III.E.2.c. State Action Plan - CSHCN - Annual Report - Missouri - 2021
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NPM #11 Medical Home – Ensure coordinated, comprehensive and ongoing health care services for children with and without special health care needs.
According to the 2017-2018 NSCH survey, an estimated 50.6% of Missouri CSHCN had a medical home in comparison to 42.7% nationwide. In addition, the percentage of CSHCN with a medical home varied by different socioeconomic characteristics. Non-Hispanic White CSHCN in Missouri (48.3%) had a medical home slightly more frequently than their counterparts nationally (47.9%). Nationally, children 0-5 year olds (40.8%) had lower percentages of having a medical home when compared to 12-17 year olds (44.7%). In Missouri, children 0-5 years old (61.8%) had higher percentages of having a medical home compared to 12-17 year olds (40.6%). Missouri CSHCN Medicaid recipients were less likely to have a medical home (46.0%) than their privately insured counterparts (59.5%). However, the percentage for Missouri CSHCN Medicaid recipients that had a medical home was higher than for their national counterparts (35.9%). College graduate households in Missouri (58.5%) had a lower proportion than those with some college (60.0%) having a medical home, but a higher proportion than high school graduate households (37.6%). This differs from the national trend where college graduate households (49.7%) have a higher proportion than those with some college (41.7%) and high school graduates (34.5%). Single parent households (50.5%) had a lower proportion of CSHCN with a medical home than two-parent married households in Missouri (54.9%).
Among children without special health care needs (non-CSHCN) nationally, 49.4% received care through a medical home, compared with 51.0% in Missouri from 2017-2018 NSCH. This rate is below the HP2020 target of 63.3%. As was the case with Missouri CSHCN, the proportions of Missouri non-CSHCN also varied by sociodemographic characteristics. Non-Hispanic Whites (56.8%) had the highest proportion receiving care within a medical home, compared to Hispanics (37.7%)* and non-Hispanic Blacks (23.5%)*. Non-Hispanic blacks also had a lower percentage in Missouri than they did nationally (37.4%). Missouri children from single parent households (34.5%) less frequently had a medical home than their counterparts from married households (58.2%). In Missouri, 53.7% of children ages 0-5 years old had a medical home. This percentage is higher than for children 6-11 years old (49.2%) and 12-17 years old (49.6%). This is also greater than the proportion for children aged 0-5 years old nationally (50.9%). Furthermore, privately insured children (61.5%) were more likely to receive care in a medical home than uninsured (30.5%) and Medicaid insured children (33.0%). College graduate households in Missouri (63.9%) had a higher proportion of non-CSHCN with a medical home than some college (47.1%) and high school graduate households (35.5%)*. This was also higher than the national proportion for college graduate households who have a medical home (59.7%).
Medical Home is 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 American Academy of Pediatrics (AAP) 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 family partnership in decision-making and satisfaction 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 CSHCN 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 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. 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 and Title V MCH Block Grant funding.
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 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.
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 2019, 99% 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 2019, 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 2019, 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 91% 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 SFY19 included:
- CYSHCN Program served 829 children and youth with special health care needs.
- HCY Program served 1,612 children and youth with special health care needs.
- Family Partnership served 8,170 individuals.
SHCN contracts with MO KAT for improved access and independence of children and youth with special health care needs. In Federal Fiscal Year 2019, the assistive technology services and devices provided through KAT were coordinated with a total of 81 entities (families, medical professionals, Service Coordinators, and schools) for 30 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 28 different sources, totaling $120,524 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 continued to raise awareness about the importance of a medical home for all children. The medical home brochure was shared with families and professionals at back to school fairs, conferences and other community events. Additionally, families who attended the Family Partnership Parent and Caregiver Retreat on September 6-7, 2019 were provided with a tote 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 Family Partners also facilitated a breakout session at the Retreat to assist families in developing a care plan.
The 18th annual SHCN Family Partnership Parent and Caregiver Retreat was held September 6-7, 2019 at The Lodge of Four Seasons in Lake Ozark, Missouri. The total attendance at the Retreat was 231 individuals; 193 self-advocates, parents and caregivers of children and youth with special health care needs, and 38 professionals.
