service Coordinators will continue to discuss life transitions with participants/families to help prepare for changes and navigating systems and supports. For youth who receive in home services and are aging out of the Healthy Children and Youth (HCY) Program, SHCN will begin discussing options for adult services with the participant/family at least one year prior to the participant’s 21st birthday. In addition, SHCN will provide a list of participants who are aging out of the HCY Program with the Department of Health and Senior Services (DHSS) Division of Senior and Disability Services (DSDS)-Long-Term Services and Supports and DMH. SHCN will offer to conduct multi-agency transition meetings for participants who would be eligible for the Medically Fragile Adult Waiver (MFAW) Program after their 21st birthday in an effort to help them make informed decisions regarding services. SHCN staff and staff from contracted agencies will continue to access the MO HealthNet (Missouri Medicaid) information systems to determine the MO HealthNet status of participants and will refer participants/families who do not have MO HealthNet to DSS. In complex situations, SHCN will assist families by contacting DSS to expedite MO HealthNet applications and assist in resolving MO HealthNet access issues.

 

Service coordination is essential for people with complex conditions and needs. Service Coordinators for the Children and Youth with Special Health Care Needs (CYSHCN) and HCY programs will continue to complete Service Coordination Assessments (SCA) in collaboration with participants and families to address strengths and needs, which drives service plan development and implementation. The assessment tool includes medical home components that address whether a participant has:

1. A usual source of medical care when sick;
2. A usual source of preventive health care;
3. Visited a physician or specialist within the past year;
4. Health care providers that share information with each other and/or with non-medical providers;
5. Medical providers who spend enough time during visits, listening carefully, considering values and customs, providing needed information, and making the participant/family feel like a partner;
6. Knowledge on who to call for services;
7. The ability to get referrals when needed;
8. Received most services in the local community;
9. Adequate insurance to pay for needed services;
10. Access to language or mobility accommodations; and

 

The assessment tool also includes a component to assess if the participant/family feels like a partner with their SHCN Service Coordinator in making decisions regarding their services. In addition, the tool includes components to assess if participants/families are satisfied with general health services (physicians, hospitals, therapist, etc.), in-home provider agency services, and SHCN services. The SCA includes information regarding medical, dental, and vision insurance. SCA components related to adequate health insurance for cyshcn assess the following: if the insurance offers benefits and services that meet participants’ needs, if the cost is considered reasonable, if the plan allows participants to see the providers needed, and if participant had health coverage all of the last 12 months. The SCA also assesses if services are organized in an easy and accessible way for families of cyshcn. For participants who are 13 to 21 years of age, the SCA contains components to assess preparation for youth transitions including: if doctors or other health care providers talked about the changing health needs when the participant becomes an adult, if a plan for addressing changing needs has been developed, if doctors or other health care providers have discussed having the participant eventually see a doctor who treats adults, and if the participant has received vocational or career training to help prepare for a job.

 

SHCN Family Partnership

Family Partners will contact newly enrolled SHCN program participants to inform them of the Family Partnership Program and to increase awareness of the importance of a medical home for children with and without special health care needs. Family Partners will continue to share medical home information through their listservs, as well as at resource fairs, conferences, regional and statewide events, including the Parent-Caregiver Retreat. Family Partnership newsletters will keep families informed of statewide activities, as well as important information regarding supports available for families. The addition of a full-time Family Partnership Manager has strengthened the capacity of the Family Partnership Program to work closely with the Title V MCH core team and align efforts to implement medical home strategies. The Family Partnership Manager will continue leading the Family Partners in evaluating current activities and identifying future priorities related to medical home.

 

Family Partners will continue to be involved in a variety of initiatives. The Southeast Family Partner will continue to serve as the AMCHP Family Delegate for Missouri and will participate in family engagement activities within SHCN and Title V MCH programs. The Northeast Family Partner will continue to serve on the advisory committee for the Heartland Genetics Service Network and work with the St. Louis Resource and Respite Coalition.

 

SHCN plans to continue to utilize Title V MCH funds to support the printing and dissemination of Missouri Family to Family Information Center Life Course materials and resource folders for families of cyshcn.

 

Family advocacy is critical in building coordinated and comprehensive systems. The Early Childhood Comprehensive Systems Health Integration P-3 grant (ECCS HIP-3) partners with Title V MCH to maintain and support the Missouri Parent Advisory Council (PAC). Over the life of the grant, seven regional PACs will be established and supported and will feed into a larger statewide PAC. The PACs will inform early childhood policy and procedure at local, regional, and state levels. Historically, the PAC also developed opportunities for parent and family involvement in their communities and across the state. The expanded regional model of the PAC will ensure that it is more inclusive and representative of all Missouri families with diverse needs and backgrounds.

