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

According to the 2016-2017 National Survey of Children’s Health (NSCH), an estimated 48.6% of MO children with special health care needs (CSHCN) had a medical home in comparison to 43.2% nationwide. In addition, the percentage of CSHCN with a medical home varied by different socioeconomic characteristics. Non-Hispanic White CSHCN in Missouri (47.6%) less frequently had a medical home than their counterparts nationally (48.3%). Nationally, younger children 0-5 years (42.7%) had lower percentages of having a medical home when compared to 12-17 year olds (45.4%). In Missouri, children 0-5 years (60.6%) had higher percentages of having a medical home compared to 12-17 year olds (40.1%). In addition, MO CSHCN Medicaid recipients were less likely to have a medical home (46.4%) than their privately insured counterparts (56.7%). However, the percentage for MO CSHCN Medicaid recipients that had a medical home was higher than for their national counterparts (36.4%). College graduate households in Missouri (53.2%) had a lower proportion than those with some college (60.6%) having a medical home, but a higher proportion than high school graduate households (42.1%). This differs from the national trend where college graduate households (51.0%) have a higher proportion than those with some college (43.3%) and high school graduates (32.7%). Single mothers (65.5%) had a higher proportion of CSHCN with a medical home than two-parent married households in Missouri (51.9%).

Among children without special health care needs (non-CSHCN), 49.8% received care through a medical home nationally, compared with 51.4% in Missouri, and this rate is below the HP2020 target of 63.3%. As was the case with MO CSHCN, the proportions of MO non-CSHCN also varied by sociodemographic characteristics. Non-Hispanic Whites (57.0%) had the highest proportion receiving care within a medical home, compared to Hispanics (41.0%) and non-Hispanic Blacks (30.0%). Non-Hispanic blacks also had a lower percentage in MO than they did nationally (40.0%). Children from single parent households (40.7%) less frequently had a medical home than their counterparts from married households (58.2%). In Missouri 55.7% of children, ages 0-5 years had a medical home. This percentage is higher than for children 6-11 years old (47.8%) and 12-17 years old (49.5%). This is also greater than the proportion for children aged 0-5 years nationally (51.8%). Furthermore, privately insured children (60.7%) were more likely to receive care in a medical home than uninsured (32.4%) and Medicaid insured children (37.4%). College graduate households in Missouri (66.8%) had a higher proportion than those with some college (41.0%) and high school graduate households (35.4%). This was also higher than the national proportion for college graduate households who have a medical home (60.8%).

Since the first American Academy of Pediatrics (AAP) policy publication in 2002 and subsequent reaffirmation in 2008 about the definition of Medical Home, it has become an integral part of health care provided to women, children and all adults. While it is important for all children to have a medical home, it is particularly significant for CYSHCN populations considering the medical needs of these children and the challenges associated with providing a high level of care for these children. The AAP statement describes care in a medical home as accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. The Missouri Department of Health and Senior Services (DHSS) supports and educates families about the importance of developing a partnership with health care professionals and obtaining a medical home.

The Bureau of Special Health Care Needs (SHCN)

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 management considers concepts from the Standards for Systems of Care for Children and Youth with Special Health Care Needs for programmatic planning and policy development to enhance comprehensive services. SHCN values that families partner in decision making and are satisfied with the services they receive. SHCN programs and initiatives include the Adult Brain Injury (ABI) Program, Children and Youth with Special Health Care Needs (CYSHCN) Program, Healthy Children and Youth (HCY) Program, Family Partnership Initiative, and Medically Fragile Adult Waiver (MFAW) Program. Bureau programs and initiatives that serve children with special health care needs 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 project, which improves access and reduces barriers for children and youth with special health care needs. SHCN also facilitates the Missouri Brain Injury Advisory Council and administers the Federal Traumatic Brain Injury State Partnership Grant.