The Family Partners plan and facilitate all Retreat activities to ensure the event is led by families for families. The Retreat provides an opportunity for families to network with one another, discover resources to assist their family, enrich their leadership and partnering skills, and plan a vision for their family’s future. The theme of the Retreat was “When Life Gives You Lemons, Make Lemonade.” In our day-to-day lives, everyone encounters difficult situations, the lemons, and how do we turn them into something positive, like lemonade? The Friday evening activities began with Dr. Greg Pursley sharing his personal unexpected experience when his son was born with complex medical needs and the strategies he used to reach a positive result. Dr. Pursley also encouraged families to share their own experiences. 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. Attendee evaluations from past Retreats identified a need for families to have a quiet space to step away from the larger meeting or to enjoy a meal with family members not registered to attend Retreat events. The Family Partners were able to work with the hotel to secure an additional room located near the Retreat events to allow families to utilize the space. Families expressed gratitude for having the space, and it will become part of future Retreats. The following are descriptions of the breakout sessions offered to attendees:
- Reviewing the basic principles and regulations around Individualized Education Programs (IEPs) and 504 plans to include the evaluation process, structure of each plan, team building, goal development, and conflict resolution strategies;
- Preparing for a financial future for individuals with special needs by addressing critical issues such as protecting government benefit eligibility for Supplemental Security Income (SSI), creating special needs trusts, and the importance of a will;
- Using sequencing as a tool to plan the steps and recognize and overcome the barriers to work toward a new definition of success;
- Providing an overview of First Steps, Missouri’s Early Intervention program to cover the referral process, eligibility criteria and, for children who are eligible, the development and implementation of the IEP;
- Using technology to empower parents with quick access to information, the ability to review and reflect, and demonstrations to meet the specific needs of their child and the strategies they are learning as parents to meet their child’s needs;
- Exploring inclusive ways to include children ages birth to 21;
- Developing a means of communication that works within a family to improve a child’s social interactions and academic development;
- Providing an informal networking session for fathers to discuss how to overcome the daily struggles of caregiving in a judgement-free zone; and
- Providing answers to the MCH Statewide Needs Assessment to improve health services for children and youth with special health care needs and families throughout the state.
Families who participated in the Retreat completed an evaluation form. The following are a few of the quotes shared by families about their experience:
- Many folks reached out to me to provide me with information about my situation, for that I am truly grateful.
- There are a lot of people out there who share our struggles & can identify with our situation.
- Things aren't horrible, our situation while not desirable, isn't the end of the world.
- Living vs. Being alive, important to find mentors with similar life experiences to help anticipate your future, apps for sequencing-can plan & can work.
- It's given me the chance to recharge, be around people who are going through the same thing and not be judged.
- More aware of help available. More aware of what others are gaining through raising special needs children.
- The feeling of knowing we are not alone.
- Really well done. I appreciate meeting so many different people and hearing about so many different opportunities.
- For the first time in the 4 years of my child’s life, I met someone whose child has a very similar rare disability. Thank you.
- Had a wonderful time. Got to relax and learn about all the possibilities of life changing choices to make life easier with having a disabled child.
- This is such a great experience for my husband and I. It helps to have financial help while doing this retreat, otherwise we would not be able to attend. We get to connect with other parents and learn new resources.
- The scheduling of this retreat is great. So many times retreats are exhausting, running from class to class, you give plenty of time in between events so people can have rest periods & feel refreshed. Also, the freedom to participate (or not participate) in the various sessions is good. Sometimes these parents first need a break in a beautiful place. Thanks!! And it's great that all the leaders in this are parents of special needs children & know where all the 'participants' are coming from. So often leaders haven't been there and don't have a clue what the participants are going through. Great retreat! Keep up the good work!
- The retreat is an excellent opportunity to network and become more socially involved.
- I enjoy many many things about this event. By far having time alone with my spouse is so wonderful. We are able to plan, set goals and debrief about our life. It is also so great to understand I am not alone in my challenges. The topics, speakers, exhibitors are also great.
- Was a lot of fun. Was thrilled to get to meet new people and make some new contacts.
In addition to the Family Partnership Parent & Caregiver Retreat, the Family Partners interact with parents, caregivers, and professionals throughout the year. For example, Family Partnership collaborated with the Disabled Athlete Sports Association (DASA) to sponsor their annual Camp WeCanDu. Camp WeCanDu provides an opportunity for local youth with physical disabilities to fully participate in a week-long, traditional summer camp experience. Children living with cerebral palsy, spinal cord injuries, visual impairments, and many other forms of physical disabilities come together to create a fun and engaging social support system that encourages campers to discover their natural abilities through athletic and sensory activities while instilling family values and promoting independence and self-confidence that will later resonate through all aspects of life.
The Family Partners continue to expand their regional Listservs to share community events and resources in their areas with families of children and youth with special health care needs.
