PRIORITY 5: Communities, families, and providers have the knowledge, skills and comfort to support transitions and empowerment opportunities
 

NPM 12: Transition: Percent of adolescents with and without special health care needs, ages 12-17, who received services necessary to make transition to adult health care.

 

 

Local MCH Reach: Based on SFY2021 MCH Aid-to-Local applications received:

• 8 of 67 grantees (12%) plan to provide services to the Children with Special Health Care Needs (CSHCN) population
• 8 agencies plan to serve as a KS-SHCN Satellite Office

 

 

Objective: 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.

 

The partnerships and supports developed through the KS-SHCN Holistic Care Coordination (HCC) model provides a strong foundation and infrastructure to maintain the focus of assuring CSHCN have access to medical homes, however the program evaluation and the needs assessment process indicated that a stronger focus needed to occur around transitions for the CSHCN population in the future. moving forward. Transition to adulthood for youth with SHCN is one of the many components of a comprehensive and coordinated medical home and the new priority focus will integrate and align nicely with the existing HCC model and assist with strengthening the overall system of care.

 

Throughout the Needs Assessment and implementation of the HCC model, transition planning for youth and adolescents ages 12 and older has been identified as a gap. Youth with special health care needs (YSCHN) and their families generally do not receive guidance on transition planning from their health care providers or other support systems. Additionally, health professionals continue to note the importance of health care transition (HCT), but many have struggled to incorporate transition planning into their practices. Many providers have stated that they lack the capacity and resources to effectively plan for transition with their adolescent patients, despite an interest in doing so.

 

Transition discussions generally begin around age 12, however the KS-SHCN program policy requires that at least one transition goal for any client with an action plan age 14 to 21 years. To align with NPM 12 and national recommendations, KS-SHCN will shift for the 2021-2025 grant period to require the transition goals for those over the developmental age of 12.

 

GotTransition Recommended HCT Timeline

 

As per the holistic care coordination model, transition is not only focused on transitioning from pediatric to adult health care systems but transitioning in all aspects of life (e.g., self-advocacy, health and wellness, health care systems, social and recreation, independent living skills, education). Care Coordinators work YSHCN and family to develop goals that meet their needs and help them grow and become proficient in self-care and advocacy.

 

Health Care Transition (HCT) Planning: To develop a comprehensive transition plan in health care practices, providers must engage the youth and their caregivers in the planning process. Transition discussions can be a sensitive subject, especially for YSCHN entering unknown territory, and many challenges may present themselves:

• YSHCN may be concerned about what more will be expected of them.
• Parents/caregivers can have trouble “letting go,” as so much of their life has been focused on caring for the adolescent.
• Adult health care providers can be hard to find (particularly in rural areas).
• Hesitant adult providers due to lack of experience in serving YSCHN.
• YSCHN may be struggling to find flexibility in employment schedules and/or concerns about missing school.
• YSHCN transition planning takes additional time and resource for busy provider practices, where reimbursement for transition is not widely available.
• Pediatric and adult providers may need several consultation visits or move slowly to support the YSHCN and their family.

 

KS-SHCN will research evidence-based models, such as the Six Core Elements of Health Care Transition 2.0 through GotTransition.org, that provide practical guidelines and recommendations to providers when developing their own transition planning protocols or curriculum around these six core elements.

 

KS-SHCN will conduct a review of existing transition materials and tools utilized by the Care Coordinators to streamline transition practices across Satellite Offices (SOs) and develop technical assistance supports for providers across the state. KS-SHCN Care Coordinators and staff will be available to offer these supports to providers of mutual clients, assisting them to problem solve challenges and barriers to creating transition plans for their YSHCN patients.

 

Title V is continuing to engage in state-level discussions around telemedicine for all populations, and the KS-SHCN program will engage in this effort as related to the direct 1:1 Care Coordination supports for YSCHN and families to support program transition planning, as well as include this as part of the technical assistance offered to health care providers. It is the programs staff’s belief that telehealth is a great way to reach adolescents and provide the transition assistance they may need in an easy and comprehensive manner. KS-SHCN will pursue technology advancements within the program, considering integrated telemedicine possibilities within the KS-SHCN electronic records system, Welligent.

 

As part of the HCC model expansion (described in more detail in the Cross-Cutting Plan narrative), KS-SHCN will engage in the development of the transition components to that expansion effort, supporting providers who want to build HCC and transition programs within their practice.

 

Transfer of Care: Once an adult provider is identified, the pediatric provider should begin the transfer of client information, including up-to-date medical records, to ensure a smooth transition of care. Communication between the two providers should also occur to make sure everything is consistent and as easy as possible for the clients. The HCC provided through KS-SHCN can support this by utilizing strategies and tools identified through GotTransition.org.

