PRIORITY: Services are comprehensive and coordinated across systems and providers
 

NPM 11: Medical home (Percent of children with and without special health care needs having a medical home)

 

 

 

The Title V program, within the Bureau of Family Health, has authority and provides guidance for services for children with special health care needs (CSHCN). Pursuant to Kansas Statute (K.S.A. 65-5a01, et seq), the program must meet certain expectations to provide medical treatment services to families with defined and limited diagnoses and disabilities. However, it should be noted that programmatic activities align with Title V requirements, recommendations, and guidance to engage as a key stakeholder and catalyst for improving systems of care for all CSHCN. The vision in Kansas spans far beyond the state mandate for services and aims to assess and address needs of all CSHCN through quality improvement and evaluation to advance sustainable and systemic changes.

 

The Kansas Special Health Care Needs program (KS-SHCN) provides specialized medical services to infants, children and youth up to age 21 who have eligible medical conditions and persons of all ages with metabolic or genetic conditions screened through the newborn screen. The program assures that medical specialty services are accessible through external partnerships and contracts to provide diagnostic evaluations and treatment services, care coordination, financial assistance, and support to approximately 2,100 individuals with special health care needs and their families. Additional information about the program, including the eligible medical conditions (per KS Statute), is available on the website and throughout this report. https://www.kdheks.gov/shcn/index.htm

 

KS-SHCN Program Brochure, Page 2

 

The term “children with special health care needs” (CSHCN) will be utilized to refer to the general population as defined by Title V, as compared to the population served directly through KS-SHCN as determined by program eligibility.

 

Aligned and expanded from the 2020 Title V Needs Assessment and State Action Plan (SAP), the KS-SHCN Action Plan is currently in implementation year 5 of 5. This report reflects accomplishments during year 4. The full KS-SHCN Action Plan can be found as Appendix A of the State Plan for Systems of Care for CSHCN. As a critical component to the work of the program, KS-SHCN priorities and strategies are assessed each year by the Family Advisory Council (FAC) to monitor progress and make recommendations as needed.

 

Families continue to express the need for ongoing assistance with non-medical needs that support families in meeting their most critical health concerns. The program regularly reviews funding and support for direct services, including multi-disciplinary clinics, and makes modifications as needed.

 

KS-SHCN Infrastructure and Program Activities/Services

 

The KS-SHCN Action Plan objectives and strategies complement the Title V SAP, with many of the KS-SHCN priorities and strategies integrated across several of the domains. This reflects the integrated and cross-systems approach to the Kansas work. While the medical home continues to be a central focus of the KS-SHCN program, the new priorities address broader needs of the child and their family and focus on stronger collaboration and integration across systems of care. It is important to understand the structure and function of the KS-SHCN program to fully realize the full impact and infrastructure that contributes to the overall system of care for CSHCN and their families.
 

KS-SHCN Workforce: KS-SHCN regularly assesses the workforce and service delivery needs of the families served through the program. Satellite offices (SO) are established across the state through local health agencies and one area children’s center that provide broader MCH services through the MCH Aid to Local (ATL) program. Each year, a review of KS-SHCN program data is conducted to assess the need for SO staffing, placement, and coverage. As a result, it is not uncommon to realign the SO service areas and in SFY2019, the program supported ten (10) SOs. These were reduced to eight (8) in SFY2020. As the number of SO’s shift, geographic lines for the regions are adjusted to assure all Kansas counties are covered. This continues to be assessed yearly and adjusted as needed dependent on client enrollment and level of care coordination needs identified.

 

The KS-SHCN workforce consisted of a total of 26 individuals, with 5 full-time positions, and the remaining staff (SO) working an average of 10 hours or less per week. Many of the SO staff also work on other Title V programs and because of the KS-SHCN integration with the MCH ATL process, local health agencies have the opportunity to learn more about services available for the CSHCN population and the need for MCH services and supports. These efforts help increase understanding that CSHCN are children first and need the same services and supports as non-CSHCN children, while gaining awareness and appreciation for the specialized needs or challenges of the CSHCN population.

 

Workforce Credentials	SFY2019	SFY2020
Registered Nurses	14	10
Social Workers	4	4
Other	14	12
Total	32	26

 

In addition to training and support provided through the MCH ATL network, SO staff receive technical assistance and training from KS-SHCN through bi-monthly webinars or “Brain Trust” calls, site visits, and an annual in-person training.

