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 Kansas Special Health Care Needs (KS-SHCN) 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 KS-SHCN program provides services to children and youth birth to age 21 with eligible medical conditions. The program provides care coordination and financial assistance and support to approximately 1,304 individuals with special health care needs and their families. Numbers decreased in the third and fourth quarters of 2020, due to the COVID-19 pandemic, as families were fearful of taking their child into clinical settings, unless absolutely necessary. Additionally, the program assures that medical specialty services are accessible through external partnerships and contracts to provide diagnostic evaluations and treatment services. Additional information about the program, including the eligible medical conditions (per KS Statute), is available on the website. 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 has just concluded implementation of year 5. However, the KS-SHCN Action Plan will remain active as some tasks have not fully been completed and others such as Holistic Care Coordination, will be undergoing expansion in the next few years. This report reflects accomplishments during year 5. 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 both medical and 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. One such change in the past year includes coverage for those with metabolic or genetic conditions screened through the newborn screen. While historically the program has covered persons of all ages with these conditions, the program made the difficult decision to change the eligibility criteria for these conditions to match the same age eligibility as others on the program. This means that as of October 1, 2020 the program no longer accepts new applications for those past their 21st birthday for individuals with these conditions, with the exception of applicants who are requesting metabolic formula assistance only for Phenylketonuria or Maple Syrup Urine Disease (per Kansas Statute K.S.A. 65-180). This provides the capacity for the program to focus on the child population, first and foremost, and will allow for the expanded care coordination and service delivery the program desires. As the program strives to focus on the overall system of care for CSHCN, rather than direct service delivery, and expand the ability to better understand the needs of the CSHCN from a population health perspective, difficult (albeit necessary) decisions are anticipated.
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 continued to be a central focus through this year, a recognition that the needs of the child and their family have shifted, especially after the COVID-19 pandemic, and the continued focus on stronger collaboration and integration across systems of care is essential. 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 area. While the number of SO’s did not change from SFY19 to SFY20 (8), the catchment area for the SO’s shifted.
The KS-SHCN workforce consisted of a total of 21 individuals, with 5 full-time positions with the remaining staff (SO) working an average of 10 hours or less per week. Staffing needs are assessed annually to ensure adequate coverage to provide holistic care coordination. A decreased in completed applications created a need to reduce the number of hours and make adjustments to the SO regions. These changes will be assessed carefully to determine how to reach more families and grow the program, rather than the continued decline we are experiencing.
|
Workforce Credentials |
SFY2019 |
SFY2020 |
|
Registered Nurses |
14 |
7 |
|
Social Workers |
4 |
5 |
|
Other |
14 |
9 |
|
Total |
32 |
21 |
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 held annually in July (although this event was cancelled in 2020 due to the COVID-19 pandemic).
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 SFY20, a change to the Metabolic Products DAP policy resulted in allowing clients up to $1,200 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) and the Medication DAP (DAP-Rx), 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. The guidelines for this assistance program were also simplified, as the prior directives were found to be confusing to families.
Since the inception of the DAPs, the program has become 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: The KS-SHCN care coordination and data management system (Welligent) continues to be reviewed for efficiencies and enhancements recommended. The focus for 2020 was to ensure all components of the system work efficiently, following the full launch in 2018, but the challenges brought on by COVID has delayed this. The program is still working to assure they can track all care coordination activities and report 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.
Aid-To-Local (ATL) Funding Process: KS-SHCN continued to provide an opportunity for community partners to apply for funding for special projects through an online survey. 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 and 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, Unit Director, KS-SHCN Program Manager, 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 FY2020, the KS-SHCN program awarded six grants. A summary is provided below.