 

Identification of quality transition readiness tools will also be a part of this process. As KS-SHCN staff review transition tools and resources that can be shared with provider, health agencies, and families but especially adolescents, it will be important that tools and resources follow evidence-based practices and policies. The more a youth can assess where they are in the transition journey and have tools and resources to help guide them as they move through this process, the higher their success rate will be.

 

HCT Systems of Care: Title V will continue to monitor insurance and financing needs related to HCT and work with both public and private insurers to support adequate reimbursement rates for transition. HCT practices require additional time during medical appointments and wrap around supports to help guide youth and families through this process. Providers have shared that without adequate reimbursement it is challenging to take the time to work on effective HCT planning. However, it is recognized that truly effective transition planning, supporting the full needs of the youth/family, can’t solely focus on the health care component, and must look more holistically. There are many other aspects to consider when supporting YSHCN in their transition journey (e.g., education, social, housing, work). KS-SHCN Care Coordinators will work with YSHCN to set holistic goals to help them reach their full potential and ensure a smooth transition into adult living.

 

This holistic approach will take alignment with many other systems and agencies. Utilizing The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy as a guide, Title V will engage in efforts across systems to support the vision outlined in this plan. It should be noted that this plan is presented by the Federal Partners in Transition (FPT) Workgroup and is reflective of a cross-systems approach to provide supports and services to youth with disabilities. Several federal departments and agencies were involved, including the Departments of Education, Health and Human Services, Labor, and the Social Security Administration. While Title V is not named specifically in this plan, there is clear alignment to the Kansas Title V vision for supporting transition through the population health/system of care lens.

 

Excerpt from Federal Plan Executive Summary

 

Objective: Increase the proportion of families who receive care coordination supports through cross-system collaboration.

 

Holistic Care Coordination: The KS-SHCN program will continue to provide HCC services as described in the CSHCN Report. More information about program expansion efforts for KS-SHCN can be found below and information about the HCC statewide expansion, replicating the KS-SHCN model in other programs, can be found in the Cross-Cutting Plan.

 

Bridges Pilot Program: KS-SHCN and the Part C tiny-k program (early intervention) identified a service gap for children and their families moving from Part C services to 619 Part B/community services. This can be a very difficult and stressful time for both the child and family and with the loss of the Part C/tiny-k Family Service Coordinator (FSC) many families find it difficult to navigate the various systems of care, such as medical, educational, social, legal and financial. To address this, KS-SHCN and tiny-k are working on a formal partnership to “bridge” this gap and support families. Referred to as Bridges, this will be a new program that falls under the KS-SHCN services.

 

Bridges is currently under development and will provide HCC to any child served through tiny-k that is exiting services until the child reached 8 years of age, regardless of movement to school-based early childhood special education programs (Part B/619) or community services. These services are voluntary, and families can opt out at any time. Recruitment of pilot sites (both tiny-k and SHCN SOs) will occur in the fall of 2020. Additional training for the SHCN Care Coordinators (SHCN-CC) will be expanded to include more detailed information on school assessments, Individual Family Service Plans (IFSP), Individual Education Plans (IEP), 504 Plans, and Individual health Care Plans (IHP) etc. Other program activities under development include: service protocols; informational materials; data collection efforts; evaluation/monitoring activities; and a family survey.

 

The pilot is expected to begin later this year (Fall 2020) with services being offered to families by the tiny-k FSC, who will identify children aging out of tiny-k services 3 months prior to the child’s 3rd birthday. The FSC will share information with the child’s family about the Bridges Program and ask them if they would like to participate. If so, the family would complete a brief application form and a Release of Information so that the tiny-k providers and SHCN-CC can communicate necessary information to help transition be as seamless as possible.

 

Moving forward, program leadership for both KS-SHCN and tiny-k will engage in regular data quality improvement activities to design the most beneficial program for children and families. Data collected will be synthesized and reviewed quarterly to identify the following: gaps, staff training and capacity needs, program cost analysis, and family feedback. By careful monitoring, data collection, use of quality improvements measures, and listening to the families it is hoped that within one year, the program will be refined and transition from a pilot project to a main part of the KS-SHCN program service menu.

 

CSHCN Systems Alignment and Integration: Title V CSHCN Leadership, including the Title V CSHCN Director, Children & Families Unit Director and KS-SHCN Program Manager, will continue to focus efforts this year on partnerships among addressing the behavioral health and foster care systems to support expansion of the KS-SHCN HCC model. In partnership with the Child/Adolescent Health and Behavioral Health Consultants, the program will collaboratively build partnerships across agencies and providers in these systems across Kansas. Title V and public health recognize the importance of an integrated approach for optimal health outcomes, therefore learning about services offered across the state and building partnerships and referral sources is critical to meeting the needs of the CSHCN population.