The Family Partners summarized a few of their successes from the past year. Their comments are listed below.
Southwest Family Partner:
- I am a member of the Council for Adolescent and School Health (CASH). Attending these meetings provides me with the opportunity to offer the family perspective as well as to network with other professionals around the state, ranging from social workers to school counselors.
- I was able to make a connection with DASA and hosted a resource table at the Super Sports Sunday. I networked with families in attendance and learned more about children with special health care needs discovering their physical abilities using adaptive equipment.
Southeast Family Partner:
- I presented to ParentLink Navigators about Family Partnership along with SHCN staff to discuss services provided to families of children and youth with special health care needs.
- I assisted a family with an infant who has complex medical needs transition from Florida to Missouri services.
- I presented on Family Partnership to Missouri Head Start directors and discussed the medical home project.
Northeast Family Partner:
- I have been attending monthly meetings with the Alliance for Healthy Communities (AHC). AHC is a grant-funded, grass roots coalition that identifies and changes community conditions that enable alcohol and drug abuse, as well as mental health and suicide risks among area youth. AHC serves the communities within the footprint of the Parkway C-2 School District by providing a platform for building partnerships and collaboration between individuals and organizations from across our region. I bring information to the coalition to spread the word about resources that DHSS and Family Partnership can bring to the members of the coalition. This included the coalition ordering 100 Connect with Me card packs to distribute at different functions. Having a representative from DHSS at the collaboration fills the need to know what is available to help prevent crisis in the community.
- I participate in the Healthy Homes/Indoor Air Quality program through the University of Missouri Extension. This is a national program to educate consumers about sources, health risks, and control measures related to common residential pollutants and toxins. The program aims to help consumers reduce their health risks.
- 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 health care, and translating new findings to improve the quality of care within an eight-state region. By participating in the Network, I am able to share information about Missouri resources as well as learn about activities for families in other states.
- 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.
Northwest Family Partner:
- As part of my role as the Northwest Family Partner, I am also the Vice-Chair and Charter member of the Missouri Parent Advisory Council (PAC). Through my involvement with PAC, I am also a member of the Missouri Child Abuse and Neglect Sub-Committee. I attend and at times construct conference calls pertaining to PAC’s involvement with various organizations throughout the state of Missouri. In addition, I am able to participate in Missouri’s Annual Child Advocacy Day.
The Southwest Family Partner served as the Association for Maternal & Child Health Programs (AMCHP) Family Delegate. In December 2018, she was selected to participate in the AMCHP Leadership Lab Family Leader’s Cohort for 2019. Participation in the cohort broadened expertise in areas such as strategic planning, public policy, family centered care, and evidence-based decision-making. She also attended the AMCHP Conference in San Antonio, TX, March 7-12, 2019. She connected with family delegates from other states and was able to share updates about the Family Partnership. She was able to collaborate with professionals from Iowa and North Carolina about projects relating to family engagement to implement for Missouri families. She continued to build networks with other states for resource information and help as needed. In addition, as the Family Delegate for the state of Missouri, she attended the Block Grant Review in Jefferson City, on August 5, 2019. This role gave her the opportunity to build her leadership skills and confidence needed 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.
In September 2019, the Southeast Family Partner was selected to participate in the AMCHP Family Engagement Community of Practice (CoP). The AMCHP Family Engagement CoP is a network of individuals with common problems or interests who explore ways of working, identify common solutions and share good practices and ideas. The Family Partner’s role is to provide input on the monthly topics of discussions with the national CoP group from a professional and family perspective and facilitate a monthly topic as needed. Also in September, the Northeast Family Partner participated in the Maternal Child Environmental Health (MCEH) Collaborative Improvement & Innovation Network (CoIIN) Learning Session 3 held in Washington, DC. During the first day of the meeting, she participated on the Family Partner Panel and shared her experience as a member of the Missouri CoIIN Team. Her involvement enabled her to build partnerships with local Code Enforcement agencies and share resources for the prevention of lead poisoning. Furthermore, she connected with several families that had been identified as having a child with an elevated blood lead level and shared their stories during the Family Partner Panel discussion.