The first half of the reporting year, the KS-SHCN Program Manager and Lead Care Coordinator met with partners to monitor progress on funded projects and to build stronger collaborative relationships. During these in-person meetings, program updates, grantee project progress, technical assistance needs, and next steps were discussed. The program also worked with grantees to identify additional collaboration opportunities to meet the needs of the CSHCN population. Due to the pandemic these in-person meetings did not occur in the second half of the reporting year, but the KS-SHCN Program Manager kept in close contact with each partner to see how the pandemic was affecting their work and their clients. Many of the partners moved to a telehealth format while others like Kansas Youth Empowerment Academy (KYEA) FACES of Change had to adjust their scope of work to focus on the development of a virtual curriculum.
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 SFY2020 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.
KS-SHCN and Cerebral Palsy Research Foundation Partnership: This year, Cerebral Palsy Research Foundation (CPRF) developed a contract with a Durable Medical Equipment
(DME) provider, which resulted in significant discounts on Convaid equipment. CPRF has passed these discounts on to the KS-SHCN program. CPRF also partners with the KS-SHCN program to cost share on more costly equipment, if their funding allows. By doing so, clients have been provided needed DME that our program was unable to previously provide, due to cost exceeding our funding capacity.
During SFY2020, the KS-SHCN Program Manager presented an overview to MCO staff about the program to the MCO Case Managers/Services Coordinators to further improve collaboration and strengthen 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 for orthodontic providers serving cleft lip/cleft palate patients.
NPM 11: Medical Home (Percent of children with special health care needs having a medical home)
The American Academy of Pediatrics (AAP) specifies seven qualities essential to medical home care: accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally effective care. Ideally, medical home care is delivered within the context of a trusting and collaborative relationship between the child’s family and a competent health professional who is familiar with the child and family and the child’s health history.
In the 2018 and 2019 National Survey of Children’s Health (NSCH), the presence of a medical home was measured by a composite measure based on five components constructed from a total of 16 survey items. These components are:
- Personal doctor or nurse
- Usual source for sick care
- Family-centered care
- Problems getting needed referrals
- Effective Care Coordination when needed.
To qualify as having a Medical Home, children must meet the criteria for adequate care on the first three components: personal doctor or nurse, usual source for care, and family-centered care. Additionally, any children who needed referrals or care coordination must also meet criteria for those components in order to qualify as having a medical home.
In 2018-2019 (2 years combined), 57.1% (95% confidence interval (CI), 49.0%-64.9%) of children with special health care needs (CSHCN) and 52.1% (95% CI, 47.6%-56.5%) of children without special health care needs (Non-CSHCN) were reported to have access to a medical home.
CSHCN aged 6-11 years (57.7%) and 12-17 years (57.2%) were more likely to have a medical home than CSHCN aged 0-5 years (55.3%). CSHCN living in a household with two parents (currently married) were significantly more likely to have a medical home than those with a single parent (mother or father: currently married (living apart), formerly married or never married), 66.1% compared to 37.3%, respectively. Medical home access also varied by socioeconomic status. Receipt of care in a medical home also increased with household income: 57.5% of CSHCN living in households with incomes less than 200 % of poverty had a medical home compared to 60.9% of CSHCN living in households with incomes of 400 % or more of poverty.
Non-CSHCN aged 0-5 years (56.6%) were more likely to have a medical home than Non-CSHCN aged 6-11 years (52.9%) and 12-17 years (45.9%). Hispanic Non-CSHCN (39.4%) were significantly less likely to have a medical home than non-Hispanic White Non-CSHCN (57.3%). Non-CSHCN living in a household with English as the primary language were more likely to have a medical home than Non-CSHCN living in a household with a primary language other than English (54.4% versus 35.2%, respectively). Non-CSHCN living in a household with two parents (currently married) were significantly more likely to have a medical home than those with a single parent (mother or father: currently married (living apart), formerly married or never married), 58.2% compared to 34.4%, respectively). Medical home access also varied by socioeconomic status. Receipt of care in a medical home also increased with household income: 40.6% of Non-CSHCN living in households with incomes less than 200 % of poverty had a medical home compared to 66.9% of Non-CSHCN living in households with incomes of 400 % or more of poverty. The difference was significant.