 

Dental Home

The Office of Dental Health (ODH) will continue to implement the Preventive Services Program (PSP) in Schools for the Severely Disabled under its ongoing agreement with DESE. The PSP provides an oral health screening by a dental professional, two applications of fluoride varnish for protection against tooth decay, and a referral to a local dental provider. The referral is designed to ensure identified needs are addressed and to link children to a dental home. Dental visits are recommended for all children at least once or twice annually and are especially important for children with special needs, 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. The ODH’s Oral Health Consultants will be traveling to the Schools for the Severely Disabled in order to screen and apply varnish as allowed. Consultants will also be available to advise on any dental issues students have. Oral health supplies, education, literature, and fluoride varnish will be available to any child who does not receive a dental screening. The ODH created an online screening survey form for the consultants to complete when they screen students. With those survey forms, the ODH will be able to determine which school has a higher participation rate and can look to that school nurse for advice on ways to increase participation at other schools with lower participation rates. The survey forms will also be used to create a one-page fact sheet/report that will be shared with DESE.

 

The ODH is working with the Missouri Coalition for Oral Health, which is coordinating collaborative efforts with 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.

 

The Elk’s Mobile Dental Program provides specialized dental services to individuals with Intellectual and Developmental Disabilities (I/DD). The program operates 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. General Revenue has historically supported the Elk’s Mobile Dental Program and pays for about 950 patient visits and 9,000 procedures. The FY24 proposed state budget includes increased funding for the Elks program. In addition to General Revenue, the Elk’s Benevolent Trust, a non-profit organization, also provides financial support for the program. The Trust provides supplemental funding so adults and children with disabilities can receive dental care. It is important to note that the Elk’s Mobile Dental Program also accepts Medicaid, which helps supplement the funding. Due to the shortage of dental professionals that are willing to accept Medicaid as a form of payment and/or the reluctance of many dental teams to treat individuals with certain I/DDs, the program is the dental home for some individuals.

 

Early Childhood Professionals

The Office of Childhood (OOC) Quality Initiatives Section within DESE provides inclusion referral services, technical assistance, and training throughout the state to help families and caregivers of cshcn.

 

Inclusion Specialists provide a variety of services for cshcn. The specialists:

• Assist families with locating appropriate child care that will successfully support the individual needs of their child.
  • This includes providing the families with a list of licensed or regulated child care facilities who have the ability to work with their child. This facilitates easy decision-making without the time and frustration of an extensive search.
  • When the list does not produce a facility that can accommodate a specific need, the specialists reach out to the program to discuss the requirements of the child in need of care. Inclusion Specialists make site visits to the program to strategize on how the facility can make minor adaptations 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 are able to provide technical assistance to 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.

 

The Quality Initiatives Section will continue 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 will continue to assist families in locating appropriate care by providing resources and assistance so that families are educated to make decisions in their best interests. They will continue to offer technical assistance to child care programs so children with special needs can maintain placement as they grow and develop, thereby reducing preschool expulsion. Inclusion Specialists will continue offering training to child care providers as new caregivers enter the workforce and as the needs within their programs change as new children are enrolled.

 

While 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 will help 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 Inclusion Services (IS) project listed above was expanded to include the addition of another Inclusion Specialist and a Social-Emotional Learning (SEL) 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 future 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. A more comprehensive and proactive program is needed to most effectively prevent preschool expulsions and the short and long-term dangers they present. The SEL Project provides this support. A few of the main components of the program are:

• Four, daylong initial training sessions (one day a week for four weeks). The training focuses on understanding 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 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 will be 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 will be made in between visits with sessions focusing on coaching specific strategies, observation of specific children, etc.
• Two half-day follow-up meetings on Saturday to network and problem-solve with other participants.
• Administration of the ASQ:SE at the conclusion of the project to all children who were screened at the beginning of the project and are still enrolled.
• If all training/meeting components are completed, each participant receives 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 will provide consultation and training for child care providers at regulated and unregulated child care facilities on topics around health and safety, which include topics relevant to young children with special health care needs such as: autism spectrum disorder, asthma, food allergies, seizure disorders, Tourette’s syndrome, traumatic brain injury, diabetes, and inclusion. The CCHC Program will continue to: 1) provide consultations for child care providers to assist in the development of individualized health care plans (IHPs) with input from other health specialists and parents/guardians, and 2) assist with referrals to outside resources such as MO HealthNet for Kids, immunizations, developmental screening, and WIC. The CCHC Program will also continue to provide developmentally appropriate health promotion presentations for children in child care on topics including: safe interactions with children with food allergies, bullying, positive behavior support, self-esteem, celebrating differences, and empathy. CCHC Program services will continue to provide evidence-based and educational materials regarding the physical and emotional care of cshcn, optimize the physical, social, and emotional health of young children with special health care needs in the child care setting, and promote participation in community-based organizations. CCHC Program services will continue to be required to be inclusive of adults and children of all abilities, and family participation and engagement will be encouraged during all program services.