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 35 LPHAs reported providing direct services for children with special health care needs, 42 LPHAs reported providing infant developmental screening and referral for suspected/identified delay or disability, 40 LPHAs reported partnering with families to improve health and health care across the life span, and 61 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 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 continued to support school policy change to monitor student health insurance status as an indicator of access to quality health care. SHP tracked insurance status as a question in the SHORS database; 2018-19 experienced a decrease in the voluntary reporting by school districts, but in review of those that have continued to submit data, there continues to be an upward trend in the number of districts that inquire about student insurance status. Of the 518 public school districts in Missouri, 74% of them reported asking if students have health insurance (384 of 518 public schools). SHP also promotes school health staff efforts in care coordination and support in managing chronic health conditions. SHP continues to promote the School Nurse Link (www.schoolnurselink.com) as a resource available to all school nurses as they work to support families to access services, utilize their healthcare and insurance benefits, and find health insurance resources.
SHP identified content experts and scheduled a series of interactive web-based learning events to continue the Nurse Education Webinar Series (NEWS) and provide professional development for school nurses. The 2018-19 series focused on standards of practice in school nursing, with targeted training in Care Coordination and Health Care Action Plans. An average of 68 participated in the live webinars, and 732 registered for the series with the option to attend the live program and/or access the file of archived programs. SHP submitted the NEWS project to the AMCHP Innovation Station, and the project was accepted as a Cutting-Edge Practice to be included in the searchable database of MCH programs across the U.S. SHP also has the opportunity to work with AMCHP staff to further move the practice up the continuum.
SHP continues to support the AAP and CDC Training, Education, Advocacy, Mentoring and Support (TEAMS) framework as a tool for systematic review, evaluation and improving school health services in a growing cadre of school districts. The identified critical issues and emerging action plans among the participating school districts demonstrate that they recognize the role school nurses have in the medical home, especially students with chronic health conditions and healthcare needs. Overall, the focus of the improvement plans being developed by these school districts is to improve school health services participation in care coordination to support the student for academic success. For the 2018-19 school year, three additional districts were added, bringing the number of school districts the SHP is supporting with resources and technical assistance to implement the TEAMS framework to 20, with student enrollment ranging from 955 to 23,854.
SHP is a founding partner and member of the advisory board of Show-Me School-Based Health Alliance of Missouri, now an affiliate of the National School-Based Health Alliance organization. Within this partnership, SHP tracks the number of school-based health clinics and services. Presently, 50 of the 114 Missouri counties and 1 independent city have at least one school-based health program site (https://moschoolhealth.org/resources). The sites, the health services offered, and the funding structures of each of these school-based clinics vary by the needs and local resources of the individual communities.
Newborn Screening
The Newborn Screening educational booklet includes information regarding the importance of a medical home for all children with and without special health care needs. This booklet is distributed to new and expectant parents in Missouri. In 2018, parent surveys were updated to include a question asking parents if their child has a medical home based on a definition provided. These surveys are distributed to parents of newborns who have had a high risk newborn blood spot screen that resulted in confirmation of a disorder as well as a random selection of newborns with normal blood spot screens. For parents of children with a normal newborn screening result, 5 out of 6 surveyed felt that their child had a medical home. Of those with a confirmed positive, survey results revealed 100% (17/17) felt that their child had a medical home. These were from parents of children who had a high risk newborn screening result and were diagnosed with a confirmed disorder by additional testing with a specialist.
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. In FFY 2019, there were 3,022 Missouri newborns that missed or failed to pass the newborn hearing screening.
The NHSP provided funding to the SHCN Family Partnership to employ two Family Partners who are parents of children who are deaf or hard-of-hearing (FP-DHH) to support Missouri families involved in the early hearing detection and intervention (EHDI) process. The FP-DHHs offer parent-to-parent support, assist and encourage families through the follow-up screening and diagnostic process, share information about resources related to hearing loss in infants and children, and educate families about the benefits of a medical home approach. Each FP-DHH has access to professional interpreters and NHSP brochures in Arabic, English, Mandarin, Spanish, and Vietnamese.
The NHSP modified its website to include a section for primary care physicians (PCP). The new web pages emphasize the PCP’s role as the medical home for a child who is DHH. The site explains how the PCP guides the family through the EHDI process by referring a newborn who did not pass the newborn hearing screening to an audiologist for diagnostic evaluation before three months of age and ensuring the diagnostic evaluation took place. The PCP web pages also describe appropriate referrals to other medical specialists for problems related to hearing loss such as an otolaryngologist, ophthalmologist, cardiologist, and a geneticist.
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). From October 2018 to September 2019, 635 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 FY20.
All Schools for the Severely Disabled were visited by ODH’s Oral Health Consultants during the 2018-2019 school year through the Preventive Services Program. A total of 370 students had an oral health screening and 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.