*Data Note: Subgroup analyses should be interpreted with caution due to small numbers in some subgroups.
To assist in increasing children with special health care needs ability to access a medical home, the KS-SHCN program continued to partner with a developmental pediatrician to provide technical assistance and support to others physicians across the state who participated in the 2019 Project ECHO titled “Beyond the Developmental Screen” that was held in FY 19. He was available for assistance, upon request, to provide support via telemedicine.
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:
System Navigation Training For Families: The Systems Navigation Training for Families (SNTF), formally the Family Care Coordination Training, is designed to assist parents/caregivers in increasing their knowledge of medical homes, shared plans 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. SNTF Trainers have lived experience as a parent of a CSHCN. The trainings begin with the trainer sharing their personal story to help families feel comfortable – they will share their hopes, dreams, and daily struggles of being a parent of a CSHCN. Participant response to the program has been favorable. Participants complete a pre/post-test and one-year evaluation, providing information that can be used to improve the training experience. Adolescent clients are encouraged to attend these training to assist them in preparing for their transition to adulthood. The SNTF is offered at no cost to any family in Kansas who has a loved one with any type of special health care need. This training was renamed by the FAC this past year, in hopes of increasing interest and understanding of what this training is designed to accomplish, so more families participate.
Understanding the importance of these trainings, a focus was placed on developing a “train-the trainer” model. A KS-SHCN staff member, who has a CSHCN, and a Family Advisory Council member received this training. Numerous training meetings were held to review the structure, tools and materials used for these trainings. The KS-SHCN staff person began learning the internal process to setting up and conducting these trainings, while the FAC member learned various supporting tasks to strengthen the training experience for families. Both trainers participated in their first in-person SNTF in January of 2020. Additional trainings were to be held later in the year, but due to the pandemic were unable to be held. In lieu of holding the trainings, the work to translate the training in Spanish continued. All materials, presentation and activities are being developed for Spanish speaking families. Training on this will continue with the final training requirement completed by the current trainees and the acceptance of applications for those who would like to become trainers, after the pandemic.
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 providers 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, though this will change in SFY21 to age 12 and older. 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/families have the option of opting out or back in at any time. The informational flyer for the approach is below. Individuals/families who choose to opt out of care coordination services are considered a Level 0 and fall under the parameters of a Level 1 client.
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:
Approximately 50% of SHCN clients opt out of HCC services. Upon review and discussion with families, program staff feels this is due to family’s minimal needs, length on program so extra support is not needed, or they have been successful with HCC and no longer need the additional support. Any clients who opted out of care coordination services are considered level 0 clients and receive services comparable to a a level 1 client per SHCN protocols and procedures.
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 SFY2020, 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.
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 144 families during the SFY2020 contract to connect them with resources and assure children are connected to a primary medical, dental and, if needed, behavioral health home. Care Coordinators assisted families in navigating access to services and resources based on eligibility. A total of 150 office visits, 204 telephone encounters, 14 school visits, and 9 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.
The Cerebral Palsy/Medically Complex (CP/MC) Clinic in Wichita provides care coordination services, per the KS-SHCN model. Collaboration occurs frequently, leading to better service outcomes for those clients who attend clinic. In this 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. The program authorizes services and provides ongoing technical assistance support to the CP/MC clinic staff, as needed. The clinic Care Coordinator participates in Satellite Office trainings.
Bridges Care Coordination Pilot: Infant-Toddler Services (ITS) and KS-SHCN identified a a service gap for children and their families who are moving out of ITS and into 619 Part B or community services. This can be a very difficult and stressful time for both the child and family, with many finding it difficult to navigate the various systems of care (e.g., medical, educational, social, legal, financial).
