The Title V program strives to support children and adolescents through life transitions and support empowerment, self-determination, and independence for children with special health care needs (CSHCN). Kansas Title V believes that all CSHCN are simply children first, therefore there is a strong focus on integration and inclusion of transitional supports for all children, youth, and families. Although Priority 5 is the priority associated with the CSHCN population domain, it’s recognized that services and supports established to meet the unique needs of the CSHCN population will almost always meet the needs of the broader children/youth population. In this priority, Kansas will focus on building capacity among communities, families, and providers to support transitions and empowerment opportunities. This will include engagement in health care transition activities for youth with SHCN, improvements to the overall systems of care for the CSHCN population and supporting CSHCN and their families through cross-system coordination and collaboration across the lifespan. The measures associated with this priority are:
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.
ESM: Percent of youth with special health care needs, ages 12 to 21, who have one or more transition goals achieved on their action plan by the target completion date.
National Performance Measure 12: Transition
According to the 2020-2021 NSCH (two years of data combined), only 26.3% of Kansas adolescents with SHCN, ages 12-17, received services necessary to make transitions to adult health care (95% confidence interval [CI]: 17.8%-37.2%). There was not enough evidence to show that this differed significantly from the nationwide estimate for adolescents with SHCN, which was only 20.5% (95% CI: 19.1%-22.0%).
Compared to Kansas adolescents with SHCN, a lower percentage of those without SHCN, ages 12-17, received services necessary for transition into adult health care, at only 18.4% (95% CI: 14.3%-23.5%). However, there was not enough evidence to show that the difference was statistically significant. The estimate for Kansas adolescents without SHCN was also not significantly different from the nationwide estimate for adolescents without SHCN, which was 16.0% (95% CI: 15.0%-17.1%).
By component:
- 41.6% of Kansas adolescents without SHCN had a chance to speak with a doctor or other health care provider privately at their last medical care visit (95% CI: 35.8%-47.6%).
- 60.7% of adolescents without SHCN had had the provider work with them to gain skills to manage health/health care and understand health care changes at age 18 (95% CI: 54.3%-66.7%).
- For 26.4% of adolescents without SHCN, their providers had discussed the shift to adult health care providers (if needed) (95% CI: 19.0%-35.3%).
Weighted Percent of Adolescents with and without Special Health Care Needs (SHCN), Ages 12-17, Who Received Services Necessary to Make Transition to Adult Health Care, Kansas, 2016-2021†
The Annual Percent Change (APC) was not found to be significantly different from zero at the alpha = 0.05 level.
† Note: After 2016, state-level estimates were produced using two-year combined data.
Source: U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), National Survey of Children’s Health (NSCH)
Local MCH Reach: Based on SFY2023 MCH Aid-to-Local applications received: 8 of 61 grantees selected to work on Children with Special Health Care Needs objectives. Seven agencies served as a KS-SHCN Satellite Office. Some of the grantees who reached their goals are highlighted in this report. Those who didn’t reach their goals cited the following barriers:
- Staff vacancies and time needed to onboard when new staff are hired
- Wait times for clients seeking to access services they were referred to through local CSHCN programs
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: Educating youth on transition needs and where to access resources was identified as an area that could be moved forward with the support from an intern with guidance from both the MCH and CYSHCN Directors. The Systems Navigation Training for Families (SNTF) was used as a model to guide the intern in the development of a Systems Navigation Training for Youth (SNTY). The project began with the intern researching transition materials, videos, websites, special needs populations and more to become familiar with what youth would need to help them become empowered as they move into adulthood and independence. Once the research was complete, the intern developed fliers for the promotion of focus groups to help inform the project curriculum and structure. Three focus groups were conducted virtually, and one was held in person. A total of 82 youth engaged in the focus groups leading to a wealth of information about what youth need and want to learn. Since the intern was only a few years older than the youth in the focus groups, they were able to relate to the intern, leading to more open information and idea sharing. Through the information gathered, research conducted, and guidance from the Title V Directors, the intern was able to put together a comprehensive training plan that included: training PowerPoints; a youth transition engagement snapshot; a focus groups evaluation summary; a Youth Transition Training Quick View; a trainer instruction manual; recommendations on SNTY dates/times; a final written report; and recruitment materials for young adults to recruit as participants in train the trainer sessions that will enable them to lead the trainings as contracted staff in the future. This program was developed so that youth can learn from someone they can identify with, so there is a concerted effort to develop trainers that are young adults. The SNTY is designed for all youth, with and without special health care needs, so finalization of the training, recruitment and training of trainers and other program logistics will be a share responsibility of the CYSHCN Director and Child/Adolescent Health Consultant.
