CSHCN: Annual Report

FY 2022 Annual Report

According to the 2020-2021 National Survey of Children’s Health (NSCH), 19.2% or 86,109 of Idaho’s children have a special health care need, which is an increase from 18.6% based on 2019-2020 data. The 2020 5-Year Needs Assessment (NA) highlighted that children and youth with special health care needs (CSHCN) living in Idaho face major barriers when trying to access health providers, pediatric specialists and sub-specialists, oral health services, and care coordination primarily due to health care provider shortages, long travel distances to obtain care, and Idaho’s rural geography.

For the CSHCN domain, NPM 12: Transition was selected to align with one of the state’s priority needs of promoting a smooth transition through the life course of CSHCN. To monitor the progress towards addressing this priority, the MCH Program developed ESM 12: The number of families who received support or services from the Family-to-Family Resource Center. A state performance measure (SPM) was developed to focus on increasing access to medical specialists and is discussed in detail in the narrative below. To monitor progress towards addressing this priority, Idaho developed an objective to fund and support services, programs, and activities focused on screening, referral, and access to medical specialists by September 2025. Measurement of these objectives is based on fiscal support from the Title V MCH Block Grant and an inventory of activities in which the MCH Program is involved. Strategies to address these objectives, national performance measure (NPM), and SPM are discussed below.

Improving Quality of Care

Children’s Special Health Program

The MCH Program continues to fund and operate the Children’s Special Health Program (CSHP), which is a statewide financial assistance program for uninsured children with qualifying medical conditions requiring long-term, multi-disciplinary medical treatment and rehabilitative measures to improve overall ability to function and increase independence. The CSHP’s family-centered, community-based, and culturally sensitive care is provided through private providers and clinics around the state and includes diagnosis, evaluation, and medical rehabilitation services. The CSHP provides financial support to residents of Idaho from birth to eighteen years of age who are uninsured. The program covers eight major diagnostic categories: Cardiac, Cleft Lip/Palate, Craniofacial, Cystic Fibrosis (CF; no insurance restrictions), Neurologic, Orthopedic, Phenylketonuria (PKU; no insurance restrictions), and Plastic/Burn. Children must meet the following criteria to be eligible for support from CSHP: Idaho resident, less than 18 years of age, and have no health insurance. The extent of CSHP financial support is determined by a sliding scale based on a family’s annual income and family size and is subject to annual payment limits per client.

Since November 2020, accountability for claims processing has resided with the MCH Program. The CSHP staff have identified and completed several steps to successfully return the claims adjudication process to the MCH Program from a third-party vendor: distributing communication to medical providers, refining the CSHP medical claims process workflow, creating a user guide for the SeaShip database, identifying how care coordination could support CSHP, and developing an updated workflow for the CSHP application process and annual renewal procedures. As part of this transition, the CSHP application form and application checklist were revised and uploaded to Idaho Department of Health & Welfare’s CSHP webpage.

Through CSHP’s efforts to promote increased participation in CSHP, the program has seen a slight increase in enrollment for pediatric and maternal participants and an increase in medical claims payout. In FY 2022, there were approximately 71 pediatric special health care needs participants enrolled in the CSHP across the eight diagnostic categories and 2 maternal PKU participants. The estimated payout of CSHP claims in 2022 was approximately $17,472, which was higher than the 2020 payout of $12,000. Additionally, CSHP pays for medical travel for enrolled children to access medical specialists out of the state for CF participants. In FY 2022, CSHP paid $1,500.00 for a CF participant to receive specialty care out of state. Additionally, CSHP paid $2,797 for a medical specialist and dietitian to travel to the eastern and northern regions to provide in-person PKU satellite clinic services, which allows them to stay close to home for specialized medical services.

The CSHP pays for medical formula and foods totaling approximately $200,000 per year under the PKU Program. In FY 2022, CSHP staff continued to work with the department’s Central Revenue Unit (CRU) staff to resume third-party reimbursement activities for medical food and formula billing. CSHP staff also worked with the department’s Contracting & Procurement Services staff to extend contract agreements to ensure CSHP participants have access to a variety of phenyl-free formula and food options and successfully added two new vendor options, Vitaflo and Nexus. The program’s primary focus is on pediatric CSHP PKU participants; however, maternal clients are encouraged to apply when pregnancy is confirmed and continue to receive the benefits of participation through six-weeks postpartum. Additionally, adult PKU participants can receive a monthly allowance up to $250 for medical food at the State of Idaho’s wholesale cost if adults purchase their medical formula in conjunction with CSHP’s quarterly orders.