All children involved with the ITS program will have been identified as children with some type of disability or developmental delay in order to have qualified to receive ITS. Many will transition into 619 Part B services within their local school district, which are child focused services and look very different from IT tiny-k services which are family focused. Other children will not meet the criteria for Part B services and will be looking for services within their communities.
In an attempt to fill this gap, the IT and KS-SHCN programs have partnered to pilot a modified version of the SHCN holistic care coordination program. Families exiting IT tiny-k services whether moving into Part B services or not will be offered the opportunity to participate. This is strictly voluntary, and families can opt out at any time. This will be piloted in six selected communities that have an established SHCN Satellite office and a local IT tiny-k program who would like to participate. One pilot group will be for Spanish speaking families.
Participating sites have been determined, a training format developed that will be done virtually, due to the pandemic, care coordination tools and letters modified, and promotional materials developed. Data will be captured and monitored so changes can be made if necessary, to refine the program to provide the maximum benefit to the children and their families. This pilot is expected to serve a minimum of 60 families. Bridges is part of the All in For Kansas Kids work and funded through the Preschool Development Grant.
Bridges Mission: In collaboration with the IT tiny-k program the KS-SHCN program will provide holistic care coordination to transitioning children and their families to assist them in navigating the complex systems of care for a smooth and stress-free transition experience.
COVID Health Care Fund: Not only did the KS-SHCN staff in the Topeka office provide care coordination services to SHCN clients, but they also stepped up and took on additional duties to help provide care coordination/case management supports for essential workers who contracted COVID. Many in Kansas have been impacted by COVID and the KS-SHCN staff was asked to develop a program to provide assistance to those who were diagnosed with COVID. Since the program was perfectly aligned for this type of work the team was able to put together all aspects of the program in a couple of weeks. All program components were based off of the KS-SHCN Holistic Care Coordination model and provided services to over 700 individuals across the state. Kansans had the opportunity to receive financial help with COVID-related medical bills and treatments, lost wages, and a stipend to cover additional over-the-counter COVID supplies.
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 children 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 was to complete the System Navigation Training for Families (SNTF) train the trainer course in 2020 and begin assisting with the facilitation of these trainings with families by the fall of 2020. However, she was unable to complete her training due to the pandemic, but will complete this training and begin co-facilitating these training in 2021.This individual will also be part of the new Bridges program.
Pediatrics Supporting Parents (PSP) Phase 2: In June 2020, KDHE began working with partners within the United Methodist Health Ministry Funds (UMHMF) to engage in discussions around researching existing care coordination models, alignment with Medicaid service coordination, and focusing on improving young children’s social and emotional development in pediatric primary care by strengthening care coordination practices delivered by Kansas’ Medicaid managed care organizations (MCOs). More of this narrative is outlined in the Child Health Domain Report.
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.
Due to the COVID crisis, work to strengthen these partnerships has been delayed, however these are still a primary focus, along with establishing partnerships with FQHCs and pediatric offices throughout the state.
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 was aligned to add this diagnosis to the list of conditions covered by the program for services and supports upon the “go-live” date in the fall of 2020. A new subcommittee focusing on Pompe Disease and Hurler Syndrome was also established, with the intent to add these two conditions to the NBS core panel in early January 2021. Under the direction of a new NBS Program Manager, the KS-SHCN program has now become a continuous participant in new sub-committees as they are formed.
Supporting You: The KS-SHCN program continued to participate in the Supporting You Network as a participating program. Historically, SHCN Care Coordinators have promoted peer support groups to the families they work with as the valuable resource they are. Promotion of Supporting You is imbedded not only in our client work, but also in SHCN program presentations. When clients are referred to Supporting You, their Care Coordinator will follow-up to ensure a supporting peer match has been made. Since the KS-SHCN program works with many parents who have become experts in navigating the various systems of care, SHCN staff work to recruit these individuals as supporting peers for the network. More information about Supporting You can be found in the Cross-Cutting Report and Plan narratives.
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