* Interpret with caution due to sample size limitations.
NPM #11 Medical Home – Ensure coordinated, comprehensive and ongoing health care services for children with and without special health care needs.
According to the 2017-2018 NSCH survey, an estimated 50.6% of Missouri CSHCN had a medical home in comparison to 42.7% nationwide. In addition, the percentage of CSHCN with a medical home varied by different socioeconomic characteristics. Non-Hispanic White CSHCN in Missouri (48.3%) had a medical home slightly more frequently than their counterparts nationally (47.9%). Nationally, children 0-5 year olds (40.8%) had lower percentages of having a medical home when compared to 12-17 year olds (44.7%). In Missouri, children 0-5 years old (61.8%) had higher percentages of having a medical home compared to 12-17 year olds (40.6%). Missouri CSHCN Medicaid recipients were less likely to have a medical home (46.0%) than their privately insured counterparts (59.5%). However, the percentage for Missouri CSHCN Medicaid recipients that had a medical home was higher than for their national counterparts (35.9%). College graduate households in Missouri (58.5%) had a lower proportion than those with some college (60.0%) having a medical home, but a higher proportion than high school graduate households (37.6%). This differs from the national trend where college graduate households (49.7%) have a higher proportion than those with some college (41.7%) and high school graduates (34.5%). Single parent households (50.5%) had a lower proportion of CSHCN with a medical home than two-parent married households in Missouri (54.9%).
Among children without special health care needs (non-CSHCN) nationally, 49.4% received care through a medical home, compared with 51.0% in Missouri from 2017-2018 NSCH. This rate is below the HP2020 target of 63.3%. As was the case with Missouri CSHCN, the proportions of Missouri non-CSHCN also varied by sociodemographic characteristics. Non-Hispanic Whites (56.8%) had the highest proportion receiving care within a medical home, compared to Hispanics (37.7%)* and non-Hispanic Blacks (23.5%)*. Non-Hispanic blacks also had a lower percentage in Missouri than they did nationally (37.4%). Missouri children from single parent households (34.5%) less frequently had a medical home than their counterparts from married households (58.2%). In Missouri, 53.7% of children ages 0-5 years old had a medical home. This percentage is higher than for children 6-11 years old (49.2%) and 12-17 years old (49.6%). This is also greater than the proportion for children aged 0-5 years old nationally (50.9%). Furthermore, privately insured children (61.5%) were more likely to receive care in a medical home than uninsured (30.5%) and Medicaid insured children (33.0%). College graduate households in Missouri (63.9%) had a higher proportion of non-CSHCN with a medical home than some college (47.1%) and high school graduate households (35.5%)*. This was also higher than the national proportion for college graduate households who have a medical home (59.7%).
Medical Home is 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 American Academy of Pediatrics (AAP) 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 family partnership in decision-making and satisfaction 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 CSHCN 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 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. 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 and Title V MCH Block Grant funding.
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 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.
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 2019, 99% 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 2019, 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 2019, 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 91% 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 SFY19 included:
- CYSHCN Program served 829 children and youth with special health care needs.
- HCY Program served 1,612 children and youth with special health care needs.
- Family Partnership served 8,170 individuals.
SHCN contracts with MO KAT for improved access and independence of children and youth with special health care needs. In Federal Fiscal Year 2019, the assistive technology services and devices provided through KAT were coordinated with a total of 81 entities (families, medical professionals, Service Coordinators, and schools) for 30 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 28 different sources, totaling $120,524 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 continued to raise awareness about the importance of a medical home for all children. The medical home brochure was shared with families and professionals at back to school fairs, conferences and other community events. Additionally, families who attended the Family Partnership Parent and Caregiver Retreat on September 6-7, 2019 were provided with a tote 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 Family Partners also facilitated a breakout session at the Retreat to assist families in developing a care plan.
The 18th annual SHCN Family Partnership Parent and Caregiver Retreat was held September 6-7, 2019 at The Lodge of Four Seasons in Lake Ozark, Missouri. The total attendance at the Retreat was 231 individuals; 193 self-advocates, parents and caregivers of children and youth with special health care needs, and 38 professionals.