While several ideas were developed to strengthen transition supports over the last year many were delayed due to staffing shortage and turn over in staff. With a decrease in staff capacity, the KS-SHCN program at fifty percent and a vacant Child/Adolescent Health Consultant, moving new projects forward was a challenge. During this time frame staff took on additional tasks to keep the work moving for the clients on the KS-SHCN program and other broad Title V special health care needs and child and adolescent work.
Health Care Transition (HCT) Planning: Assisting youth and their families through the critical phase of transition was identified as a top need during the most recent needs assessment, by not only the Title V team, medical and community partners, but also families. For this reason, it was selected as one of Kansas’s National Priority Measures (NPM 12). While NPM 12 is for youth with and without special health care needs, the Kansas Special Health Care Needs (KS-SHCN) program developed and implements a high-quality Holistic Care Coordination (HCC) program that has led to a great starting point for delivery of expanded health care transition services, with the intent to spread and scale tools, resources, and information to all youth. As new tools and resources are developed, they are added to the Whole Healthy You webpage for all adolescents to use.
As part of the KS-SHCN training curriculum the importance of HCT is discussed. Strategies and tools are provided to assist the care coordinators when working with youth and their families in the development of transition action plan goals. The program implemented a policy that all action plans must contain a least one transition goal for all clients ages 12 –21. Staff are familiar with the Got Transition website and the tools and resources it offers. They use it as needed to support a youth in their transition planning. Transition plans follow the Got Transition recommended Heath Care Transition Timeline shown below.
Youth are encouraged to talk to their medical home providers about their transition needs during their annual well-child checkups. Action plans that have been developed by the youth and their care coordinator are able to be shared with the youth’s medical home providers. Action plans are updated and modified based on input from the family, youth, and providers as needed.
Transfer of Care: As adolescents with special health care needs move into the transfer of care stage one of the first steps is to identify an adult provider. This means not only identifying an adult provider but one who is covered by the youth’s insurance and is comfortable with the youth’s special health care need. This can be a barrier for many with special health care needs. Not only does Kansas have a lack of providers, especially in rural areas, but also finding providers with the expertise and comfort level to provide medical services to those with certain medical conditions can be a challenge. Once a provider is selected, then the process of communication between the pediatric provider and the adult provider begins. This includes a transfer of client’s information, up to date medical records, most resent shared plan of care, a copy of a transition readiness assessment, emergency care plan, legal documents, condition fact sheet, and any other client information that would lead to a successful transition. Ideally, communication between providers should occur to discuss the clients unique medical need and establish a process where the pediatric provider can provide consultation to the adult provider, if needed.
The KS-SHCN Care Coordinators assist adolescent clients and their families in the transfer of care process. SHCN currently has 18 children on the program that are within their transition window and are being supported in the finalization of their transition plan. In the last year, we have aided an addition 4 individuals in their transition journey who were aging out of the SHCN program. A variety of resources and guidance in selecting an adult provider that is covered by the adolescent's insurance is provided as needed. Many tools and resources are used to help with the transition experience such as:
- GotTransition.org that provide a variety of transition resources with one of the most important being the Transition Readiness Assessment tool.
- Creating a Good Life- Life Course Framework Creating A Good Life: A LifeCourse Framework - KCDD - Kansas Council on Developmental Disabilities are tools that can be used for transition and long-term planning.
- Transitions Workbooks designed by the Kansas Family Advisory Council. These are available in English and Spanish and offered for three different age or developmental age ranges.
Other transition resources and approaches that are reviewed, aligned with, and utilized as appropriate to continue to strengthen transition work in Kansas include:
1. https://www.dol.gov/sites/dolgov/files/odep/pdf/20150302-fpt.pdf
3. National Care Coordination Standards for Children with Special Health Care Needs
Originally, plans were in place to develop a transition portfolio however, due to staffing shortages and feedback from an intern who worked on the Systems Navigation Training for Youth (SNTY) project a Youth Transition Training Quick View was developed instead. The quick view has been developed; however its implementation has been delayed due to staffing shortages but is available to youth on the KS-SHCN program. If identified as a need later, a transition portfolio might still be developed in the future.