The SHCN CYSHCN Program provides assistance statewide 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 require more medical services than children and youth generally. 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 age birth to 21, have an eligible special health care need (conditions 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 and includes: outreach/identification and referral/application; eligibility determination; assessment of needs; resource identification, referral and access; family support, service plan development/implementation; monitoring and evaluation; and transition/closure. SHCN maintains contracts with multiple local public health agencies (LPHA) to provide service coordination for the CYSHCN Program. CYSHCN Service Coordinators complete comprehensive individual assessments during annual home visits to identify each participant/family’s unique needs and assists 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. The CYSHCN Program is payer of last resort. Service Coordinators assist participants/families with resource identification and referral. All third party liability is exhausted prior to accessing CYSHCN funds. Direct care diagnostic and treatment services are supported through state funds. Service Coordination is supported through state funds, Medicaid, and MCH Title V Block Grant.

SHCN administers the HCY Program through a cooperative agreement with MO HealthNet (Missouri Medicaid). The SHCN HCY Program provides service coordination and authorization for medically necessary services for MO HealthNet recipients with special health care needs from birth to age 21. Service coordination includes assessment through home visits and links to services and resources that enable individuals to remain safely in their homes with their families. Authorized in-home services may include personal care, nursing care, and skilled-nursing visits. To be eligible for the SHCN HCY Program, participants must: be a Missouri resident, be birth to 21, have a need for medically necessary services, and be enrolled in the MO HealthNet fee for service system (not enrolled in the MO HealthNet Managed Care Plans). Administrative Case Management is provided by SHCN Nurse Service Coordinators to all SHCN HCY participants. SHCN Nurse Service Coordinators monitor services through assessments, regular home visits, medical records, and care plan review. Service coordination includes: evaluation and assessment of needs, 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). The HCY Program is primarily supported through Medicaid funds with secondary supports through state funding and MCH Title V Block Grant.

The SHCN Family Partnership strives to enhance the lives of individuals and families impacted by special heath care needs, 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 help families explore options and solutions. The SHCN Family Partnership is funded primarily through the MCH Title V 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.

Medical Home Strategies

SHCN Initiatives

SHCN provided service coordination for participants and families, conducting comprehensive assessments in collaboration with participants and 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 a culturally competent, collaborative, proactive and comprehensive health care process which includes assessment through home visits and links to services and 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 2018, 98% of SHCN participants enrolled in the CYSHCN Program, HCY Program, and MFAW Program reported having a medical home. For participants/families who did not report having a medical home in the assessment process, Service Coordinators provided educational materials to help children with special health care needs obtain coordinated, ongoing , comprehensive care. SHCN utilized professional interpreters for phone conversations and home visits. In 2018, SHCN had six documents available in six languages (Spanish, French, Somali, Vietnamese, Swahili, and Burmese) and seven additional documents available in various languages (Spanish, Somali, Vietnamese, Russian, Bosnian, Burmese, and Arabic). 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, assuring 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 Healthy Children and Youth (HCY) Program, SHCN collaborated with management staff of the DHSS, Division of Senior and Disability Services (DSDS) and the Missouri 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, with three separate service structures and eligibility processes. SHCN Service Coordinators took the lead in working with participants/families to schedule transition meetings with staff from DHSS, DSDS, and DMH. The transition meetings were coordinated to accommodate the participants’/families’ needs, and usually occurred in their homes. 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 and conversations assisted participants/families in obtaining information to identify options available and helped participants/families make informed decisions regarding services.

In Missouri, people who are aged, blind, or disabled are given the option to utilize Managed Care Medicaid or fee for service Medicaid. 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 be given an opportunity to choose either Managed Care or fee for service. Ongoing communication between MO HealthNet, 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 their services. Not all fee for service Medicaid provider agencies are contracted with all 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 there were changes in coverage. In addition, for participants who do not receive in home services through the HCY Program, SHCN provided MO HealthNet with enrollment information on a weekly basis to ensure participants of the CYSHCN Program were provided an 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 the availability of essential services.

In State Fiscal Year 2018, Service Coordinators for the CYSHCN and HCY Programs completed the Service Coordination Assessment (SCA) with the program participants and families. The SCA includes components consistent with the Federal data collection regarding participants and families reporting partnering in decision making. A total of 93% of SHCN participants and families enrolled in the ABI, CYSHCN, HCY, and MFAW Programs reported that they were ‘very satisfied’ with SHCN services. SHCN collaborated with partners to coordinate services for children with special health care needs. SHCN Service Coordinators and Family Partners referred participants and families to MO HealthNet and assisted participants and families in navigating the Medicaid system as appropriate. 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 children and youth with special health care needs. 

