Local MCH Reach

Based on SFY2024 MCH Aid-to-Local applications received 7 of 56 grantees (13%) plan to provide services to the Children with Special Health Care Needs population. As related to each objective within Priority 5:

• 6 of 7 grantees (86%) plan to provide services necessary to make transition to adult health care
• 4 of 7 grantees (57%) plan to improve the function of systems of care for CSHCN

• 5 of 7 grantees (71%) plan to provide care coordination supports to CSHCN and their families

Transition Initiatives

Objective 5.1: Increase the proportion of adolescents and young adults who actively participate with their medical home provider to assess needs and develop a plan to transition into adult health care systems by 5% by 2025.

Health Care Transitions (HCT) Systems of Care: The Kansas Title V team recognizes the importance for youth and young adults to have adequate health insurance. Insurance is not something most adolescents think about as they are transitioning into adulthood but is critical for them to have access too. The Title V team continues to monitor insurance and financial needs related to HCT by working with both public and private insurers to support adequate reimbursement rates for transition. 

The Holistic Care Coordination (HCC) model uses a lens that focuses on all aspects of moving from adolescence to adulthood. This includes all aspects of life (e.g., self-advocacy, health and wellness, health care systems, social and recreation, independent living skill, and education). Effective HCT takes additional time and effort by providers during medical appointments to make sure the adolescent has all the services in place they need for a successful transition, however without adequate reimbursement this becomes challenging and if the adolescent has special health care needs it becomes even more time intensive and difficult. Title V works with providers to understand that HCT is not just medical but helps them understand the holistic approach that includes all aspects of an adolescent's needs (e.g., family needs, education, social, housing, employment). The KS-SHCN Care Coordinators continue to work with the adolescent, their family, and providers to understand the importance of transition and to develop holistic transition goals to help them reach their full potential and have a smooth and successful transition into adulthood.

Health Care Transition (HCT) Planning: Within the SHCN program, every client aged 12 and up will continue to have a transition goal included in their action plan which will continually be monitored and supported by the SHCN Care Coordinators.  Care coordinators provide youth and their families a variety of tools and resources depending on the youth’s transition needs. They also share the Think Big Transition booklets with all youth and families on the program. These booklets provide general examples of what transition skill milestones the youth should be achieving based on their age or developmental age (birth -6 years, 7-13 years, and 13 year and up). These free booklets will continue to be made available to schools, partners, and families upon request.

SHCN Care Coordinators will also continue to refer families to the Got Transition website for additional resources. The Got Transition Readiness Assessment tool will continue to be recommended by care coordinators for youth on the program to complete. The Got Transition website will continue to be promoted by the CSHCN Director with partners across the state and as a resource for System Navigation Trainings for Families (SNTF) and System Navigation Training for Youth (SNTY).

During FY24, The CSHCN Director will be researching reimbursement supports for transition services with Medicaid and other insurance providers in the state to determine what is currently available to youth and their families. The director will engage with members of the Family Advisory Council, conduct focus groups, and implement a family survey to identify what transition supports are reimbursable currently and where there are gaps. Based on information learned, a work plan will be created to prioritize transition services and supports that might be able to be to be billed to Medicaid and other insurers to improve transition services for youth with special health care needs.

For many families, costs associated as children with special health care needs begin to age out of the program are one of the barriers preventing children from taking the next step in independent or self-sufficient living settings. SHCN looks to add a direct assistance program (DAP) specifically focused on reimbursement or upfront coverage for costs associated with transition.

Local MCH Agencies:

• Barton County Health Department will increase the number of times transition education is provided to MCH clients by 10% (122 times).
• Community Health Center of Southeast Kansas will assist 100% of special needs children in the MCH program in transitioning care from infancy into adulthood and beyond. The most common transition is from a pediatric to an adult provider. Providers and MCH Case Managers will provide direct support in transition services.
• Crawford County Health Department will continue to serve as a SHCN satellite office, providing transition and care coordination services as well as participating in the BRIDGES pilot program.
• Miami County Health Department will start using a transition readiness assessment with their clients aged 12-21. Since this is the first year, they hope to have assessments completed by 25% of their clients.
• Nemaha County Community Health Services will begin completing transition readiness assessments for all adolescents who have a well visit. This will expand on the transition readiness assessments they complete with CSHCN. Transition readiness assessments for CSHCN will be documented in Welligent and assessments completed as part of the adolescent well visit, for those not eligible for the CSHCN program, will be documented in DAISEY.