Transition to Adulthood

According to the 2020-2021 NSCH data, 23.2% of CSHCN received services necessary for transition to adult health care, up from 19% in 2019-2020. A total of 23.4% of non-CSHCN received services necessary for transition to adulthood in Idaho, up from 21.7% in 2019-2020. The MCH Program supports transition to adulthood for the CSHCN population through the development and dissemination of transition-to-adulthood tools and resources to help empower CSHCN youth and families to take a primary role in their healthcare. Issues like health insurance, finding a doctor who cares for adults, choosing a work or school setting, transportation, and housing present new and sometimes overwhelming challenges. The transition tools and resources cover these issues in an interactive, step-by-step approach by providing information and guidance about a very important part of that process–gaining healthcare independence. Parents can learn how to support youth in taking charge of their health care, and youth, teens, and young adults can learn the skills that will prepare them for success. Youth with special health care needs may need more time and practice to reach that goal, so early adoption of these transition plans is crucial for success. The MCH Program had free English and Spanish transition resource folders available for anyone in Idaho that provided youth and families with education and support for transitional activities specific to certain age groups: 12-15 years old, 15-18 years old, and over 18 years old. These informational materials had been created in 2011, and over the years the MCH Program had seen a steady decline in orders from the community for these transitional resources. It was decided that using an online digital format would be more accessible for CSHCN, especially during the pandemic. The MCH Program met with staff from Got Transition and decided to use a link to Got Transition’s materials for transition support on our Children’s Special Health Program webpage. The remaining transition resource folders were provided to Idaho Parents Unlimited (IPUL) to distribute to CSHCN youth and families.

A recommendation from the 2021 Idaho MCH Block Grant Review was to work with St. Luke’s Health System (SLHS) to leverage resources. It was determined that the best way to initiate transition work with SLHS was to work with SLHS’s Children’s Care Coordination Team. In 2022, the CSHCN Director, IPUL Executive Director, and SLHS staff met to discuss health care transition work with the supervisor of the Children’s Care Coordination Team. In this initial meeting, there was alignment in supporting SLHS’s care coordination team with Got Transition’s resources and tools to ensure successful health care transition into adulthood. The MCH Program was able to determine the scope of work and how to allocate funding support. Some initial priority areas that were identified in this collaborative work included: selecting or adapting assessment tools for transition, working with SLHS’s IT staff to incorporate assessment tools and other health care provider resources into their electronic health record (EHR) system, reimbursement for transition interventions, and transition training for healthcare providers. Additionally, it was identified that CSHCN staff would work with Idaho Medicaid and other health insurance systems specifically to address the reimbursement component for transition to adulthood. However, due to staffing constraints further work with the SLHS care coordination team were discontinued in 2022. 

In November 2022, the CSHCN Director and IPUL Executive Director began initial discussions about applying for AMCHP’s Innovation Replication Project. The goal of the application would be to obtain financial and coaching support for health care transition work in Idaho. In March 2023, an application was submitted following research, discussion, and MCH and Division of Public Health (DPH) leadership approval. The practice selected for replication is Got Transition’s Six Core Elements of Health Care Transition in Medicaid Managed Care. The timeline for this project will be from May 2023 to April 2024. The focal population is CSHCN youth between the ages of 14-16 years. The project plan includes pre-and-post readiness assessments for CSHCN youth and their families and the development of a medical summary. Another component of this project will be efforts to work with Idaho Medicaid to incorporate health care transition-related Current Procedural Terminology (CPT) codes and reimbursable fees into the Idaho Medicaid Provider Handbook. Reimbursement for transition-related health care interventions as well as embedding Got Transition’s assessments and tools into EHR systems will ensure consistent and successful use of health care transition strategies. Additionally, a Transition Advisory Group will be developed to support the ongoing work and challenges faced during this project.