 

School Health

The School Health Program (SHP) considers school nurses as a component of a medical home; assuring students have insurance, and children with a potential for a life threatening event (such as a seizure, asthma flare, anaphylaxis event, alteration in blood sugar level), 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 a medical provider. The SHP will continue to promote the School Nurse Chronic Health Assessment Tool (SN-CHAT) to engage school nurses and parents in developing emergency action plans and IHPs.

 

The state school nurse consultant will continue to serve on the faculty for the Autism ECHO (Extension for Community Healthcare Outcomes). This learning opportunity shares autism specialist knowledge in a virtual learning network with a panel of interdisciplinary providers. Participants learn about best practices and evidence-based care for children with autism and developmental behavioral concerns, including detecting mental health concerns, diagnosing and treating common mental health disorders, making appropriate referrals, and supporting kids and teens in their treatment for mental health disorders. The ECHO meets every other week during the school year and targets school nurses and support staff.

 

The SHP will continue to provide consultation, training, resources, and support to  school nurses on health-related topics. The SHP prepares an annual summary report from data collected by school nurses in public, charter, private, and parochial schools. This data includes the nurse to student ratio, the number of students with special health care needs and/or chronic health conditions, and an assessment of student insurance status. This report is shared with stakeholders to inform them about the needs of students and school nurses. School nurses will continue to receive print materials, video presentations, and virtual conferences about MO HealthNet and other community health resources, including FQHCs to facilitate their role in supporting families to access health care and other health care services and strengthen their role in the medical home model. The SHP will continue to conduct an annual workshop for new health office staff. This three-day workshop provides training on hearing and vision screening, managing children with chronic health conditions in the school setting, guidance for writing emergency management and 504 plans, being a part of the Individual Education Plan (IEP) team, and developing IHPs for students. The SHP also provides guidance and consultation to all school nurses, referencing the “Manual for School Health Guidelines,” which includes a matrix of health care procedures permissible in the school setting. The SHP will continue 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 nursing best practice and actively promote the school nurse role in care coordination. A new online program, “just in time resources”, Show Me School Health, is being launched in October 2023. This will be a website that houses information about specialized health care procedures in the school setting that a school nurse will need to be familiar with and have the ability to write an individualized health care action plan for, as well as a training and delegation plan. Tasks could be ambulation, transfer, diapering, tracheostomy suctioning, tube feeding, stoma care, catheter care, diabetes management, nebulizer treatments, oxygen and more. We will expand our training to developing 504 plans for students needing an accommodation in the school setting and the role of the school nurse on an IEP team. This program will also offer “simulation labs” for school nurses in rural settings.

 

The SHP will continue to partner with school board and principals’ associations as well as the Missouri’s Family and Community Trust and the MO HealthNet Division to promote access to care via Medicaid enrollment and awareness of FQHCs. The SHP will continue to support 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 management of cyshcn and chronic 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 presented by students and staff when creating, reviewing, and implementing emergency response plans. The SHP will continue to engage and partner with MSBA on the emergency planning process for students with special needs. The SHP will encourage the utilization of MSBA’s Emergency Planning for Students with Special Needs Task Force resources to inform and support districts in improving their emergency planning process by considering the unique needs of each person within the school community.

 

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 will continue to be distributed to new and expectant parents. The Newborn Screening booklet is distributed upon request to birthing hospitals, pediatric hospitals and clinics, neonatal intensive care units, LPHAs, WIC clinics, businesses, health care providers at high schools, home birthing centers, prenatal classes, and obstetrician and gynecological clinics. On average, approximately 4,000 booklets are requested by these entities per month. In addition, the Newborn Screening Program will continue to distribute an electronic parent survey. The survey will continue to include questions about the medical home in order to provide insight into parents’ definitions of their child’s medical home. The survey will be provided to parents whose child was diagnosed with a disorder identified as a result of a high risk presumptive positive newborn blood spot screen, parents whose child’s blood spot screen was low risk and required a repeat screen, and a random sampling of parents whose child’s screen was normal.