Systems Initiatives

Objective 5.2: Increase the proportion of families of children with special health care needs who report their child received care in a well-functioning system by 5% by 2025.

CSHCN Systems Alignment and Integration: For children with special health care needs to received care in a well-functioning system it calls for strong partnerships and collaboration among a variety of state and local partners. Kansas Title V believes that partnership is key and will continue to strenghten collaborative efforts with current and newly identified partners in FY24. Below is a list of key activities that will be worked on over the next year with specific partners, however as new partnerships are formed systems alighnment and integration will continue to grow.

Department of Children and Families (DCF): The CSHCN Director will continue to work with staff from DCF to help them link children with special needs in the foster system to the SHCN program. Currently any child who meets a special health care needs condition in accordance with the state statue and is a ward of the state of Kansas is automatically eligible for the SHCN Program. In parternship with DCF staff, additional gaps and barriers will be identified and solutions developed to overcome challeges for this high need population. 

Kansas Department of Aging and Disability Services (KDADS): The CSHCN Director will continue to partner with KDADS regarding Home and Community Based Services. The wait list for the IDD waiver is 10+ years long so the focus will be to work with KDADS and other partners to lesson the wait list. The CSHCN Director will also investigate the possibility of a children with chonic condition state plan amendment.

Bureau of Health Promotion: The CSHCN Director will continue to be on the board of Safe Kids Kansas and work collaborative to improve safety messages for children with special health care needs. The KS-SHCN program continues to partner in the smoke and carbonmonixide detector initiative easablished between the programs several years ago. The director also participates on  Palliative Care Council meeting bring the child perspective to the council. While the council understand the needs for adults the needs for children with chronic special needs is not always addressed. The director will be researching palliative care services currently provided in other states, how they are funded, and the information shared with families who need it.   

Kansas Commission on Disability Concerns: The CSHCN Director will continue as the Secretary’s designee for KDHE. This allows for a variety of partnership connection with a wide variety of agencies in the state who provide services and supports for those with disabilities.

Kansas Council on Developmental Disabilities (KCDD): The SHCN Director will continue to be an active member of this council and also serve as part of the governance sub-committee. The director will partner with the KCDD staff to hold a Supported Decision Making Summit focused on educators who work with tranistioning youth.

Bureau of Family Health Programs: Referrals are passed from a variety of programs with in the Bureau from newborn screenings to home visiting programs.

Medicaid: The parternship between Title V and Medcaid in approving new Wheel Chair Seating Centers in the state will continue to occur. A survey will be developed to gather information from current seating centers to determine if additional centers and providers need to be recruited. A specific protocol will be developed to outline the step by step approval process and information resource will be developed for seating center applicants. The CSHCN Director will also be working with medicaid on financing for orthodontic services, palliative care and others identified through the insurance research work. One additional Medicaid project will be to work with Medicaid and the MCO’s on a referral process to indentify children with special health care needs that might qualify for the KS-SHCN program based on their current algorithms.

Insurance and Financing Systems of Care for CSHCN: With the change in the Title V staffing structure, the CSHCN Director has more flexibility to engage with various existing and potential partners in higher systems level discussions and activities to advance the systems of care work in Kansas. A core component of the CSHCN Directors work plan is to continue to strengthen ongoing partnership, while reaching out to forge new ones. With the knowledge that the more connections and partnerships formed lead to improvements in the systems of care to ensure each child with a special health care need receives care in a well-functioning system. This also allows for more opportunity for ongoing monitoring, implementation and alignment of the standards within the Title V and KS-SHCN program’s goals, objective, policies and activities, further strengthening services and supports for this vulnerable population.