 

It's recognized that the CSHCN population is considered an at-risk, vulnerable population; however, there are additional factors that put the CSHCN population at greater risk for inequities and disparities. In addition to the traditional social determinants of health a population-health approach, there are other risk factors that put CSHCN at greater risk (e.g., adverse childhood experiences, food insufficiency, foster care, access to behavioral health services).

 

According to the National Survey for Children’s Health (NSCH) 2017-2018 combined data indicate that CSHCN experience two or more ACEs at a much greater rate (42.1%), as compared to non-CSHCN (14.3). Additionally, only 39.4% of families of CSHCN reported no ACEs, as compared to 60.7% of non-CSHCN families. Families of CSHCN experience food insufficiency/insecurity at higher rates than non-CSHCN families with nearly half (47.1%) of CSHCN families reporting they had trouble eating good, nutritious meals in some way. Almost 10% of CSHCN families reported they sometimes or often could not afford enough to eat (2.6% for non-CSHCN families). Access to mental health treatment or counseling is also more challenging for the CSHCN population, with almost 20% reporting it was very difficult or not possible to obtain care (twice as many as the non-CSHCN population).

 

The Title V CSHCN program will work to identify opportunities to partner and strategies to deploy to help address some of these disparities and partner with organizations that are working on family resiliency to address the impact and availability of support for CSHCN with high ACEs and food insufficiencies. KS-SHCN and the Title V Family Advisory Council (FAC) have been working on efforts to partner more with the behavioral/mental health community to provide stronger supports to families, specifically to work on access to service concerns noted by families.

 

Another great concern from a systems perspective are CSHCN in the foster care system. The FAC members have reported concerns with the lack of dedicated training, supports, and consideration of the specialized needs of the CSHCN population in the foster system. KS-SHCN has expanded eligibility criteria to support the automatic qualification of foster children into the program who meet medical eligibility criteria. Since this policy was put in place, KS-SHCN Care Coordinators have seen a significant increase of applications for children within the foster system and expect this trend to continue. KS-SHCN provides HCC services to children/youth in the foster system and strive to follow them as they transition from foster care to reintegration or adoptive homes. KS-SHCN will continue to work on building stronger partnerships with foster agencies to support their understanding of the program’s services and supports. Additionally, it is desired to develop shared protocols or processes between Title V and the foster system (e.g., KS-SHCN Care Coordinator and Foster Care Case Manager communication) to lessen the case managers burden and assist in navigating the various systems of care for the child/youth/family.

 

Family Systems Navigation Trainings: Formerly known as the Family Care Coordination Trainings (FCCT), the FAC requested a title change to the training to better support marketing and recruitment. It was felt that the focus on care coordination in the title made it more challenging for families to engage and see why this was for them. They felt that family recruitment was challenging due to the name of the training. A newly designed flyer was also created and will continue to be used to draw more attention to the training. This can be found in the Supporting Documents.

 

This past year, a train-the-trainer curriculum was developed and will continue to expand until there are a total of six trainers (three English and three Spanish-speaking). New trainers will be recruited first from the FAC for those interested in conducting these trainings for families and youth. Trainers are provided training, tools, resources, compensation and on-going support from KS-SHCN. This further extends the capacity of the KS-SHCN program while supporting family professional development and allowing a peer-to-peer model to learning. KS-SHCN bi-lingual staff are translating all materials, tools and the PowerPoint presentation modules into Spanish.

 

KS-SHCN planned to offer quarterly trainings across the state, but due to COVID-19, adjustments are expected. This intensive in-person training does not lend itself to a virtual model. KS-SHCN will work with community partners, grantees, partners, and SO staff to plan and implement these trainings at different location across that state.

 

 

Other CSHCN Health Objectives

 

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

 

Title V CSHCN has fully embraced the implementation and advancement of the National Standards for Children with Special Health Care Needs. Guiding the development of the State Plan for Systems of Care for Children and Youth with Special Health Care Needs. The Bureau realignment described in the Workforce Development and Capacity section has created new capacity for the Title V CSHCN Director and Children and Families Unit Director to engage in higher systems level discussions to advance systems of care work and better support the KS-SHCN program. This allows the program to focus on state mandated work and align with federally mandated expectations. Throughout the 2021-2025 reporting period, the State Plan will be reviewed annually with the FAC and priority areas will be identified for the program to work on. In FFY21, the focus will be on identifying gaps in the plan, specifically noted is within the insurance and financing domain, and will build a collaborative network of programs, providers, partners and families dedicated to advancing the systems of care to best meet the needs of the CSHCN population. The current state plan is viewed as a road map to strengthen services and supports for CSHCN and their families.