Service totals for SHCN SFY18 included:

• CYSHCN Program served 879 children and youth with special health care needs.
• HCY Program served 1,769 children and youth with special health care needs.
• Family Partnership served 3,876 individuals.

SHCN contracts with MO Kids Assistive Technology (KAT) for improved access and independence of children and youth with special health care needs. In Federal Fiscal Year 2018, the assistive technology services and devices provided through KAT were coordinated with a total of 76 entities (families, medical professionals, Service Coordinators, and schools) for 27 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 16 different sources, totaling $200,061.08 to supplement MCH funds. Communication with families, contractors, and Service Coordinators ensured that the projects were completed satisfactorily and according to the Americans with Disabilities Act.

Family Partners conducted research of medical home resources to expand their knowledge of the medical home concept. The Family Partners utilized this information to develop materials for dissemination to families to raise awareness of the importance of a medical home for all children. The medical home brochure was shared with 142 family members and professionals attending the Family Partnership Parent and Caregiver Retreat on September 7-8, 2018. The Family Partners facilitated a networking lunch ‘n learn with families and professionals in attendance to provide an update on the medical home process and discuss the importance of a medical home utilizing the materials developed. Additionally, families who attended the Retreat were provided with a tote, flash drive, and notebook (with the medical home components printed on the cover). The items were provided to assist families in keeping their children’s health care information organized and accessible for visits with medical providers and to promote shared plans of care.

The 17th annual Special Health Care Needs Family Partnership Parent and Caregiver Retreat was held September 7-8, 2018 at The Lodge of Four Seasons in Lake Ozark, Missouri. The total attendance at the Retreat was 142 individuals; 95 parents or caregivers of children and youth with special health care needs and 47 professionals. The Friday evening activities began with the Be Strong Families' Vitality Café model which was used as a method of exploring and enhancing vitality within six domains: Physical, Mental, Social, Financial, Environmental, and Spiritual. Through the Vitality Cafe conversations, attendees were given the opportunity to share information, identify and build new strategies to enhance vitality and health, and learn how to implement the model with other families. The Retreat also offered a resource room for families to speak directly with experts from a variety of agencies to provide answers to questions and offer resource information on topics important to families. The Retreat offered an opportunity for parents to network with one another and share their experiences while also providing sessions to educate families on topics such as:

• Understanding the differences between guardianships and conservatorships so families can make informed choices for their family;
• Sharing the ‘formula for happiness’ to assist families in staying positive and creating a better life for their family;
• Assistive technology information and services available to families including the ten free services available to Missourians with disabilities;
• Strategies to prepare their homes from the ravages of fire and helpful ways that those individuals with special needs or disabilities can safely escape their home.  The session also discussed the proper installation of smoke detectors and developing a successful escape plan and having a safe meeting spot for families;
• Addressing communication options and the importance of helping a child develop a means of communicating with others;
• The four common themes of overcoming struggles in life:  faith, communication, selflessness, and trust as well as the power of language and how it affects these four themes;
• Knowing about behaviors, what the Individual Education Plan (IEP) team's role is in behaviors, and positive behavior interventions;
• Understanding an audiogram which is the gold standard for describing hearing loss. The session further explained the parts of the audiogram and what the results recorded on the audiogram mean in terms of everyday hearing ability; and
• Assisting adults in Missouri build healthier, more stable couple and family relationships when experiencing high levels of daily and chronic stress.

Families who participated in the Retreat completed an evaluation form. Additional comments on the evaluations included:

• Thank you. It was a wonderful, relaxing and empowering weekend. I am so thankful for this retreat and the time I have to reflect on my amazing and full life.
• Great info and positive input from other families.
• Guardianship is a hot topic for me right now-the session was very helpful in identifying things I understood and those things I didn't understand. This is not a topic I want to get wrong.
• That there are many other parents that feel the burn out and get overwhelmed and that (it) is okay to ask for help.
• My son will be transitioning to adulthood before we know it. The topic about guardianship was helpful in preparing for the future.
• The different resources that were available and new technology.
• Learned the difference between power of attorney & guardian & Conservatorship.
• Loved the opening night. Thought provoking discussions about self-care & its domain.
• I learned that there are resources and adaptive equipment available to help my child learn to communicate.
• We need to remember to take care of ourselves too.
• I learned how to understand and accept your new normal and the key points in a relationship that can make it work.
• Great resources of services & devices available to us. Wonderful explanations related to hearing loss issues.
• My life has recently changed from the loss of our son but I am leaving, knowing I am not alone or lost.
• Honestly, having time to think & communicate without distraction is key. My wife and I have a lot of things coming at us and this retreat has been unifying and has helped cut through things that are not important but demand attention. This time away has been invaluable.
• I will probably be even more assertive and confident in advocating for my son at school. I will also look into more technology to aide in my son's independence.
• Gave me ways to deal and places to get help. And new friends.
• I have gained more knowledge to prepare me & my child for our future.
• I am a huge parent advocate and I am working hard to teach my children to self-advocate. But what I learned is that self-care is a form of advocacy and that I need to teach them to take care of themselves by taking care of myself.
• Better decision making due to direct information. Made professional & personal connections that will go beyond retreat.
• I will look up resources before I need them so I am better prepared for the future.
• I will be able to get better services for my son due to the info & resources received.
• It helps me think that I am not alone in my struggles that even though parents/caregivers who have special needs children are somehow confined in a small community, it enables me to value self-care as it is necessary for me to care for my child.
• A wonderful resource, so relaxing and educational. Very much needed time to be away. We will attend again!
• I enjoyed the sessions and all the people I met. I always learn something new every time I attend.
• I thoroughly enjoyed this retreat. It is a release and I feel so good about it.
• It is so wonderful. Thanks for caring about us.
• This is such a strengthening conference wrapped up in a retreat, which really energizes and helps us go back into the battle zone.

The Family Partners also shared about their experiences at the Retreat:

• The retreat gives me a chance to engage with families in my region face to face and find out where they are in their families’ journey. I get to hear what their needs are first hand and what I can do to better assist them. (Southwest Family Partner)
• At our Parent and Caregiver Retreat, I had lunch with a family who were grieving the loss of their son. This is one of my favorite moments as a family partner, because I was able to offer them support and help them with their grieving process just by listening. I received hugs from both parents and they told me “Thank You” for just listening. They didn’t want anyone to fix them or tell them everything would be ok. They just needed someone to let (them) talk about their son and just listen. (Southwest Family Partner)
• At the 2018 Parent and Caregiver Retreat, I had a family thank me personally for all of the attention to detail this year and it was their third year attending. They asked me what breakout sessions I was co-hosting so they could follow me the whole day. It means so much to see the joy we bring to Missourian’s faces and the connections we make at the Retreat are mutually beneficial and priceless. (Southeast Family Partner)
• A family I met at the retreat called me two times after the retreat to tell me they saw my family in the newspaper and that my family continually inspires theirs. (Southeast Family Partner)

Beyond the Family Partnership Parent & Caregiver Retreat, the Family Partners interact with parents and caregivers throughout the year. The Family Partners were asked to summarize successes from the past year. Their comments are listed below.

• I have been able to provide families with resources and guide them through various life events. I helped a family through the adolescent to young adult transition by providing them with the information on how to apply for Supplemental Security Income (SSI), Vocational Rehab services, pediatric to adult healthcare, and supports they would need. (Southwest Family Partner)
• Being a Family Partner never stops for me because it is my life. Even when I’m on vacation my daughter and family bond with people in ways I never thought possible. On vacation in Colorado my daughter connected with a little girl who had cancer. Even though I couldn’t help her family find resources in that state, I was still able to offer peer support and show empathy without sympathy. I still talk to this family at least once a month and it’s been over a year since we met. (Southwest Family Partner)
• A common request for referrals are helping families to incorporate socialization into their lives. My favorite this past year was directing a family to Challenger baseball, a sport that the family never thought their son would be able to play. (Southeast Family Partner)
• Family Partnership is beginning to be a household resource for families and organizations in the Northeast. One such example is Family Partnership received a call from the Woman’s Immigration Organization in St. Louis. They had a family that had two children with special needs. The family only spoke Arabic. Because they received citizenship they qualified for Medicaid. Due to the language and customs barriers the family was having trouble knowing what, if any, assistance was available. They spoke with their host who somehow came across my name.  The host contacted me and we were able to get the family services with the help of an interpreter. (Northeast Family Partner)
• Families that we serve are often financially strapped. Things like Christmas gifts are things they cannot afford. Because of networking with other organizations, several families were adopted and were able to have presents for their family. (Northeast Family Partner)
• While some of the families we serve own their homes, they do not have the funds for repairs or upgrades to make the house accessible for the participants. Many families in my region have had repairs or upgrades done to their homes thanks to resources that Family Partnership was able to provide. (Northeast Family Partner)
• I continue to collaborate with Heartland Genetics to help families of children with complex medical needs. Meetings with local hospital staff and other organizations, such as Missouri Family to Family, has continued to help strengthen the partnership of these organizations and provide Family Partnership with additional contacts to families looking for help. (Northeast Family Partner)
• I continue to collaborate with over 50 different organizations that work with individuals and families with special needs. This is done by being involved in different collaborations such as the St. Louis Family Resources and Respite Coalition and the Special School District Collaboration. (Northeast Family Partner)