 

The first KS-SHCN staff retreat was held in SFY2019 for those working in the Topeka office, providing opportunity for staff to engage in program evaluation activities, including review of program data and national/state performance measures. During the retreat, staff focused on review of the alignment across the Title V and KS-SHCN Action Plans and developing strategies to be accomplished in the coming year. Annual review of the direct assistance programs (DAP’s), care coordination services, Special Bequest, SO trainings and supports, data system enhancements, program promotion strategies, and budget were also completed that day. Personal and program goals from each team member were shared with the program manager to identify ways to better support their individual growth and system knowledge. Staff response to the retreat was positive and indicates a desire to make this an annual event. Key outcomes from the retreat:

• Changes to Direct Assistance Programs (DAPs)
• Special Bequest modification
• Cross-training for all staff over the next year
• Ideas for Title V Needs Assessment process
• Updates to the KS-SHCN Action Plan
• Individual NPM input
• Alignment of shared visions for program and staff roles

 

Direct Assistance Programs (DAPs): KS-SHCN provides financial assistance for direct services for families through DAPs (full list of DAPs available in the Overview of the State Section).

 

Staff monitor and review DAP utilization data annually to determine if any changes need to be made prior to the next program year. Changes may be based on actual or anticipated increases due to changes within the insurance industry, Medicaid/KanCare, and shifts in coverage for CSHCN services. In SFY2019, a change to the Metabolic Products DAP policy resulted in allowing clients up to $1,000 per month (an increase from the standard amount of $750) by submitting a letter from their provider providing rationale for the need (e.g., specific high cost formula). Additional changes included increasing funding amounts for the Travel DAP (DAP-T), allowing families to utilize the Co-Payment/Deductible/Co-Insurance (DAP-C/D/CI) twice in the same 12-month timeframe for assistance with out-pocket-costs associated with a high insurance deductible.

 

Effective July 1, 2019, KS-SHCN added a new DAP–Caregiver Relief (DAP-CR). DAP-CR allows families who have medically complex children to hire, set pay, train, and monitor care providers for their child. Care providers must be over the age of 18, have a valid drivers license and be certified in CPR and First Aid. This provides families the opportunity to address unique needs such as doctor’s appointments, mental health breaks, or other family member needs.

 

Since the inception of the DAPs, the program is more effective and efficient at providing services to clients, monitoring expenses, identifying gaps/barriers in service authorizations, and ensuring greater fiscal responsibility. With the DAPs in place, the program has prevented the need for waiting lists and decreasing services due to a lack of funds by only authorizing services as needed and setting limits per annual authorization. This change has resulted in better accountability and an ability to identify when funds are running low and cease authorizations for that DAP, if needed, until funds are released.

 

KS-SHCN Enhanced Data System: Work on the new Welligent data system (launched in 2018) continued in 2019 to ensure make sure all components of the system work efficiently. Additional enhancements continued to be developed to better assist staff in tracking all care coordination activities and reporting quality data. The Welligent system includes components needed for care coordination services such as: client demographics, applications, supporting documentation, financial calculation, authorizations, action plans, budget (client and program), DAPs, correspondence, clinic information, follow up reminders for Care Coordinators, and more. The system continues to be enhanced and refined to meet all program specifications. Staff participate in monthly training webinars to support proficiency with the system. Data is reviewed regularly to identify areas for improvement. Welligent improvement activities are expected to be an ongoing activity to meet program changes as they occur. Staff report the new system has allowed for improved and timely services for clients and a better coordination in workflow for the KS-SHCN care coordination staff.

 

Aid-To-Local (ATL) Funding Process: KS-SHCN provided an opportunity for community partners to apply for funding through an online application and reporting system, Kansas Grant Management System (KGMS). Applicants were provided the KS-SHCN key priorities and objectives and asked to share the “problem” or “community need” they can best impact, as related to the plan. For each objective addressed by the applicant strategies or activities were to be described to implement to address the need(s) identified, anticipated health outcomes, and long-term sustainability plans. A review team was developed to review all applications consisting of the Title V CSHCN Director, KS-SHCN Program Manager, SHS program leads, KS-SHCN Topeka team, and FAC members. Each proposal was evaluated by at least four members of the review team, including one family reviewer. Reviewers were provided webinar trainings on the review process, timeline, and reviewer expectations.