The 2021-2025 MCH state action plan identified two strategic focus areas for CSHCN: improving access to medical specialists for children and youth with special health care needs and promoting smooth transition through the life course. These two strategic focus areas blended in 2021 into a very beneficial opportunity. Mental health and behavioral health specialty care services was an area that Idaho’s CSHCN families prioritized as a great need. The MCH Program allocated Title V Block Grant funding to support a 6-session, ECHO (Extension for Community Healthcare Outcomes) tele-mentoring program on Pediatric Behavioral Health series for primary care providers and other clinicians throughout the state of Idaho. These sessions were led by a panel of subject matter experts and provided best practices, assessment tools, and treatment recommendations for addressing common pediatric mental health conditions including depression, anxiety, trauma, suicide, comorbidity, attention deficit disorders, substance use disorders, and crisis management resources. Two additional sessions were added to the ECHO series to address healthcare transition to adulthood needs. One of these sessions was led by Dr. Patience White, Got Transition’s Co-Project Director, and provided best practice recommendations, assessment tools, and resources for primary care providers to support CSHCN youth and families in their transition to adult health care services. The second session provided a parent perspective in navigating the hurdles of transition and was supported by IPUL and the Idaho Parent Network for Children’s Mental Health. The results of the ECHO Idaho Pediatric Behavioral Health and transition series were exceptional. The series was well attended, with participants from all seven of Idaho’s public health districts (PHDs), and 73% of the participants were practicing healthcare providers. Approximately 92% of post-series survey respondents indicated their knowledge, competency, or practice changed because of their participation and 96% reported that they were more effective at treating pediatric patients with behavioral health concerns.

To promote MCH’s work to support children, youth, and families of CSHCN, staff started planning the development of a CSHCN webpage for youth and families and a CSHCN webpage for healthcare providers. Staff worked with IPUL to ensure alignment with their website and the services they offer to families. In September 2021, a parent focus group was conducted with IPUL’s assistance to determine what should be included on the CSHCN webpages. The focus group recommended the following six focus areas for both webpages: 1. Access to healthcare; 2. Medical home; 3. Dental home; 4. Care Coordination; 5. Healthcare transition; and 6. Training and resource organizations.

In FY 2022, both CSHCN websites went live and quickly became a reliable source of information and resources for CSHCN families and those who serve CSHCN. The CSHCN website for youth and families received 1,072 total page views and 799 unique page views in 2022. The CSHCN website for providers received 188 total page views and 142 unique page views. Additionally, individuals can reach out to a DHW staff member via a phone number and email listed on the webpages who can provide individual assistance and answer specific questions. During 2022, 25 family members reached out via phone call or email asking for assistance and 11 service providers such as targeted service coordinators, care coordinators, or support brokers reached out via phone call or email seeking assistance.

The MCH Program continues to have a formalized relationship with the state’s Family-to-Family Health Information Center, Idaho Parent’s Unlimited, Inc. (IPUL). IPUL is a family-led organization dedicated to supporting families raising children with disabilities and special health care needs. IPUL provides training, education, resources, and information to empower these families and promotes strong family and professional partnerships throughout their journey from birth to adulthood. As an organization, IPUL understands the importance of lived experiences, and the staff and board of directors are primarily parents of CSHCN, allowing staff to establish trusting relationships with the families served.

IPUL's primary focus is to ensure that parents have access to the necessary information, resources, and support systems to navigate the complex health care and education systems for their children. IPUL offers various resources through workshops, webinars, presentations, and personalized assistance. IPUL’s training workshops emphasize family-centered care and teach effective advocacy skills, both at the individual level and within larger systems. Trainings and workshops cover a wide range of topics, including advocacy, infant and toddler services, coordinating medical home services, transition to adulthood, how to access mental health systems, and understanding Idaho's Medicaid systems. IPUL also provides training on education-related matters, such as special education planning, community-based services, accommodations, and independent living. Moreover, IPUL prioritizes the development of leadership skills in parents and youth through programs like the Parent Leadership Development Institute and the Work of Art Employment Skills Building Program.

IPUL continues to grapple with the challenge of meeting the growing demand for their services while managing limited funding and resources. Staff have worked continuously to develop a hybrid model of delivering training workshops both in person as they have the capacity to do so, as well as via Zoom and Facebook Live. The level of activity in 2022 surpassed even pre-pandemic levels, and staff are thrilled to report this positive trend. IPUL’s dedicated staff provided over 80 training opportunities. Additionally, IPUL staff actively participated in numerous in-person events where both families and professionals were trained. IPUL staff were present at numerous events hosting information tables where hundreds of families, youth, and professionals expressed keen interest in IPUL’s services.

An example of the impact that IPUL makes for families in Idaho is included in a success story from 2022. IPUL helped a family in eastern Idaho who were told that behavioral intervention wasn't available for their daughter, despite her eligibility through a determination process. The family was told behavioral intervention was not something the school was required to pay for, and the school would not be providing this service.  After working with the family, the school district, the State Department of Education, and the Department of Health and Welfare, IPUL was able to help the family access the behavioral intervention their child required. This meant that the child was supported and no longer being improperly removed from school due to lack of support services. One of the greater successes of this story was how it led to increased collaboration between the three organizations. IPUL hosted a Facebook Live Lunch and Learn training opportunity on School-Based Medicaid, and we further collaborated to create a School-Based Medicaid FAQ document that is now available for all families in Idaho.