The Southwest Family Partner serves as the Association for Maternal & Child Health Programs (AMCHP) Family Delegate and attended the AMCHP Conference in Washington D.C., February 9-13, 2018. She connected with other family delegates from other states and was able to share an update about the Family Partnership at the Region VII networking meeting. Family leaders asked for more information on family engagement activities and complimented Missouri for the work we are doing. The Program Manager of Family Engagement at the University of Iowa requested information and ideas about the Parent and Caregiver Retreat that the Family Partners in Missouri plan yearly. The Southwest Family Partner was able to share information to get them started with Iowa’s first caregiver retreat. The Southwest Family Partner also networked with professionals from Family Voices, family leaders from North Carolina and Arkansas, as well as many others. The Southwest Family Partner was able to share resources that were beneficial with the other Family Partners in Missouri. She also attended valuable training sessions and gained a lot of great insight, such as Iowa’s Family Leadership Curriculum. The Southwest Family Partner has built networks and is able to collaborate with other states for resource information or help as needed.

As the Family Delegate for the state of Missouri, the Southwest Family Partner has participated in the Family Engagement Community of Practice forum with other people from across the United States. The topics discussed relate to the work we do as family leaders and professionals who share the same interest in the special health care needs sector, which builds our knowledge base and provides the correct care for the families we work with. The Southwest Family Partner has also studied the Action Learning Sets and she has taught herself to be a better listener. She attended the Block Grant Review in Kansas City, on August 7, 2018. Being the Family Delegate for Missouri has given her the opportunity to build her leadership skills and confidence she needs to be a better family leader. She has participated in leadership training and other skill building exercises through AMCHP and is grateful for those opportunities to continue on her path to be the best family leader she can be.

LPHA

The MCH Services Program contracted with 113 LPHAs, and the LPHAs’ efforts to fulfill the purpose of the MCH Services contract included activities and services that addressed the needs of children and youth with special health care needs. A total of 33 LPHAs reported providing direct services for children with special health care needs, 41 LPHAs reported providing infant developmental screening and referral for suspected/identified delay or disability, 37 LPHAs reported partnering with families to improve health and health care across the life span, and 59 LPHAs reported providing individual education on the medical home model to community members.

School Health

Access to health insurance is integral to students having a medical home. The School Health Program (SHP) actively encouraged school nurses to assess student health insurance status by educating the nurses on the importance of a medical home and providing resources and tools to assist them to aid students/families to enroll in Medicaid/MO HealthNet. The SHP worked to increase school district reporting on chronic health conditions and student health insurance status through the Special Health Care Needs Survey through the School Health Online Reporting System (SHORS). SHP works with Information Technology (IT) staff to assure the SHORS database has the capacity to support the school nurse reporting of their district data on student health issues and health insurance status.

SHP continues to support school policy change, with a growing increase in the number of school districts asking if students have health insurance (now 55%; from 245 to 284 of 518 public schools) seen as an indicator of student access to quality health care. SHP also helped enhance school health staff efforts in care coordination and support in managing chronic health conditions.