 

All reviewers were provided a scoring rubric which can be found in the SHCN supplement document, with their assigned ATL application(s) and deadline for completion. Responses from the scoring rubric are compiled, calculated and comments noted prior to internal review by program staff. Internal reviewers discuss each proposal and make one of the following recommendations: do not fund, fund with conditions, or fund as written. In FY2019, the KS-SHCN program awarded seven grants. A summary follows.

 

 

Throughout the reporting year, the KS-SHCN Program Manager and Grants Coordinator met with each partner twice (fall and spring) to monitor progress on funded projects and to build stronger collaborative relationship. During these in-person meetings, program updates, grantee project progress, technical assistance needs, and next steps were discussed. The program worked with grantees to identify additional collaboration opportunities to meet the needs of the CSHCN population. Outcomes of these discussions led to the following changes:

• The KS-SHCN Care Coordination model piloted within the CP/MC clinic for FY2019, with plans to continue in FY2020.
• During FY2019, a KS-SHCN Care Coordinator, who specializes in PKU, began attending the Wichita PKU clinic regularly to work directly with clients on their Action Plans.
• The KS-SHCN Program Manager and Title V Adolescent Health Consultant were invited to participate in the Faces of Change youth leadership training session. Additionally, the Title V CSHCN Director attended the Fall 2018 Faces of Change Graduation Ceremony.

 

Grantees were required to submit quarterly reports and the KS-SHCN Program Manager provided written feedback to build better partnerships. Upon request of the Title V FAC, the program created a SFY2019 Special Health Care Needs Program Annual Report that highlights funding, objectives and outcomes, and key accomplishments of each grant initiative. The Annual Report financial summary below outlines activities and outcomes from some of the program grantees.

 

 

Wheelchair Seating Services: The Cerebral Palsy Research Foundation (CPRF) Wheelchair Seating Clinics provide critical wheelchair/posture-seating services in Wichita and satellite outreach clinics. To assure the quality standards of its program, CPRF focuses on three means of feedback: family satisfaction surveys (following each clinical visit and longer-term assessment of clinic services); process measures; and long-standing collaborative partnerships (e.g., medical professionals, nonprofit disability services providers, durable medical equipment providers, public school districts, and the Wichita State University College of Engineering). Key data from the CPRF efforts are outlined below.

 

 

Population Health and CSHCN: In April 2019, the Kansas Maternal Child Health Council (KMCHC) meeting focused on developing a deeper understanding of the CSHCN population and work surrounding alignment and integration among other Title V MCH activities. KMCHC members received an overview of the Title V and KS statutorily-defined populations, a review of the federal CSHCN population health technical report, and the Kansas Title V vision for CSHCN within the context of population health. Case studies were presented to the group to discuss service navigation, referral to services, or other supports. Each KMCHC domain work group received additional details from facilitators, customized to each MCH population domain and aligned with the Title V State Action Plan priorities, objectives, and strategies. Each group was challenged to think differently about their work and how MCH services are provided, considering potential accommodations needed for individuals or families of CSHCN. A copy of the agenda and meeting materials can be accessed on the Kansas MCH website: http://www.kansasmch.org/pastmeetings.asp.

 

KS-SHCN and Medicaid Partnership: The KS-SHCN program has built a strong partnership with Medicaid and the Managed Care Organizations (MCOs) to support a holistic approach to care coordination. The program shares a monthly report with each MCO to identify dually enrolled clients MCO case managers and KS-SHCN Care Coordinators can work collaboratively to provide quality services for the clients without duplication of effort or service. The Care Coordinators work with the clients to assist with filling any gaps not addressed by the MCO‘s (e.g., appointment scheduling, filling prescriptions, effectively communicating with providers). The partnership between the MCO Case Managers and the KS-SHCN Care Coordinators has helped maximize resources and provide quality services for CSHCN.