Local MCH Agencies:
- Barton County Health Department educated their community about the services available through their CSHCN program. They attended two large events, Convoy of Hope and the community baby shower, and presented on a local radio show.
- Community Health Center of Southeast Kansas assisted 100% of child clients with special health care needs with transitioning from a pediatric care provider to an adult provider at age 17.
- Crawford County Health Department focused on promotion of CSHCN services, such as transition assistance, provided in their region. They shared CSHCN brochures, decision schema posters, and Family Advisory Council postcards with neighboring health departments in Bourbon, Cherokee and Labette counties, as well as KanCare case managers, to acquaint new staff with the program and reacquaint those who had been solely focused on the pandemic response for the past two years. They also completed Transition to Adulthood training and formed a new partnership with a coordinator from the Kansas Department for Children and Families (DCF) who will help promote and provide CSHCN transition services.
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.
KS-SHCN and Medicaid Partnership: The KS-SHCN team and CYSHCN Director value the importance of a collaborative partnership with Medicaid Managed Care Organizations (MCOs) to provide the best services and supports possible to the clients on the SHCN program. This partnership begins with a monthly shared report to identify mutual clients. The report includes the MCO care coordinator’s name and contact information, and the services that the client receives from both the SHCN program and the MCOs. Communication happens between the MCO care coordinator, client/family and the SHCN care coordinator to make sure things are flowing smoothly and the client/family's needs are being met. Any identified gaps in services or supports are addressed by the SHCN care coordinator in partnership with the family. The KS-SHCN care coordinators work collaboratively with the MCO care coordinators, navigators, or case managers to ensure that there is no duplication of services and to help advocate for coverage through the MCO for the family as needed. Anytime that an individual on our program is also on Medicaid, our care coordinators reach out to the MCOs to get in contact with the case manager to best determine how to further assist the child. Most recently, we have had a family that was completely unaware that their child was approved for a waiver. Through this strategic partnership, our care coordinator was able to notify the family and work collaboratively with an MCO to provide a bathroom remodel which allowed for increased accessibility for the child in their own home. This partnership started several years ago and continues to be strengthened each year.
The CSHCN Director worked closely with Medicaid staff to develop and refine the process for agencies who specialize in wheelchair settings to become approved services providers. This collaborative effort has increased availability of seating services in Kansas while still holding providers to high professional criteria as experts in their field. Joint reviews of new provider applications occur with input from Title V before a final determination is made by Medicaid. Once a new seating center provider is approved, they are then trained on Medicaid billing and allowed to start billing Medicaid for services while the KS-SHCN program fills any non-covered specialized items/parts for children on the KS-SHCN program.
The partnership between the Title V programs and Medicaid continues to be a strong focus within the Title V work. With review, modifications, and updates to the Memorandum of Understanding every few years this allow for the growth and expansion of the partnership in a productive way.
Insurance and Financing Systems of Care for CSHCN: Upon release of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0 | Lucile Packard Foundation for Children's Health, the Title V team began using this guiding framework for the KS-SHCN program. This has been shared frequently with partners across the state in hopes that they adopt these standards as best practice within their facility and implement policies and procedures that align with the standards. Due to the change of the CSHCN Director position becoming full time, there is 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.
Due to a shortage in staff for the KS-SHCN program during this time period, the CSHCN Director lead the SHCN team and assumed multiple components of the day-to-day operations of the KS-SHCN program until a new SHCN Program Manager was hired in July 2022. This created a barrier of being able to move some of the systems work forward, as originally anticipated. While work continued with Medicaid on several areas, the original plan to identify gaps in insurance coverage, inadequacies across coverage options and review the affordability of coverage for CSHCN population was not completed. This will continue to be worked on moving forward now that the KS-SHCN team is fully staffed and will be aligned with the National Standards and the Kansas Systems of Care State Plan, so strategies, partnerships, and policies can be developed to overcome these challenges.