The original plan to identify gaps in insurance coverage, inadequacies across coverage options, including transition services, and review the affordability of coverage for CSHCN population was not completed in 2023 due to staffing shortages and the CSHCN Directors increased workload. This will continue to be worked on moving forward now that the KS-SHCN team is fully staffed and will be aligned with the Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0 - AMCHP and the Systems of Care for Children and Youth with Special Health Care Needs (kansasmch.org), so strategies, partnerships, and policies can be developed to overcome these challenges.

Local MCH Agencies:

• Barton County Health Department will improve documentation of services provided to children with special health care needs. In the most recent full program year, they served six children with special health care needs other than those who qualify for the Kansas Special Health Care Needs Program. They believe their client base likely includes more children with special health care needs than what their reports show (1%) and they want to better identify, document and connect these families to services. They will do this by training all MCH staff on the definition of CSHCN and how to document it on the DAISEY forms.
• CHC of Southeast Kansas will provide and advocate for care that creates a positive experience for children and their families (e.g. sensory rooms, sedation dentistry, etc.); continue to work with specialty centers (e.g. KU) in the provision of services via televideo or on-site that reduces the logistics burden on families; connect families to all available services; facilitate enrollments/participation in state-funded initiatives, develop a local resource guide for families with updated contact information and participation requirements; create a peer support group for family members of children with special health care needs; offer educational sessions of interest; and complete a comprehensive needs assessment for CSHCN in Southeast Kansas.
• Miami County Health Department will partner with a local health coalition and CHW to develop and update a resource list to include a variety of health care providers as well as at least two community agencies and organizations addressing five separate social determinants of health.

Care Coordination Initiatives

Objective 5.3: Increase the proportion of families of children with special health care needs who receive care coordination supports through cross-system collaboration by 25% by 2025.

Holistic Care Coordination: Kansas Title V continues to use the National Care Coordination Standards for Children and Youth with Special Health Care Needs developed by the National Academy for State Health Policy as the guiding framework for the holistic care coordination services provided to clients on the KS-SHCN program. The Special Health Care Needs (SHCN) program continues to grow a network of referral sources for issues including, but not limited to, medical complications, behavioral health conditions, assistive technologies, surgery providers, physical therapists, and education assistance. Care Coordinators continue to attend trainings and webinars in order to maintain knowledge of community partners and referral sources to best provide services for families within SHCN.

Bridges Care Coordination (BCC) Pilot: The Bridges Pilot program was designed to support children and families as they are transitioning out of Part C upon the child’s third birthday and into the Part B or other community services. This is a time, that may families have expressed a feeling of being overwhelmed in knowing how to navigate the systems for care for their child. Additionally, the Bridges Pilot would provide support to those who would not qualify for Part B services upon graduation of Part C services, yet still required support in navigating the system. Bridges was designed to help fill that challenge by providing holistic care coordination services that have been used by the KS-SHCN team successfully for many years, to provide a smooth and stress-free experience for the child and their family.

Monthly touch point meetings will continue to be held with each BCC to provide ongoing support and assistance. Trainings will be developed based on feedback from the BCC’s and identified needs from the CYSHCN Director. This includes a one day in-person trainings that will include the following training curriculum: BCC basics review that will include mock case plan review, team brainstorming and ASQ screening training. Yearly meeting will be held with the Kansas Early Childhood Developmental Services sites where additional feedback and partnership ideas can be discussed to better inform the program. Quality Improvement and quality assurance measures will continue to be used by the CSHCN Director to monitor fidelity and program outcomes. This includes a review of Action Plans to identify the greatest need for parents and support the BCC with additional training in those areas. The information gathered will also be used to provide virtual training webinar for families and make sure these topics are covered in the Systems Navigation Trainings for Families that Bridges families are invited to participant in when held in their locations. A Bridges Family Survey will be developed and sent to families every six months to gain their feedback.

Currently, Bridges is looking to expand referral locations across the state through care coordinators via satellite offices and the possible use of Community Health Workers as BCCs. Additionally, funding sources are being evaluated to further expand the Bridges program to provide increased capacity for referrals and care coordination.

Systems Navigation Training for Families (SNTF): SNTF will continue with a training session offered within each region of the state. These trainings are for families who have children with special needs who want to learn more about services and supports in Kansas and how to effectively navigate them. These trainings not only provide education and resources to families but an opportunity for peer-to-peer support between participants.