 

The KS-SHCN Program, upon request, presents information about the program to the MCO case managers to further improve collaboration. During SFY2019, the KS-SHCN Program Manager presented an overview to MCO staff to strengthen and grow the partnership. The program continues to collaborate with the assigned State Medicaid liaison to assure services are not duplicated and identify gaps or barriers that could be addressed between the two programs to improve services for CSHCN. This partnership continues to grow each year with improved outcomes for children. Improvements in services from both programs have been identified, including but not limited to a decrease in client denials for services, reduced wait times related to the appeal and approval process, and development of a single case agreement.

 

 

NPM 11: Medical Home (Percent of children with special health care needs having a medical home)

 

The 2017-2018 National Survey of Children’s Health (2 years combined) showed the care received by 51.9% of Kansas children under the age of 18 met medical home criteria. Both children with special health care needs (52.3%, 95% Confidence Interval [CI], 42.7% - 61.8%) and children without special health care needs (51.9%, 95% Confidence Interval [CI], 47.1% - 56.6%) received services through a medical home at a comparable rate. Receipt of care from a medical home varied by age, race/ethnicity, and primary household language. Children aged 0–5 years (51.6%) and 6-11 years (53.3%) were slightly more likely to have a medical home than children aged 12–17 years (50.6%). Hispanic children (37.5%) were less likely to have a medical home than non-Hispanic white children (55.1%). Children living in a household with English as the primary language were more likely to have a medical home than children living in a household with a primary language other than English (52.6% and34.4 %, respectively). Children living in a household with two parents (currently married) were more likely to have a medical home than those with two parents (not currently married), those with only a mother or father, and those with all other family structures (56.3% compared to 48.2%, and 35.4%, respectively). Medical home access also varied by socioeconomic status. Receipt of care in a medical home also increased with household income: 38.9% of children living in households with incomes less than 200% of poverty had a medical home compared to 63.9% of children living in households with incomes of 400% or more of poverty. The difference was significant.

 

The medical home, a foundational concept for building stronger systems of care for CSHCN in the state drives the work of the KS-SHCN program. The KS-SHCN Holistic Care Coordination model is designed to support each of the seven components of the medical home in some way (depicted in the graphics that follow). As a foundational concept for building stronger systems of care for CSHCN in our state, the Family Advisory Council (FAC) continues to provide input and expertise to assure an ongoing focus on coordinated and holistic approach to providing services in Kansas. The infographics that follow outline how the KS-SHCN Program serves families under the medical home framework. The FAC provided significant input and expertise in developing the new direction of the KS-SHCN program, therefore the new priorities expand beyond the medical home approach and focus on an even more coordinated and holistic approach to providing services.

 

 

To assist in increasing children with special health care needs ability to access a medical home, the KS-SHCN program partnered with a developmental pediatrician, the staff at the Cerebral Palsy/Medically Complex clinic in Wichita, a Palliative Care Social Worker/parent of a child with special health care needs, a leader in the Early Childhood Collaborative Systems (ECCS) work, and the University of Kansas Project ECHO team to provide a 4-part learning series for providers across the state. The series, titled Beyond the Developmental Screen, focused on the importance of screening, frequency, tools, referral sources if the child flags for developmental delays, how to communicate with families about possible delays, who/where to go for a diagnosis, and more. More about this training can be found in the Child Report. The pediatrician is funded through a contract with KS-SHCN program and available upon request via telemedicine to support providers conducting developmental evaluations.

 

Objective: Increase family satisfaction with the communication among their child’s doctors and other health providers to 75% by 2020.

 

Family satisfaction with communication amongst their child’s health providers continues to be a priority for the KS-SHCN care coordination staff. Families are assisted with communicating their hopes, dreams and concerns for their child with providers and advocating for provider cross-communication, reducing duplication of treatment and improving services. KS-SHCN Care Coordinators assist the family in identifying what information they need/want to share with their child’s provider and what questions they want to ask the provider to have a better understanding of their child’s medical needs. By helping families prepare prior to appointment, parents/caregivers can assist the medical providers in understanding their child’s needs, so they can collaboratively develop the best plan possible for the child. By identifying questions prior to the appointment, families leave appointments with more clarity about treatment, services and next steps in their child’s care. Giving families these supports help them feel empowered in their ability to navigate the systems of care independently in the future. A case example of this is shared below:

 

 

Family Care Coordination Training: The Family Care Coordination Training (FCCT) is designed to assist parents/caregivers in increasing their knowledge of medical homes, Shared Plan of Care (SPoC), transition, community services and supports, obtaining insurance coverage, advocacy, self-care, and to develop skills to better partner with their child’s providers. As the trainers are parents of a special needs child themselves, the trainings begin with the staff sharing their personal story to help families feel comfortable sharing hopes, dreams, and daily struggles of being a parent of a child with special health care needs. Participant response to the program has been favorable. Participants complete a pre/posttest and one-year evaluation, providing information that can be used to improve the training experience. Clients are encouraged to attend these training to assist them in preparing for their transition to adulthood.