The KS-SHCN program has continued to provide quality services and supports for families on the program even during a staff shortage. Services include: HCC services for those who qualify with an eligible medical condition or receive SSI; for those who also meet financial eligibility they can choose Direct Assistance Programs (DAP’s) to assist with financial expenses; Special Bequest Funding for those who meet requirements; KS-SHCN Strategic Plan activities; staff workforce training (that included some staff reaching their CHW certification); transition tools and supports; peer supports; and family and consumer engagement efforts.
CSHCN Systems Alignment and Integration: Many factors contribute to the CSHCN population being an at-risk and vulnerable population such as inequities, disparities, social determinants of health, adverse childhood experiences (ACEs), and access to services including behavioral health and foster care. These factors are considered when looking at the holistic approach to care coordination services, however these services are only provided to those who meet KS-SHCN program criteria or the Bridges pilot criteria. For this reason, the CSHCN Director continues to build partnerships with internal and external partners to help address the needs of the special needs’ population in Kansas.
According to the National Survey for Children’s Health (NSCH) 2020-2021, data shows 20.7% of children have special health care needs based on the CSHCN screener. While 21.6% have one current or lifelong health condition, 20.1% have two or more current or lifelong health conditions. Additional data showed that 24.3% of Kansas children ages 3-17 year had one or more reported mental, emotional, developmental, or behavioral problem(s). Data indicate that CSHCN experience two or more ACEs at a much greater rate (35.3%), as compared to non-CSHCN (16.9%).
While the data subset for Kansas specific indicators is small at this time for special health care needs, the Title V Directors focused in, FY 2022, to expand the data sets for this population in subsequent years. Allowing a better view of Kansas’ strengths and weakness for the special health care needs population.
Collaboration across systems is vital to strengthening systems and supports for Kansans. Title V staff put great emphasis on working with local and state agencies to partner in a variety of ways to support the Title V population especially for children and youth who have special health care needs. Member of the FAC with children that have been involved with the behavior health and/or foster/adopt system have also promoted partnerships through connecting with the Kansas Department for Aging and Disability Services (KDADS) and the Kansas Division of Children and Families (DCF) state agencies to ensure the family voice is heard and that referral services can be better aligned to complement each other and provide supports to families while utilizing a family centered approach. While new partnerships are forged each year, ongoing partnership continue to be nurtured as well. Some examples of special health care needs partnerships:
Kansas Division of Children and Families (DCF): Title V Directors, members of the Family Advisory Council (FAC), Kansas Department for Aging and Disability Services (KDADS) and Kansas Division of Children and Families (DCF) partnered to strengthen the family centered approach by ensuring family voices are being heard and referrals to services are appropriate, timely and supportive of individual family needs. Meetings were held for FAC members to share their personal story with DCF on their experience with the system and gave concrete ideas and possible solutions to improve the system. Members of the DCF team were very responsive and appreciated the families sharing their lived experiences. While this was emotionally difficult for many of the families, they also expressed that it was very healing and rewarding to know that they were able to share and possibly improve services for others. One outcome of this interaction was that FAC members were called on to provide more information one-on-one with DCF staff and many were asked to participate on DCF councils or workgroups as they developed their next statewide plan. The Title V Directors were also asked to be part of the committee and workgroups to develop DCF’s Statewide Assessment. A collaboration meeting was held with DCF leadership and the CSHCN Director to talk about referrals to the SHCN program and other ways Title V could assist children in the system and the staff and foster families who support them. The CSHCN Director held a virtual statewide presentation on the SHCN program and the broader Title V CYSHCN work for all DCF contract workers and identified staff.
Kansas Department for Aging and Disability Services (KDADS): The Title V Directors routinely work with KDADS staff on a variety of projects. One effort was to survey waiver recipients on changes made to waivers due to the pandemic, also in collaboration with the University of Kansas (KU). A survey was developed by Title V based on waiver changes that occurred due to the COVID 19 pandemic and administered to families of waiver receipts. Survey results were then analyzed by the team at KU with feedback shared with KDADS and Medicaid. This led to a continuation or modification of services that had been implemented during the pandemic to assist families. Key finding from the analysis were the importance of coverage for telehealth services, paid family caregivers, and paid family specialty caregivers. Based on the findings the KU team, with input from the Title V Directors, submitted the finding in a manuscript to be published in the near future.