   

KS-SHCN and Medicaid Partnership: KS-SHCN will continue to work collaboratively with Medicaid and MCO partners to assure clients are receiving appropriate services, and filling gaps in the services and supports provided by the MCO for dually enrolled clients. Partnerships between the MCO Case Managers and the KS-SHCN Care Coordinators, while strong, will continue to be a focus for partnership growth in the coming year. Turnover within the MCO staffing, as well as the need to continue to expand referral networks for KS-SHCN necessitate ongoing collaborative efforts. Formal partnerships with the MCOs are desired to support inclusion and expectation of KS-SHCN partnership during MCH Case Manager training and onboarding procedures. KS-SHCN will continue to offer educational presentations to MCO staff upon request, to provide a better understanding of the program and how complimentary the programs can be to each other, while reducing duplication.

 

Conversations with Division of Health Care Finance (DHCF) staff will continue to discuss shared Title V and Medicaid objectives. Building from the relationships created with the KS-SHCN program with DHCF/Medicaid staff around improving support services for clients with cleft lip/cleft palate, Medicaid is requesting a fiscal review to determine if the current reimbursement rate is enough to cover the services provided by dental and orthodontic providers. This is the first step towards a desired partnership with Medicaid to reduce the barriers and challenges typically faced by families in obtaining approval and coverage for these services. Kansas Medicaid policy indicates these are medically necessary. The SHCN programs would like  open discussion with Medicaid to consider a carve out for these children that could be administered by KS-SHCN and eliminate long waits for approval and repeated appeal processes for families.

 

Another partnership area of interest is reimbursement for care coordination services. Research across care coordination financing models will take place in the coming year and will drive discussions with DHCF and private insurers. Data collected through the primary care HCC expansion pilot (described in the Cross-Cutting Plan) will also be utilized to identify needs and adequate reimbursement rates to support these services across the state. It is believed the adequate reimbursement will help providers bring in the revenue to support having a Care Coordinator on staff to work with families and assist in their goals of establishing a comprehensive medical home. Under the OneCare Kansas approach to service coordination, it is believed that this same model could be established for the general child population.

 

OneCare Kansas Brochure

 

 

Insurance and Financing Systems of Care for CSHCN: The KS-SHCN program continues to see gaps in services for the CSHCN population due to their unique health care needs. Beginning in SFY21 Title V and KS-SHCN program staff will put together a plan to identify gaps in insurance coverage, inadequacies across coverage options, and review the affordability of coverage for CSHCN. Aligning with the National Standards, building from the System of Care State Plan, and engaging key partners, families, and communities, Title V will build strategies, partnerships and policies to overcome these challenges.

 

To date, KS-SHCN has identified the following considerations for this work: coverage and availability of DME’s and medications; proper provider reimbursement; necessary medical supplies; reimbursement for telehealth, care coordination and transition services; and adequacy of family-friendly Medicaid policies. Staff know that there are many other things that will be added to the list and will need to work with families and consumer to determine priorities for the CSHCN population and actions to be taken.

 

 

Other KS-SHCN Program Activities

 

The KS-SHCN program will continue to: provide HCC services to those with medically eligible conditions; financial assistance through the Direct Assistance Programs (DAPs) and Special Bequest, meeting eligibility requirements; program strategic planning; staff workforce development; data system enhancements; quality improvement activities; peer supports; and family and consumer engagement efforts. Read more about these efforts in the CSHCN Report narrative.

 

Peer Supports for CSHCN: KS-SHCN will continue to engage as a Supporting You Network Program within Supporting You. Read more about Supporting You in the Cross-Cutting Report and Plan. Specifically, KS-SHCN would like to offer both English and Spanish support peers and will work with the Network to determine the feasibility of doing this.

 

Per interest and recommendation from the FAC, KS-SHCN plans to partner with the Kansas Chapter of the National Alliance for Mental Illness (NAMI) to provide the Ending the Silence training for adolescents experiencing mental health needs. Currently, NAMI provides trainings in school settings to support adolescents in understanding the importance of taking care of their mental health needs, when to seek help, and resources/tools to respond in a positive manner to those experiencing a mental health situation. This will help to decrease stigma associated with mental health conditions, providing an outlet for adolescents needing supports to reach out. Additionally, youth may be more likely to provide support for their peers when they feel more equipped or have a better understanding of where they are coming from.