 

Understanding the importance of these trainings, the KS-SHCN Program Manager focused on developing a “train-the trainer” model through the reporting period. Along with a KS-SHCN staff member the FAC members who have children with special health care needs have been asked to complete the training. This model is also being developed in Spanish.

 

Local MCH/SO Agency Strategies: Two KS-SHCN satellite offices (Pittsburg and Hays) continue to participate in the Help Me Grow (HMG) initiative in their local communities. By partnering in this work, they will continue to improve services and supports for infants and children through early identification and timely referrals. As early childhood work continues to grow in Kansas and the HMG framework is utilized in other communities, all satellite offices will eventually be in communities working to implement the framework.

 

Saline County Health Department Satellite Office has continued to provide outreach and care coordination option to families through Telehealth. The KS-SHCN Care Coordinator is trained in the use of the telehealth equipment and offers these services to the clients/families she works with. The telehealth equipment was provided a couple of years ago through funding from the KS-SHCN program.

 

Objective: Increase the proportion of families who receive care coordination supports through cross-system collaboration by 25% by 2020.

 

Holistic Care Coordination: The KS-SHCN Holistic Care Coordination (HCC) program assists clients and their families in navigating health care and other systems to meet their or their child’s needs. The goal of HCC is to empower individuals to feel confident in navigating services and supports for themselves or their child while having a consistent person available to them for assistance, support, and understanding as they meet their goals. Care coordination is offered free to any individual and their family who has a special health care need or disability who qualify for the KS-SHCN program.

 

Clients and families have individual needs and require services and supports tailored to meet those needs. Care Coordinators work with families to identify needs and wants and develop an action plan when applicable to help them achieve positive goals while providing the desired level of support. Care Coordinators partner with families in finding and accessing needed services and resources across medical, education, and community systems. They work with the family to assure the child is receiving the services needed to achieve optimal health outcomes. Families are educated on the various systems and how each function to effectively and independently navigate these systems in the future.

 

As part of care coordination services clients/families are supported in working collaboratively with their doctors and other service provider to best meet the client’s needs using a holistic approach. Providers have access to the client’s Care Coordinator for support and assistance, when needed and approved by families, to support the best possible health outcomes for the client. Families are reminded about the need for their child’s yearly EPSDT (KanBeHealthy) appointment and assisted in scheduling the appointment if necessary. This is monitored as part of the client’s Action Plan. If a client is uninsured the client/family is assisted in identifying and applying for insurance to best meet their needs. For youth (14 and older) transition activities are included in their action plan. Youth are encouraged to work collaboratively with their parent/caregiver and the Care Coordinator to develop and follow their action plan. Care Coordinators work with the youth to help them identify where they are in the transition process and assist them in developing action plan goals to address transition activities to prepare them in learning how to navigate the systems of care. All client needs are addressed in a holistic way within their individual action plan.

 

This is a voluntary program and all individuals have the option of opting out or back in at any time. The informational flyer for the approach is below.

Levels of Care Coordination: To support the provision of supports and education to clients and families, the KS-SHCN Care Coordinators provide HCC through three defined “levels” of care coordination, outlined below:

 

Once the client receives the initial Care Coordination Assessment (CCA), they are identified to need HCC services at one of these levels. In partnership with the family and other members of the care team, the KS-SHCN Care Coordinators determine the appropriate methods of and intervals for communication and coordination, as well as assessments of progress and outcomes. In SFY19, 110 clients received care coordination services (an increase from 54 in SFY18). Data for SFY19 is not yet available, however data from SFY18 indicates the HCC model is successful. Of the 54 clients served, 35% were at level 1 (lowest level of coordination needed). The remaining were at a Level 2 or 3 (of which 70% showed improvements and moved from a more intensive level of HCC to a less intensive level. The remaining 30% maintained their current level.