Kansas Council on Developmental Disabilities (KCDD): The CSHCN Director has been a consistent member and partner of the KCDD for many years. This has included being part of various sub workgroups. During fiscal year 2022, there was a change in the CSHCN Director position. The new CSHCN Director had substituted at the KCDD meetings and has worked with the KCDD staff in the past, so moving into this role on the council was seamless.
One project done in collaboration with the council was developing and holding a Supported Decision-Making (SDM) Summit for families who had transition age youth. Often, families do not know that there are alternatives to guardianship, so this summit was designed to assist families in understanding their options and what fits best for their adolescent and family. This summit was held in-person and streamed live with 67 participants in attendance. Post survey responses showed positive reviews with 85% of those who completed the survey stating that they would be able to apply what they learned during the summit and would recommend SDM summits/trainings to others in the future. The summit offered:
- An explanation of SDM and alternatives to guardianship that families can consider,
- The Life Course model and how it can be used for SDM,
- A panel consisting of a young adult who used SDM, his aid, and a leading expert on SDM.
Speakers for the summit consisted of individuals with special needs who had/or were currently using SDM for their transition into adulthood and other experts in the field of SDM. Plans have begun with partnership from KCDD, Kansas Department of Education (KSDE) and Title V for the next SDM summit that will focus on educators who support adolescents as they begin their transition journey.
Bureau of Health Promotion (BHP): Through collaboration with BHP, the direct linkage between the HCC work and Community Health Workers (CHW) activities was identified. CHW’s use a holistic approach very similar to the HCC work, so it was natural that a partnership between the two be forged. A component of this partnership allowed two SHCN Care Coordinator to participate in the new CHW certification training that has been developed free of charge. This has allowed SHCN staff to achieve certification status and identify possible gaps where further training may need to be developed. The Title V team is at the discussion table for various CHW activities and initiatives. A collaborative effort between BHP, United Health Ministries, Medicaid, and Title V has begun to get CHW service coverage through a possible State Plan Amendment. To work towards a State Plan Amendment, research has been conducted, a draft proposal has been written and includes CHW supervision requirements, code mapping, and training expectations. While there is still lots of work to go, it is the hope of the Title V team that this amendment will be approved so some components of the CHW work can be reimbursed.
Another collaboration with BHP is Title V’s involvement in a possible expansion of the CHW workforce to assist those on the Home and Community Based (HCBS) Intellectual Disabilities (IDD) Waiver wait list. The HCBS wait list for those with IDD is approximately 10 years in length. This leads to may barriers for children and their families in getting the services and supports they so desperately need. The possibility of using CHWs to assist families currently on the waitlist through getting approved for Medicaid, community resource linkages, system navigation assistance, and more, is being considered.
Screening and Surveillance Programs: Through partnership with the Screening and Surveillance programs within the Bureau of Family Health (BFH) the KS-SHCN program has refined its referral process to include not only the Newborn Screening Programs but the Birth Defect program as well. Families are referred from these programs to the KS-SHCN program who then follow up with families with a multifaceted approach to reach families, inform them of the program, and provide information on how to apply. An initial phone call was provided by a SHCN Care Coordinator to let a family know that there would be information mailed to them about the program and answer any questions they may have. However, it was determined that most calls were not being answered by families since they did not recognize the number calling them, so a new system was developed. This led to the use of secure tab postcards as part of the referral process. The first postcard lets them know that their child medically qualifies for the program and that a care coordinator would be calling in a few days to explain how the KS-SHCN program works. If no phone contact was made additional postcards and an application, follow. This data was tracked and monitored with a goal of a 5% increase annually based on completed applications submitted to the KS-SHCN program. Throughout the fiscal year, KS-SHCN program has recorded a total of 4 referrals from newborn screening, 6 through hearing aid screening, and 1 referral from birth defects, which are all programs housed under screening and surveillance.
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 (HCC): Kansas Title V utilizes 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 Bridges pilot, and all HCC expansion work noted in the cross-cutting section. Information about the standards is shared with partners across the state and assistance is provided to any partner or agency wanting to implement these standards within their practice. The Kansas Title V team has and will continues to participate in the National Care Coordination Standards work group as requested.