The Family Partners plan and facilitate all Retreat activities to ensure the event is led by families for families. The Retreat provides an opportunity for families to network with one another, discover resources to assist their family, enrich their leadership and partnering skills, and plan a vision for their family’s future. The theme of the Retreat was “When Life Gives You Lemons, Make Lemonade.” In our day-to-day lives, everyone encounters difficult situations, the lemons, and how do we turn them into something positive, like lemonade? The Friday evening activities began with Dr. Greg Pursley sharing his personal unexpected experience when his son was born with complex medical needs and the strategies he used to reach a positive result. Dr. Pursley also encouraged families to share their own experiences. 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. Attendee evaluations from past Retreats identified a need for families to have a quiet space to step away from the larger meeting or to enjoy a meal with family members not registered to attend Retreat events. The Family Partners were able to work with the hotel to secure an additional room located near the Retreat events to allow families to utilize the space. Families expressed gratitude for having the space, and it will become part of future Retreats. The following are descriptions of the breakout sessions offered to attendees:
- Reviewing the basic principles and regulations around Individualized Education Programs (IEPs) and 504 plans to include the evaluation process, structure of each plan, team building, goal development, and conflict resolution strategies;
- Preparing for a financial future for individuals with special needs by addressing critical issues such as protecting government benefit eligibility for Supplemental Security Income (SSI), creating special needs trusts, and the importance of a will;
- Using sequencing as a tool to plan the steps and recognize and overcome the barriers to work toward a new definition of success;
- Providing an overview of First Steps, Missouri’s Early Intervention program to cover the referral process, eligibility criteria and, for children who are eligible, the development and implementation of the IEP;
- Using technology to empower parents with quick access to information, the ability to review and reflect, and demonstrations to meet the specific needs of their child and the strategies they are learning as parents to meet their child’s needs;
- Exploring inclusive ways to include children ages birth to 21;
- Developing a means of communication that works within a family to improve a child’s social interactions and academic development;
- Providing an informal networking session for fathers to discuss how to overcome the daily struggles of caregiving in a judgement-free zone; and
- Providing answers to the MCH Statewide Needs Assessment to improve health services for children and youth with special health care needs and families throughout the state.
Families who participated in the Retreat completed an evaluation form. The following are a few of the quotes shared by families about their experience:
- Many folks reached out to me to provide me with information about my situation, for that I am truly grateful.
- There are a lot of people out there who share our struggles & can identify with our situation.
- Things aren't horrible, our situation while not desirable, isn't the end of the world.
- Living vs. Being alive, important to find mentors with similar life experiences to help anticipate your future, apps for sequencing-can plan & can work.
- It's given me the chance to recharge, be around people who are going through the same thing and not be judged.
- More aware of help available. More aware of what others are gaining through raising special needs children.
- The feeling of knowing we are not alone.
- Really well done. I appreciate meeting so many different people and hearing about so many different opportunities.
- For the first time in the 4 years of my child’s life, I met someone whose child has a very similar rare disability. Thank you.
- Had a wonderful time. Got to relax and learn about all the possibilities of life changing choices to make life easier with having a disabled child.
- This is such a great experience for my husband and I. It helps to have financial help while doing this retreat, otherwise we would not be able to attend. We get to connect with other parents and learn new resources.
- The scheduling of this retreat is great. So many times retreats are exhausting, running from class to class, you give plenty of time in between events so people can have rest periods & feel refreshed. Also, the freedom to participate (or not participate) in the various sessions is good. Sometimes these parents first need a break in a beautiful place. Thanks!! And it's great that all the leaders in this are parents of special needs children & know where all the 'participants' are coming from. So often leaders haven't been there and don't have a clue what the participants are going through. Great retreat! Keep up the good work!
- The retreat is an excellent opportunity to network and become more socially involved.
- I enjoy many many things about this event. By far having time alone with my spouse is so wonderful. We are able to plan, set goals and debrief about our life. It is also so great to understand I am not alone in my challenges. The topics, speakers, exhibitors are also great.
- Was a lot of fun. Was thrilled to get to meet new people and make some new contacts.
In addition to the Family Partnership Parent & Caregiver Retreat, the Family Partners interact with parents, caregivers, and professionals throughout the year. For example, Family Partnership collaborated with the Disabled Athlete Sports Association (DASA) to sponsor their annual Camp WeCanDu. Camp WeCanDu provides an opportunity for local youth with physical disabilities to fully participate in a week-long, traditional summer camp experience. Children living with cerebral palsy, spinal cord injuries, visual impairments, and many other forms of physical disabilities come together to create a fun and engaging social support system that encourages campers to discover their natural abilities through athletic and sensory activities while instilling family values and promoting independence and self-confidence that will later resonate through all aspects of life.
The Family Partners continue to expand their regional Listservs to share community events and resources in their areas with families of children and youth with special health care needs.