 

Care Coordination Through Satellite Offices (SOs): The SOs serve as the entry-point into the KS-SHCN program, working directly with families throughout the application process, assisting them with applications, and answering questions. They also share information about the KS-SHCN program with families, community organizations and providers in their region to help increase the number of clients on the program.

 

Staff at each SO provide basic services at the local level and their key responsibilities include monitoring client status, communicating needs to families, managing client records, conducting follow-up appointments with families regularly in accordance with the Action Plan, and providing additional supports and services determined by the family. All SO staff receive bi-monthly technical assistance trainings from the Topeka team, site visits, and an annual in-person SO trainings. In SFY2019, all SO’s provided holistic care coordination services with support from the Topeka office for KS-SHCN. This allows the program to concentrate on expanding our service delivery models and fostering new partnerships. Plans began in SFY 2019 to expand the KS-SHCN Care Coordination model to the Lifting Young Families to Excellence (LYFTE) program. For detail information on this project please refer to the Adolescent health section.

 

Care Coordination Through Clinical Models: A partnership with the Community Health Center for Southeast Kansas (CHC-SEK) provided opportunity for the KS-SHCN HCC model to be piloted within a federally qualified health center (FQHC). CHC-SEK is the largest provider of pediatric services in rural southeast Kansas, serving more than 16,000 children annually. A dedicated full-time Special Needs Care Coordinator serves low-income CSHCN throughout the region. CHC-SEK worked with 148 families during the SFY2019 contract to connect them with resources, including the KS-SCHN program, and ensure children had an established culturally competent primary medical, dental and, if needed, behavioral health home. Special Needs Care Coordinators assisted families in navigating access to services and resources based on eligibility. A total of 154 office visits, 196 telephone encounters, 24 school visits, and 41 specialty behavioral health telehealth visits were provided.

 

With most of this region critically underserved, limited public transportation, aging medical and dental community, and declining number of providers accepting Medicaid, gaps in service delivery are steadily increasing. Many of the families of these children struggle to meet basic needs, let alone adequately provide all the resources that would benefit and improve the quality of life of their child and their family. Through care coordination and assisting families in navigating the ever-increasing complexities of the healthcare system, disparities in the care to low-income children with special needs will be reduced and, in many cases eliminated. Below is a chart showing the number of SPoCs provided by the CHC-SEK in SFY 2019.

 

A stronger partnership began January 2019 with the Cerebral Palsy/Medically Complex (CP/MC) Clinic in Wichita to provide care coordination services in line with the KS-SHCN model. This clinic has been supported by the KS-SHCN program for many years. With this improved partnership, better collaboration occurs frequently, leading to better service outcomes for those clients who attend clinic. In this collaborative partnership, the Topeka office processes the applications, does the initial care coordination assessment, and, if the client attends clinic, assigns the client to the proper clinic staff for care coordination services and provides ongoing technical assistance support to the CP/MC clinic staff, as needed. The clinic Care Coordinator also participated in all Satellite office (SO) trainings and shared information during the in-person training, with all SO staff about the clinic and how to connect clients with them.

 

Below is an excerpt from the KS-SHCN ATL Contract SFY19 Annual Report regarding the accomplishments of the CP/MC clinic.

 

 

 

Families as Care Coordinators: To fill a gap in care coordination services in the south-central region of the state, a contract was established with a FAC member in 2018 to provide KS-SHCN HCC services to clients in that area. The KS-SHCN Program Manager and Lead Care Coordinator provided trainings on the KS-SHCN model and continue to provide technical assistance as needed. The contractor has a child with special needs and understands the importance of clients and families learning how to navigate the systems of care as well as how that can be achieved through care coordination methods. The contractor will complete the FCCT training in 2020 and will begin assisting the KS-SHCN Program Manager in conducting the trainings across the state in the coming year. Read more about the partnership with this family leader in the CSHCN Plan narrative.

 

Objective: Develop an outreach plan to engage partners, providers, and families in the utilization of a shared resource to empower, equip, and assist families to navigate systems for optimal health outcomes by 2020.