During FY24, an application will be developed for individuals with lived experiences supporting individuals with special needs to apply to become trainers. Each applicant will go through an interview process and once accepted will be offered a contract to provide this training curriculum to others. The CSHCN Director will provide the initial training, monitoring, evaluation, and on-going support for all trainers. The curriculum will be updated and include a new formatted look. The most exciting addition to the curriculum will be a personal family story video told by a former Family Advisory Council member through her lens not only as a parent, but the care coordination role she plays for her child. All participants will complete a pre- and post-assessment and changes can be made to the trainings based on feedback. Trainers will also complete a self-assessment that can be reviewed with the CSHCN Director to gain additional training and support where needed.

Translating the SNTF curriculum to Spanish will be pursued in FY24 along with recruiting and training Spanish speakers to serve as trainers. The goal for FY24 is to hold a minimum of four trainings in different location across Kansas. 

Systems Navigation Training for Youth (SNTY): SNTY was designed to help youth with and without special needs understand transition and how to navigate the process and systems. During FY24, the SNTY curriculum will be finalized and applications for youth trainers will be developed and disseminated to colleges for recruitment. The SNTY trainers will go through an interview process and be offered a contract to conduct these trainings in different regions of the state. Pre- and post-surveys will be completed by all participants to evaluate the effectiveness of the curriculum and trainers and to make modification where needed. Self-assessments will be completed by the trainers and shared with the CSHCN Director who will provide the initial training, monitoring, evaluation, and on-going support for each trainer. Since this is a new curriculum, a Plan Do Study Act will be done regularly to evaluate the training structure, activities, curriculum, and trainers. The goal is to hold the first one in the Spring of 2024 and then begin to hold a minimum of 2 each year after that.

Local MCH Agencies:

• Barton County Health Department will improve care coordination supports by reaching out to at least ten agencies in their region, that offer services to support children with special health care needs and their families, to complete a resource map and establish stronger referral process between the health department and external partner.
• Community Health Center of Southeast Kansas will ensure 100% of CSHCN and their families served by MCH staff will have access to and receive care coordination services provided by MCH Case Managers.
• Crawford County Health Department will continue to serve as a SHCN satellite office, providing transition and care coordination services as well as participating in the BRIDGES pilot program.
• Miami County Health Department will develop a protocol for Children with Special Health Care Needs referral processes: currently, there is not a protocol in place.
• Nemaha County Community Health Services will maintain their care coordination services to those in the CSHCN Program. Care coordination services are documented in Welligent. Internal chart audits will be conducted to measure number of participating clients and the care coordination received. They have a trained CSHCN care coordinator who manages care coordination for CSHCN in nine counties. 

Other KS-SHCN Initiatives

Peer Supports for CSHCN: Families who have children with special health care needs often experience things that others do not, so to have support from another who has a shared lived experience can be very helpful. Because of this, the KS-SHCN program is part of the Supporting You Network. Parents are able to share what they have learned with one another and provide/receive emotional support.  During FY24 the KS-SHCN team will continue to promote the Supporting You network with families on the program and through outreach opportunities. See Cross-Cutting Domain for more information.

Care Coordinator Training and Workforce Development: SHCN continues to provide yearly trainings to the satellite offices to ensure alignment on care coordination practices and a unified approach to patient care plans. Additionally, SHCN care coordinators are evaluating the potential benefits of completing Community Health Worker trainings.

Special Health Care Needs Screener: The CSHCN Director will be working with the MCH program and the DAISEY data system team on the implementation of a Special Health Care Needs Screener (CMS2002 (childhealthdata.org)). The screener will be added as part of the infant/child/adolescent visit form in the DAISEY system. Training guidance will be developed to show how to use and score the screener. A decision schema will be developed to assist those using the tool to be able to refer to the correct agency/provider, as needed. A training webinar will be developed to support local partners in the successful use of this new tool prior to implementation. All referrals will be tracked and monitored to make sure children are getting connected with the appropriate resource.   

Data System Improvements: The KS-SHCN Program Manager will be working closely to improve the current data tracking system know as Welligent. Several system changes will be evaluated to improve data reporting, budget tracking and ease of use by staff to assist with improved efficiency.