Work continued on the development and implementation of the Holistic Care Coordination Technical Assistance (HCC-TA) project with support from the KS-SHCN Care Coordinators. This project is designed to offer holistic care coordination (HCC) supports to providers across the state to help them establish, train and support HCC work in their practices. Read more about this in the cross-cutting report and plan.
The HCC work continues to be foundational within the Title V work. While originally developed for use by the KS-SHCN program, the long-term vision was to spread and scale to other providers across the state and within other Bureau of Family Health programs. The KS-SHCN program continues to use the HCC approach with all clients on the program who meet medical or SSI qualification standards. As part of the HCC work, a new referral process has been under development that will expand HCC work to a wider population of children with special needs. This new process includes a SHCN screener to help identify more children who might qualify for HCC services and will be used with a variety of partners to determine who should be referred for HCC services.
Bridges Care Coordination Pilot: The Bridges Pilot program was designed to support children and families as they are transitioning out of the Kansas Early Childhood Developmental Services (KECDS, formally called Infant Toddler Services) upon the child’s third birthday and into the Early Childhood Special Education (ECSE) services or community services. This is a time that many families have expressed a feeling of being overwhelmed in knowing how to navigate the systems of care for their child. Bridges was designed to help fill that challenge by providing holistic care coordination services to provide a smooth and stress-free experience for the child and their family. This process begins prior to the child’s third birthday. The local KECDS staff share information about the Bridges program with families and assist them in completing a simple application. The KECDS staff then send that application to their local Bridges Care Coordinator and invite them to the next appointment/meeting with the child and family for a warm handoff.
Upon receipt of the application the Bridges Care Coordinator (BCC) then enters the child’s information into the data system and sends the family a welcome letter. Once the warm hand off meeting occurs the BCC begins working with that family directly, following Kansas Title V Holistic Care Coordination (HCC) model. This model is designed to be strength based, family and child centered, meet the family where they are and uses a holistic approach (medical - physical and mental, education, social, financial, and legal) that looks at all aspects of the child and family's life. Working together, the BCC and family determine the strengths and needs of the child and family to develop an Action Plan to use as a guide while navigating the systems. BCCs provide ongoing support, referrals, and assistance as needed while helping the families learn how to independently navigate the complex systems of care successfully.
Once training was completed by all BCCs and KECDS partnerships were established, the referral process began in April of 2021. The pilot population consisted of children/families within various locations in Kansas (frontier, rural and urban) and in both English and Spanish. Monthly surveys were distributed to both BCCs and KECDS via SurveyMonkey to gather data and feedback on what was working and what changes needed to be made. Feedback included: minor changes to the application (adding KECDS staff’s phone/email information), possible refinement of referral process (currently under consideration), development of check in postcards, and modification to support better data reporting within the current EHR system.
During FY 2022, the Bridges program was challenged in expansion due to the COVID 19 pandemic and staff shortages within KECDS and Special Health Care Needs internal and satellite offices. While the pilot originally had five pilot sites, one site discontinued services, leaving only four sites. However, two new sites were recruited to become Bridges providers for 2023. The pilot currently has 30 plus children/families with one family whose primary language is Spanish. Additional funding sources and staffing options are being investigated to be able to move Bridges out of a pilot project into a fully sustainable program. With the long-term goal of offering this to all families across that state who have children exiting the KECDS program.
Systems Navigation Training for Families (SNTF): Due to the COVID 19 pandemic, the Systems Navigation Trainings for Families were put on hold since these are an in-person event. There was consideration around developing a virtual version however, because many of the activities require interaction between participants to make a strong impression, especially when sharing their personal stories and connecting with others, it was decided to focus on the train the trainer model and development of a Spanish version.
During FY 2022 the KS-SHCN team had a 50% turn over in staff, making it a challenge to move this work forward. Work resumed at the end of the fiscal year with two new trainings being scheduled for winter of 2023. The train the trainer model was refined along with a review and update of the training materials and tools. A trainer recruitment application and evaluation review process are under development and will be used to increase the number of trainers across the state. Development of a Spanish training curriculum was put on hold due to staff shortages, but there are still plans to resume when able.