 

KS-SHCN continues to identify opportunities to align with the MCH programs and services across the state. A huge part of this includes a shared message that “children with special health care needs are children first” and that infants, children, and adolescents served through MCH services may also have a special health care need, even if not connected to the KS-SHCN program or served by a specialty clinic. Therefore, efforts to educate MCH staff and grantees and align KS-SHCN and MCH services continued to be a focus over the past year.

 

Cross-System Coordination: The KS-SHCN program continues to be engaged with the Kansas Help Me Grow (HMG) work (described in further detail in the Child Report/Plan narratives). The HMG model provides opportunity to coordinate across service delivery systems and engage providers in supporting the needs of families of CSHCN. The KS-SHCN Program Manager provided training to Parent Helpline (1-800-CHILDREN) volunteers, as part of the HMG Centralized Access Point (CAP) effort, to equip them to provide resources for the CSHCN population. The HMG framework, as aligned with the medical home framework described earlier in this section, is a positive step towards improving services and supports for CSHCN. Read more about cross-system coordination plans in the CSHCN Plan narrative.

 

Expansion in program partnerships through the past year has been a focus in order to strengthen the services and supports provided to KS-SHCN clients. Key partnerships include:

• Foster Care Services – Discussions focused on respite care offered to foster families and ways the KS-SHCN program can align the Caregiver Relief Direct Assistance Program (DAP-CR) without duplicating efforts. This led to development of a new KS-SHCN policy, so children in foster care could also utilize this DAP leading to better support for children with SHCN who are in the foster system.
• National Alliance of Mental Illness (NAMI) – Exchange of information across programs took place to increase support for clients who have mental illness. Many KS-SHCN program clients not only have a qualifying medical condition, but many have a secondary condition of mental illness that Care Coordinators must address. A local SO offered a NAMI presentation during a training webinar to increase staff understanding of the services that NAMI provides and how they can support dual clients and their families.

 

KS-SHCN staff attended the Kansas Academy of Family Physicians (KAFP) conference to network with physicians from across the state, share information about program services, and recruit physicians to serve as KS-SHCN providers.

 

Bureau Partnerships: KS-SHCN works closely with staff from the Newborn Screening (genetic/metabolic, hearing, and heart), Infant-Toddler (Part C) and the Birth Defects programs. Infants identified through the newborn screening programs medically qualify for KS-SHCN services; therefore, a referral process has been developed to ensure families are introduced to the KS-SHCN program. Not all children who qualify for Infant-Toddler Services or identified by the Birth Defects program will qualify for the KS-SHCN program, however these programs are working to develop referral protocols and messaging to support increased referrals to KS-SHCN. To better support the referral process, a Decision Schema was developed and shared with other BFH and Title V MCH programs and partners.

 

The KS-SHCN Program Manager participated in the NBS Spinal Muscular Atrophy (SMA) sub-committee calls to identify and monitor steps related to adding SMA as a new condition to the Kansas Newborn Screening core panel. By understanding and monitoring the pilot process and learning about the recommended treatment options, the KS-SHCN program is aligned to add this diagnosis to the list of conditions covered by the program for services and supports upon the “go-live” date (early 2020).

 

To improve communication between SOs and grantees, the KS-SHCN program developed an electronic newsletter (viewable online at https://bit.ly/2NrZNVy) distributing the first edition in October 2019 to all SO staff and partners. The newsletter contains the following sections:

• Care Coordination Corner: information, tips and resources for HCC activities shared by the Lead Care Coordinator
• Satellite Office Spotlight: highlights of one of the local SO services provided, with a message from the SO Care Coordinator
• Calendar of Events: upcoming training and technical assistance offerings, as well as special awareness dates relevant to the CSHCN population
• ATL Partner Spotlight: highlights of one of the ATL partners with services provided
• HCC Success Story: stories from families or Care Coordinators about KS-SHCN services and supports
• Welligent Wisdom: tips and tricks on utilizing the KS-SHCN Welligent data system
• FAQ’s: highlights the top technical assistance questions received by SOs

 

Supporting You: The KS-SHCN program assisted in the development of the Supporting You peer to peer network and launched their own network program in December 2018, opening the system for enrollment of Support Peers. More information about Supporting You can be found in the Cross-Cutting Report and Plan narratives.