 

The Missouri Newborn Hearing Screening Program (MNHSP) will continue to collaborate with the Family Partnership Program to engage families in the Missouri Early Hearing Detection and Intervention (EHDI) system. Family Partners who are parents of children who are deaf or hard-of-hearing will contact parents of newborns who failed the newborn hearing screening to provide parent-to-parent support, review resources, and encourage appropriate follow-up with the medical home. Family Partners will continue to emphasize the role of the medical home in management of the unique needs of an infant with hearing loss through distribution of the “EHDI Parent Resource Toolkit for Western Missouri.” Additionally, the MNHSP will recruit a pediatrician to the program’s advisory standing committee to assist with incorporating medical home approaches in MNHSP activities.

 

Child Lead Poisoning Prevention

Childhood Lead Poisoning Prevention Program (CLPPP) staff will continue to work with LPHAs and Mo HealthNet lead case managers to coordinate clinical and environmental services for families of children with elevated blood lead (EBL) levels 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 a rapid decline in EBL, therefore preventing further undesirable health effects. These supportive activities will include:

• 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 the disciplines and with family/caregiver input to result in coordination of care and more effective, efficient care; and
• Working with Family Partners to review program materials and planned activities.

 

The CLPPP will partner with other Title V MCH programs, health care providers, and DESE to establish well-coordinated efforts to provide early evaluation and referrals for services as well as ongoing monitoring and services for children with lead poisoning. Schools should have an early and ongoing role in the appropriate and timely follow-up of children with a history of EBL. Schools can request, collect, and record EBL information for all children in their district. Therefore, increasing timely referrals to DESE allows children with a history of EBL to access a variety of expanded and ongoing evaluation, monitoring, and intervention services such as school nurses, Parents as Teachers, First Steps Early Intervention Programs, Head Start Programs, and other special services to develop IEPs. DESE program staff can provide 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. They also share information on services available to families and children to decrease the potential ongoing exposure and detrimental effects of lead. They can work with children’s medical providers to assure that initial and ongoing health, developmental, behavioral, and cognitive assessments/evaluations are performed. They can perform or refer 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.

 

CLPPP staff will partner with LPHAs and Head Start programs to ensure blood lead testing is offered to vulnerable populations. Early identification of blood lead levels is critical to ensuring children are accessing services. The CLPPP staff will partner with LPHAs to provide point of care testing devices in high-risk counties to increase identification of children at risk for lead poisoning and thus reduce the effects that can lead to special health care needs.

 

Local Public Health Agencies (LPHA)

The MCH Services Program will continue contracts with the LPHAs to support 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 access 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.

 

LPHAs efforts to fulfill the purpose of the MCH Services contract will include activities and services that address the needs of cyshcn. One LPHA, Tri-County Health Department has selected to work on the priority health issue of children with and without special health care needs to ensure coordinated, comprehensive, and on-going health care services for children, provide education about special health care needs, and promote the medical home approach. In coordination with the WIC Program, the Tri-County Health Department assesses the medical home status of children ages 0-5 years. The health department has implemented an electronic health record to maintain accessible, comprehensive, and complete health records that can be shared with other providers. They plan to train providers and those in the community on the medical home approach and increase the number of children and families that have a “care notebook.” This will assist families and caregivers in maintaining a record of their child’s care, services, and providers, which can be taken to all medical appointments, therapies, conferences, and vacations to have a shared responsibility— ensuring the child receives the right care, at the right time, and in the right place. The MCH Services Program has worked with the Tri-County Health Department to research and develop a “Care Notebook”, currently in the piloting phase with three different families through the Health Department. The goal is to gain insight from those with lived experience to guide completion of the final version.

 

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. Through the Missouri Disability and Health Collaborative, the DHSS-Bureau of Community Health and Wellness will continue to contract with University of Missouri Kansas City Institute for Human Development (UMKC-IHD) 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 DHSS, there are several other initiatives that contribute to Missourians receiving coordinated, comprehensive, and ongoing health care services. In October 2011, the Centers for Medicare and Medicaid Services (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, 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 PCHH includes the implementation and evaluation of the Patient Centered Medical Home (PCMH) model. PCHH emphasizes the integration of primary and behavioral health care in order to improve 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 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 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 similar services, such as Family Centered Care Coordinators, The Beacon Program and Clinic, and the Pediatric Advanced Care Team.