Other KS-SHCN Initiatives
Peer Supports for CSHCN: The KS-SHCN program continues to be part of the Supporting You (SY) Network with a focus on families who have loved ones with special needs. SY provides one-on-one peer support from a parent/caregiver with similar life experiences as the person requesting the support. The program originally only focused on families who met the medical criteria for the KS-SHCN program but changed that in FY 22 to include all special health care needs conditions and disabilities. Recruitment for Connected and Supporting Peers is ongoing with the Peer Support Administrator providing guidance and support to them as they enroll in the SY Network. The Peer Support Administrator and CSHCN Director work collaboratively to increase awareness of the SY Network to both families and providers. More information on SY can be found in the Cross-Cutting Domain.
Care Coordinator Training and Workforce Development: The KS-SHCN program offered a series of webinar trainings to Satellite Office staff in the Winter of 2022 to help them reestablish the protocols and procedures required by the KS-SHCN program to be a Satellite Office. Many Satellite Office were struggling to keep up with clients during the COVID-19 pandemic causing some to discontinue services and others that requested more assistance to meet their client's needs. This led to many clients being assisted by the main office staff in Topeka instead of in their local communities. Once things slowed down with the pandemic Satellite Office team members were excited to get back to their SHCN work. A one-day training was held in Topeka in July 2022 to provide additional trainings and support to Satellite Offices based on request from the Satellite Office staff and identified needs shared by the Topeka team including the Lead Care Coordinator. The main topics included information on: outreach and promotion, programming basics, the Direct Assistance Programs, the data collection tool, and program updates.
The CSHCN Director oversees a contract with the Leadership Education in Neurodevelopmental Disabilities (LEND) program to provide trainings and support to childcare providers around a variety of disabilities. Often childcare providers do not have the knowledge and skills to feel confident in providing services to children with special health care needs or disabilities making it more difficult for families to find quality childcare. Through this contract, now in its second year, the LEND staff have provided over 25 webinars and trained over 3,000 childcare providers ranging from potty training, social skills, specific conditions like ASD, to behavior management techniques and skills. Through this contract a Developmental Disability Certification Program for childcare providers began during the reporting period and will be completed in FY 2023. This certification increases childcare provider knowledge and skill while increasing the number of providers comfortable and willing to accept children with special needs into the childcare setting.
Program Policy & Service Delivery Changes: Program policy and services are reviewed annually by the KS-SHCN team and CSHCN Director to identify any changes to the health care industry, program, and community needs. Changes are then made and monitored using quality improvement or quality assurance tools to make sure they are having the effect as intended. No major changes to the KS-SHCN program were noted during this reporting period.
There were no changes to Satellite Office during this reporting year. One Satellite Office is being closely monitored to ensure policies and procedures as agreed upon in their SHCN agreement are followed. If this Satellite Office is unable to improve their services as specified in their contract, they will no longer be a Satellite Office. Additional Satellite Office are being recruited in needed areas of the state where there is not local coverage. There is an increased need in many regions of the state for Spanish speaking Satellite Office staff. These areas of the state are currently being serviced by the Topeka SHCN team. All clients are getting quality services and supports but being able to receive them in their location would be beneficial since local providers know the resources in their area best.
Updates to the KS-SHCN data system are needed, but due to KS-SHCN staffing capacity and the merging of the current data provider with another company, this has been a challenge to accomplish. There is a need to develop reliable reports within the data system that can easily be pulled and monitored.
Policies and services have had to be modified regularly due to the formula shortage that has been affecting the clients with PKU and others who need specialized formula. This has been an ongoing issue for most of the last 2 years. One month of emergency supplies were issued to every client when the pandemic first occurred, but as supplies continue to be difficult to get, the process has become time intensive and stressful for both families and staff. Changes to client's regular formula orders have had to be adjusted by the nutritionist based on what formula is available at that time. Even then supply amounts are limited so ordering has to occur more frequently leading to more staff time required. Many times, the formulas that are available are higher cost, so requires careful monitoring of the KS-SHCN budget. The program staff will continue working closely with the formula companies, families, and nutritionists to make sure the client's needs are being met.
With the unwinding of Medicaid due to the Public Health Emergency (PHE) lifting, the KS-SHCN team has been communicating with families regularly to prepare them for this occurrence. They are making sure that families have updated information listed with the KS-SHCN program and with Medicaid. They are encouraging families to have their Medicaid applications completed and ready to be submitted when the PHE is lifted.
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