The Family Partners summarized a few of their successes from the past year. Their comments are listed below.
Southwest Family Partner:
- I am a member of the Council for Adolescent and School Health (CASH). Attending these meetings provides me with the opportunity to offer the family perspective as well as to network with other professionals around the state, ranging from social workers to school counselors.
- I was able to make a connection with DASA and hosted a resource table at the Super Sports Sunday. I networked with families in attendance and learned more about children with special health care needs discovering their physical abilities using adaptive equipment.
Southeast Family Partner:
- I presented to ParentLink Navigators about Family Partnership along with SHCN staff to discuss services provided to families of children and youth with special health care needs.
- I assisted a family with an infant who has complex medical needs transition from Florida to Missouri services.
- I presented on Family Partnership to Missouri Head Start directors and discussed the medical home project.
Northeast Family Partner:
- I have been attending monthly meetings with the Alliance for Healthy Communities (AHC). AHC is a grant-funded, grass roots coalition that identifies and changes community conditions that enable alcohol and drug abuse, as well as mental health and suicide risks among area youth. AHC serves the communities within the footprint of the Parkway C-2 School District by providing a platform for building partnerships and collaboration between individuals and organizations from across our region. I bring information to the coalition to spread the word about resources that DHSS and Family Partnership can bring to the members of the coalition. This included the coalition ordering 100 Connect with Me card packs to distribute at different functions. Having a representative from DHSS at the collaboration fills the need to know what is available to help prevent crisis in the community.
- I participate in the Healthy Homes/Indoor Air Quality program through the University of Missouri Extension. This is a national program to educate consumers about sources, health risks, and control measures related to common residential pollutants and toxins. The program aims to help consumers reduce their health risks.
- 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 health care, and translating new findings to improve the quality of care within an eight-state region. By participating in the Network, I am able to share information about Missouri resources as well as learn about activities for families in other states.
- 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.
Northwest Family Partner:
- As part of my role as the Northwest Family Partner, I am also the Vice-Chair and Charter member of the Missouri Parent Advisory Council (PAC). Through my involvement with PAC, I am also a member of the Missouri Child Abuse and Neglect Sub-Committee. I attend and at times construct conference calls pertaining to PAC’s involvement with various organizations throughout the state of Missouri. In addition, I am able to participate in Missouri’s Annual Child Advocacy Day.
The Southwest Family Partner served as the Association for Maternal & Child Health Programs (AMCHP) Family Delegate. In December 2018, she was selected to participate in the AMCHP Leadership Lab Family Leader’s Cohort for 2019. Participation in the cohort broadened expertise in areas such as strategic planning, public policy, family centered care, and evidence-based decision-making. She also attended the AMCHP Conference in San Antonio, TX, March 7-12, 2019. She connected with family delegates from other states and was able to share updates about the Family Partnership. She was able to collaborate with professionals from Iowa and North Carolina about projects relating to family engagement to implement for Missouri families. She continued to build networks with other states for resource information and help as needed. In addition, as the Family Delegate for the state of Missouri, she attended the Block Grant Review in Jefferson City, on August 5, 2019. This role gave her the opportunity to build her leadership skills and confidence needed 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.
In September 2019, the Southeast Family Partner was selected to participate in the AMCHP Family Engagement Community of Practice (CoP). The AMCHP Family Engagement CoP is a network of individuals with common problems or interests who explore ways of working, identify common solutions and share good practices and ideas. The Family Partner’s role is to provide input on the monthly topics of discussions with the national CoP group from a professional and family perspective and facilitate a monthly topic as needed. Also in September, the Northeast Family Partner participated in the Maternal Child Environmental Health (MCEH) Collaborative Improvement & Innovation Network (CoIIN) Learning Session 3 held in Washington, DC. During the first day of the meeting, she participated on the Family Partner Panel and shared her experience as a member of the Missouri CoIIN Team. Her involvement enabled her to build partnerships with local Code Enforcement agencies and share resources for the prevention of lead poisoning. Furthermore, she connected with several families that had been identified as having a child with an elevated blood lead level and shared their stories during the Family Partner Panel discussion.