 

From NAMI Kansas Offering Brochure about the Ending the Silence Presentation

 

Care Coordinator Training and Workforce Development: The annual SO training for SFY21 will be a series of webinars/zoom meetings, rather than a two-day in-person meeting. One topic of interest is Mental Health First Aid – Youth. The program will continue the tradition of the bi-monthly webinars, with guest speakers regarding services and supports available across the state, and “brain trust calls,” to allow peer support/learning with the presentation of case examples to help brainstorm ideas and solutions that can address the needs of specific problems.

 

Service Coordination, Referrals, and Marketing: KS-SHCN continues to increase collaboration and coordination with service delivery systems that often serve as a referral point for the program. Recent organizational shifts within the Bureau of Family Health aligned the MCH and KS-SHCN programs under the Children and Families Unit and Section. One major benefit to this organization is the ability to strengthen collaboration across all program and work on shared protocols to support strong referral practices and assure families receive timely, appropriate, and complete referrals for services and supports. Other initiatives that support stronger service coordination and referrals are outlined below.

• Annual Report. The KS-SHCN Annual Report will be compiled and disseminated as an effort to highlight key programmatic activities throughout the year and progress status towards program goals and objectives. The Annual Report can enhance effort towards building new partnerships and promote the work of the program, raising awareness of the services provided and reach of the program.
• Clinic and Community Supports. KS-SHCN has awarded local grants to provide infrastructure and administrative supports for three health clinics (e.g., wheelchair seating; cleft lip/cleft palate clinic; and medical complexities clinic) and a youth leadership development program. These are ongoing initiatives with more information outlined in the CSHCN Report narrative.
• Marketing Campaign. Recent programmatic changes, to better support families and address needs, have not resulted in greater reach of the population. Therefore, a robust marketing campaign will position the program to increase awareness of program services and connect more families through community-based referrals. The campaign will target healthcare providers, home visitors local ITS programs, and families. The KS-SHCN Decision Schema developed in 2019 will be a central part of this campaign. The campaign will also help to differentiate KS-SHCN from KanCare and help families recognize the added supports available.

 

Program Policy & Service Delivery Changes: Remaining relevant among ongoing shifts to the health care industry and changing needs of communities is critical for a program like KS-SHCN. The program reviews program data annually to adapt and provide meaningful and coordinated supports to families. This generally includes: HCC data review; a determination of statewide or local clinical support needs; DAP service utilization; and policy revisions.

• New HCC Eligibility. KS-SHCN is now offering HCC service to applicants who qualify medically, removing financial eligibility requirements. Prospective clients will still be required to complete the full application, to provide opportunity for the Care Coordinators to determine if they are eligible for other supports too, however this is expected to increase the number of families the program can reach. Careful monitoring will assure program staffing capacity is assessed regularly to meet the needs of the additional clients.
• SO Changes. Data is reviewed annually around the reach and impact of each SO, to determine if a shift in staffing, regional boundaries, or resources is needed. While the number of SOs will remain the same, to determine if a shift in regional SO boundaries is warranted one past SO (Wyandotte) will discontinue services June 30, 2020 and a new one (Neosho) will begin providing services July 1, 2020. Upon assessment of the population served, including geographical location and language(s) spoken, the new SO will provide an additional bi-lingual staff to serve the roughly 20% Spanish-speaking clientele, improving service delivery and reducing burden for state bilingual Care Coordinators.
• Service Changes. Annually, the program reviews the utilization and funding needed for each DAP to determine if new services need to be offered to address service gaps. This review can also help identify if a DAP may not be needed any longer, due to poor utilization. While there are no proposed DAP changes, a significant program change includes changes to service eligibility. As of July 1, 2020, the KS-SHCN will no longer accept applications for individuals beyond 21 years of age, with the exception of applications from adults requesting metabolic treatment product assistance for the conditions of PKU or MSUD. Historically, the program has provided all services to those with metabolic/genetic disorders (screened through the newborn screen) into adulthood. The Newborn Screening expansion efforts to conditions like spinal muscular atrophy (SMA) or severe combined immunodeficiency disease (SCID), with high cost treatments, have posed a challenge to a program with limited fiscal resources to provide services to all adults with these conditions as well. Therefore, discontinuing adult services can ensure funding can be used for the intended target population, children with special health care needs.
• Enhanced Data Capacity. KS-SHCN will work with the data vendor to continue enhanced data reporting and evaluation capacity, specifically tracking and monitoring direct and indirect care coordination activities, referral sources, outcome measures and other data elements. Additionally, the program plans to develop a family portal for the system, so families can access key program information and documents (e.g., action plans, service authorizations), update their application, and send secure messages directly to their Care Coordinator.