SHP encourages school nurses to assist students with health insurance to utilize benefits to support the medical home through care coordination. SHP partnered with programs in DHSS, MO HealthNet, and others to establish an online resource for school nurses— www.SchoolNurselink.com. This site provides information to school nurses to get information about not only the covered benefits for each MO HealthNet Managed Care plan, but also provides contact information for care coordination and services that can be shared with families to assist them in accessing services through their Managed Care plan. This link has been active since the fall of 2017, and was publicized through the following methods: 

• SHP partnered for a training on this at the School Nurse Connection meeting October 10, 2017; with 90 school nurses, public health, and health care partners in attendance.
• The link and website information was promoted and shared through the SHP’s News You Can Use messaging, which is the email list of school nurses available to the 518 public school districts as well as a growing list of private, parochial, and charter schools signing up across Missouri.
• Annual Health Office Orientation (July 2018) featured a session on resources to highlight this online resource and demonstrate the tools for the 91 new school nurses and health office staff attending.
• Annual Lead School Nurse Collaborative (September 2018) included a presentation and review of the website with the 90 school nurse leaders attending the program. The session included a demonstration of the resource, emphasizing the value of the materials for school nurses as a direct link to students and families. In their roles, they assess health care needs and can identify health resources and assist families to access the services and benefits covered in their health care plans.

Positive feedback was reported regarding this online resource. SHP received a call from a school nurse expressing concern about one of her students.  This elementary student with asthma had no emergency medications at school, and the health history did not indicate that the chronic condition was being managed by a healthcare provider (an older sibling had already died from asthma-related issues). As the school nurse attempted to work with the family, she identified a number of concerns for this family, including social, health, and others. Because the student’s health information form identified the Managed Care plan, this nurse was able to use the SchoolNurseLink and determine resources for this family. The nurse also connected the mother with a case manager and establish the child into care coordination with a medical home. The nurse reported that this student had an appointment scheduled to be seen in the clinic and was on the way to better asthma management in the medical home. The insurance plan case manager was using plan incentives to encourage the family to keep appointments.

Health promotion and illness prevention are part of the school nurse’s role in the medical home. In the many trainings and professional development opportunities the SHP provides, the Immunizations Program was invited to train school nurses on reviewing immunization records, completing the annual Summary Report of Immunization Status of Missouri Public, Private, Parochial and Parish School Children for DHSS, and where to find immunization service and local resources. Over the 2017-18 school year, in partnership with SHP, the Immunizations Program staff presented at the Health Office Orientation, the annual Missouri Charter Public School conference, and were invited to speak at several individual school district in-service days providing professional development for the school nurses. Program evaluations indicated school nurses were provided with the most current evidence and best practices to promote compliance with vaccine requirements as well as educate parents about vaccine safety and immunization schedules. 

SHP is using the AAP and Center for Disease Control and Prevention’s Enhancing School Health Services through Training, Education, Assistance, Mentorship, and Support (TEAMS) project framework as a tool for systematic review, evaluation, and improvement of school health services in a growing cadre of school districts. Through implementing the TEAMS modules, the participating school districts identified a range of improvement opportunities in school health services policies and practices. Across the cohorts, 100% of the 18 school districts identified goals to improve their systems to support coordinated, comprehensive, and ongoing care for all students. In the last cohort of schools added, the districts identified priorities to improve their school’s health services in the area of care coordination and began developing action plans to address care coordination, both as access to health care through insurance as well as chronic disease management (i.e. asthma) and utilizing appropriate resources through care coordination. This included assessing health insurance status, assisting with MO HealthNet/Medicaid applications, and care planning with primary care providers. This project is ongoing, and new school districts are added each year to work with on implementing the TEAMS modules and assessment tools. The issues they select to address are individualized, so there is variation in priorities each school chooses to address.

Within their practice, school nurses educate and assist families to access health care services. They review student health information and collaborate with primary care providers and others to develop care plans for managing chronic health conditions. They also establish policies and procedures to assure a system for addressing student care needs is in place for school health services. SHP sponsored a series of professional development webinars in the 2017-18 school year, with presenters providing practice updates for school nurses. The content experts spoke on various student health topics, including Autism, oral health, dermatology, headaches, asthma, seizure disorders as well as mental health issues of trauma, self-harm, and eating disorders. This series was targeted to assist school nurses in partnering with students, families, and care practitioners to support the coordination of care and services and enhance student success. Many evaluation comments included the nurses expressing their understanding for the need for consistency across all areas where the students live, learn, and play as well as becoming better educated about the health conditions so they can play a stronger role on the team to work with students, parents, and care practitioners.