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 35 LPHAs reported providing direct services for children with special health care needs, 42 LPHAs reported providing infant developmental screening and referral for suspected/identified delay or disability, 40 LPHAs reported partnering with families to improve health and health care across the life span, and 61 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 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 continued to support school policy change to monitor student health insurance status as an indicator of access to quality health care. SHP tracked insurance status as a question in the SHORS database; 2018-19 experienced a decrease in the voluntary reporting by school districts, but in review of those that have continued to submit data, there continues to be an upward trend in the number of districts that inquire about student insurance status. Of the 518 public school districts in Missouri, 74% of them reported asking if students have health insurance (384 of 518 public schools). SHP also promotes school health staff efforts in care coordination and support in managing chronic health conditions. SHP continues to promote the School Nurse Link (www.schoolnurselink.com) as a resource available to all school nurses as they work to support families to access services, utilize their healthcare and insurance benefits, and find health insurance resources.
SHP identified content experts and scheduled a series of interactive web-based learning events to continue the Nurse Education Webinar Series (NEWS) and provide professional development for school nurses. The 2018-19 series focused on standards of practice in school nursing, with targeted training in Care Coordination and Health Care Action Plans. An average of 68 participated in the live webinars, and 732 registered for the series with the option to attend the live program and/or access the file of archived programs. SHP submitted the NEWS project to the AMCHP Innovation Station, and the project was accepted as a Cutting-Edge Practice to be included in the searchable database of MCH programs across the U.S. SHP also has the opportunity to work with AMCHP staff to further move the practice up the continuum.
SHP continues to support the AAP and CDC Training, Education, Advocacy, Mentoring and Support (TEAMS) framework as a tool for systematic review, evaluation and improving school health services in a growing cadre of school districts. The identified critical issues and emerging action plans among the participating school districts demonstrate that they recognize the role school nurses have in the medical home, especially students with chronic health conditions and healthcare needs. Overall, the focus of the improvement plans being developed by these school districts is to improve school health services participation in care coordination to support the student for academic success. For the 2018-19 school year, three additional districts were added, bringing the number of school districts the SHP is supporting with resources and technical assistance to implement the TEAMS framework to 20, with student enrollment ranging from 955 to 23,854.
SHP is a founding partner and member of the advisory board of Show-Me School-Based Health Alliance of Missouri, now an affiliate of the National School-Based Health Alliance organization. Within this partnership, SHP tracks the number of school-based health clinics and services. Presently, 50 of the 114 Missouri counties and 1 independent city have at least one school-based health program site (https://moschoolhealth.org/resources). The sites, the health services offered, and the funding structures of each of these school-based clinics vary by the needs and local resources of the individual communities.
Newborn Screening
The Newborn Screening educational booklet includes information regarding the importance of a medical home for all children with and without special health care needs. This booklet is distributed to new and expectant parents in Missouri. In 2018, parent surveys were updated to include a question asking parents if their child has a medical home based on a definition provided. These surveys are distributed to parents of newborns who have had a high risk newborn blood spot screen that resulted in confirmation of a disorder as well as a random selection of newborns with normal blood spot screens. For parents of children with a normal newborn screening result, 5 out of 6 surveyed felt that their child had a medical home. Of those with a confirmed positive, survey results revealed 100% (17/17) felt that their child had a medical home. These were from parents of children who had a high risk newborn screening result and were diagnosed with a confirmed disorder by additional testing with a specialist.
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. In FFY 2019, there were 3,022 Missouri newborns that missed or failed to pass the newborn hearing screening.
The NHSP provided funding to the SHCN Family Partnership to employ two Family Partners who are parents of children who are deaf or hard-of-hearing (FP-DHH) to support Missouri families involved in the early hearing detection and intervention (EHDI) process. The FP-DHHs offer parent-to-parent support, assist and encourage families through the follow-up screening and diagnostic process, share information about resources related to hearing loss in infants and children, and educate families about the benefits of a medical home approach. Each FP-DHH has access to professional interpreters and NHSP brochures in Arabic, English, Mandarin, Spanish, and Vietnamese.
The NHSP modified its website to include a section for primary care physicians (PCP). The new web pages emphasize the PCP’s role as the medical home for a child who is DHH. The site explains how the PCP guides the family through the EHDI process by referring a newborn who did not pass the newborn hearing screening to an audiologist for diagnostic evaluation before three months of age and ensuring the diagnostic evaluation took place. The PCP web pages also describe appropriate referrals to other medical specialists for problems related to hearing loss such as an otolaryngologist, ophthalmologist, cardiologist, and a geneticist.
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). From October 2018 to September 2019, 635 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 FY20.
All Schools for the Severely Disabled were visited by ODH’s Oral Health Consultants during the 2018-2019 school year through the Preventive Services Program. A total of 370 students had an oral health screening and 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.
* Interpret with caution due to sample size limitations.
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