 

Other Title V MCH Activities Related to cyshcn

 

SHCN coordinates programs and initiatives focused on developing, promoting, and supporting community‐based systems that enable the best possible health and greatest degree of independence for Missourians with special health care needs. SHCN accomplishes its mission in collaboration with families, health care providers, and other community, state, and national partners. SHCN values family partnerships in decision-making and satisfaction with the services they receive. SHCN programs and initiatives include the ABI Program, CYSHCN Program, HCY Program, Family Partnership Initiative, and MFAW Program. Bureau programs and initiatives that serve cyshcn include the CYSHCN Program, the HCY Program, and the Family Partnership Initiative. In addition to these programs and initiatives, SHCN provides funding to Missouri Assistive Technology for the Kids Assistive Technology (KAT) project, which improves access and reduces barriers for cyshcn. SHCN also facilitates the Missouri Brain Injury Advisory Council and administers the Federal Traumatic Brain Injury State Partnership Grant.

 

The CYSHCN Program provides statewide assistance for individuals from birth to age 21 who have or are at increased risk for a medical condition that may hinder their normal physical growth and development and who generally require more medical services than other children and youth. The program focuses on early identification and service coordination for individuals who meet medical eligibility guidelines. As payer of last resort, the CYSHCN Program provides limited funding for medically necessary diagnostic and treatment services for individuals whose families also meet financial eligibility guidelines. To be eligible for the CYSHCN Program, participants must: be a Missouri resident, be between birth to 21, have an eligible special health care need condition (such as cerebral palsy, cystic fibrosis, cleft lip and palate, hearing disorders, hemophilia, paraplegia, quadriplegia, seizures, spina bifida, and traumatic brain injury), and meet financial eligibility guidelines for funded services (family income at or below 185% of the Federal Poverty Guidelines). The CYSHCN Program provides two primary services: Service Coordination and Funded Services. Service coordination is provided to all participants, regardless of financial status, including: outreach/identification and referral/application, eligibility determination, assessment of needs, resource identification, referral and access, family support, service plan development and implementation, monitoring, and evaluation, and transition/closure. SHCN maintains contracts with multiple LPHAs to provide service coordination for the CYSHCN Program. CYSHCN Service Coordinators complete comprehensive individual assessments during annual home visits to identify each participant’s/family’s unique needs and assist the family with resource identification and referral to ensure their needs are met. In addition to service coordination, limited funding (up to $25,000 annually per participant) is available for medically necessary diagnostic and treatment services for participants whose families meet financial eligibility guidelines. Funded services may include but are not limited to: doctor visits, emergency care, inpatient hospitalization, outpatient surgery, prescription medication, diagnostic testing, orthodontia and prosthodontia (cleft lip/palate only), therapy (physical, occupational, speech, and respiratory), durable medical equipment, orthotics, hearing aids, specialized formula, and incontinence supplies. Service Coordinators assist participants/families with resource identification and referral. All third party liability is exhausted prior to accessing CYSHCN program funds. Direct care diagnostic and treatment services are supported through state funds. Service coordination is supported through state funds, Medicaid, and the Title V MCH Block Grant.

 

SHCN administers the HCY Program through a cooperative agreement with MO HealthNet. To be eligible for the HCY Program, participants must be a Missouri resident, be between birth and 21 years, need medically necessary services, and be enrolled in the MO HealthNet fee for service system (not the MO HealthNet Managed Care Plans). The HCY Program provides service coordination that involves: evaluation and needs assessment, identifying and accessing service providers, service plan development and implementation, coordination of services through resource identification and referral, family support, assisting in establishing a medical home, transition planning, and prior authorization of medically necessary services (private duty nursing, advanced personal care, personal care aide, skilled nursing visits, authorized registered nurse visits, and administrative case management). SHCN Nurse Service Coordinators monitor services through assessments, regular home visits, medical records, and care plan review. The HCY Program is primarily supported through Medicaid funds with secondary support through state and Title V MCH Block Grant funding.

 

The SHCN Family Partnership enhances the lives of individuals and families impacted by special heath care needs by providing resources and information to empower families to live a good life. The Family Partnership hosts events to benefit families through development of leadership skills, networking among peers, and staying current with trends and issues regarding special health care needs. Each Family Partner is a parent of a child or youth with special health care needs and is well equipped to assist families in exploring options and solutions. The SHCN Family Partnership is funded primarily through the Title V MCH Block Grant and secondarily through the HRSA Universal Newborn Hearing Screening and Intervention Program Grant. Additional information about the SHCN Family Partnership can be found in the Family Partnership section of the grant application.