SHP is a planning partner and member of the ShowMe School Based Health Alliance, an emerging affiliate of the National School Base Health Alliance. SHP is working through this alliance to monitor new school-based/school-linked initiatives and participate on advisory committees to expand the existing and planned telemedicine, mobile, and/or fixed health care services on school campuses. There are currently 25 existing school-based health centers and 10 are in the planning stage across Missouri.

In partnership with the Missouri School Boards Association, SHP was a member of the task force to create an Emergency Planning Guide for Students with Special and Functional Needs within the Context of School and Community Planning (July 2018). This is a tool for schools to 1) create a list of questions that should be addressed each time individuals or a committee creates, reviews, and/or trains on emergency procedures; and 2) compile an electronic file of resources to inform the questions and support districts in improving their emergency planning process considering the unique needs of each person within the school community. As the guidance is finalized, it will be available for distribution in 2019.

Newborn Screening

DHSS initially revised the Newborn Screening educational booklet in May 2017 to include information on severe combined immunodeficiency, which was added to the newborn screening panel in January 2017. Revisions also included the addition of information regarding the importance of a medical home for all children with and without special health care needs. This information continues to be included in the Newborn Screening educational booklet which is distributed to new and expectant parents in Missouri.

The Newborn Hearing Screening Program (NHSP) sent letters to the primary care physicians of all newborns who missed or failed to pass the newborn hearing screening. The letters emphasize the importance of timely screening, rescreening, or audiologic evaluation in order for a child who is deaf or hard-of-hearing to achieve speech and language skills equivalent to peers with typical hearing. The letter provides a link to the “Missouri Audiological Services for Missouri Newborns” publication on the DHSS website. Approximately 4,000 Missouri newborns miss or fail to pass the newborn hearing screening each year.  

The NHSP provided funding to the SHCN Family Partnership to hire a Family Partner (FP) to focus on support of families involved in the early hearing detection and intervention process. SHCN FPs provide families with children with special health care needs the opportunity to offer each other support and information on a statewide basis. In addition to sharing information about resources related to hearing loss in infants and children, the new FP educates families about the benefits of a medical home approach. In June 2018, the NHSP and SHCN made plans to hire an additional FP to work with families with children who are deaf or hard-of-hearing (FP-DHH). The new FP-DHH will work with families whose newborn recently failed to pass the initial newborn hearing screening. The FP-DHH will provide education on the importance of follow-up with rescreening or diagnostic evaluation while offering parent-to-parent support. 

Early Childhood Professionals

Inclusion Services are provided to assist families of children with special needs in locating and or maintaining appropriate child care services. Additionally, they offer onsite coaching and consultation and provide referrals to available resources. This is done in a variety of ways including on-site, child-specific technical assistance to support successful inclusion, remote technical assistance, and training child care staff so they are able to provide appropriate inclusive care. Inclusion services provide evidence-based practices to support the development and education of children with special needs and provide parents with resources necessary to maintain employment. Child care providers are enabled to provide appropriate and effective early care and education which has shown to improve the early care experiences of children with and without disabilities and will improve the future of children at risk for school failure and delinquency. This is currently the only comprehensive statewide effort to support families and their children with actual or perceived special needs in Missouri.

Dental Home

The Office of Dental Health (ODH) collaborated with the Elk’s Mobile Dental Program to provide specialized dental services to individuals with Intellectual and Developmental Disabilities (I/DD) even though funds for the program were not approved by the legislature for this budget year. From August 2018 to September 2018, nearly 60 individuals were seen by the Elk’s Mobile Dental Program. The ODH received notice that funding for the Elk’s Mobile Dental Program was approved for FY19.

All Schools for the Severely Disabled were visited by ODH’s Oral Health Consultants during the 2017-2018 school year through the Preventive Services Program. A total of 373 students had an oral health screening and/or varnish applied. Education was also provided to the children’s caregivers on the importance of oral health care and tips on how to help the children and/or caregivers take care of the student’s teeth.