This formalized relationship between MCH and IPUL is to enhance the capacity to provide technical assistance and systems navigation to families of CSHCN, provide parent and professional trainings as well as leadership events, and to offer consultation to the MCH Program on policy and program development. IPUL achieved the following deliverables with great success in 2022:

• Served 1,884 families through one-on-one assistance.
• Hosted 83 trainings and workshops across the state on topics relevant to families of CSHCN supported by Title V MCH subgrant funds.
• Assisted 1,629 parents and professionals through trainings. This includes duplicated numbers as well as estimates where demographic information was unable to be collected.
• Provided consultation to MCH on programming for CSHCN in Idaho.
  • Consultation included: reaching parents/caregivers of CSHCN through social media, providing review and input on educational materials, conducting surveys and focus groups, providing feedback on program operations, input on an application for AMCHP’s Innovation Replication Project focused on transition, and assisting with selection of CSHCN priority intervention activities.

The MCH Program continues to be a contributing sponsor of the Tools for Life Fair. This event is led by the Idaho Assistive Technology Project located at the Center on Disabilities and Human Development as part of the University of Idaho's College of Education. Tools for Life is for transitioning youth with disabilities and all who support them. Attendees include general educators, special educators, therapists, counselors, service providers, job developers, other rehabilitation specialists, and most importantly high school students with disabilities and their families. Each year, the Tools for Life Fair is held in a different city in Idaho to make it more accessible to students and families across the state. In 2022, the Tools for Life event was held in Moscow, Idaho. There were 199 attendees total: 90 students, 72 professionals, 25 educators, and 12 family members.

Advisory Councils

The Idaho Title V CSHCN Director serves as an active member on the state’s Emergency Medical Services for Children (EMS-C) Advisory Council with the purpose of providing the perspective of EMS needs for CSHCN. In 2022, the CSHCN Director provided a presentation regarding newborn screening to the EMS-C Advisory Council. The council’s all day in-person committee meeting was focused on developing a Hospital Recognition Program for Pediatric Emergencies (EMSC 04) for Idaho. This recognition program emphasizes the hospital’s capacity to stabilize and/or manage pediatric medical emergencies.  

The CSHCN Director also maintains membership on the Idaho Council on Developmental Disabilities (ICDD). This council is an outcome-oriented, mission-driven organization that leads the way in advancing issues that improve the lives of people with intellectual and developmental disabilities and their families. In 2022, the council learned about Disability Crisis Prevention and Court Services from representatives from DHW and Adverse Childhood Experiences & Trauma Informed Care from staff with the Idaho Children’s Trust Fund. Additionally, the council provides regular updates on their contracted work with the Criminal Justice Department at Boise State University to better understand victimization among persons with disabilities. The purpose of this project is to help Idaho better comprehend how services that monitor and collect reports of abuse, neglect, and exploitation are meeting the needs of people with disabilities. Another focus for the council is providing person-centered training throughout the state.

The council is also an active advocacy group and is very involved during the legislative session. During the 2022 session, ICDD supported several bills including the Down Syndrome Information Act, the Extended Employment Services Program bill, Idaho Kids Count (Children’s Medicaid Coverage Campaign), Proposed Southwest Idaho Treatment Center statute changes, and the Adult Developmental Disability Resource Allocation Model. ICDD was considered an integral stakeholder in the Joint Legislative Oversight Committee’s overview of the Office of Performance Evaluation report on Medicaid Rate Review Setting as well as the planned proposal for the 2023 study that will be focused on Direct Support Workforce in Home and Community Based Services.

The CSHCN Director also participates in Act Early Idaho, a project through the Idaho Center on Disabilities and Human Development, which helps families and professionals to monitor children’s development and identify concerns early to promote early intervention. The CSHCN Director also connected with early intervention staff by presenting to the Idaho Infant & Toddler Council in 2022. The presentation focused on the definition of CSHCN, current CSHCN strategies in Idaho, the Children’s Special Health Program, and the Newborn Screening Program. 

Improving Access to Medical Specialists

Specialty Clinics

While the MCH Program acknowledges that linkage to a medical home is critical for receipt of high-quality care for CSHCN, the state continues to struggle with lack of access to specialty and sub-specialty care providers, which impacts the quality care for CSHCN. To illuminate this unique need, the state developed a SPM focused on increasing access to medical specialists. To support this state priority and SPM, the MCH team developed the objective of funding and supporting services, programs, and activities focused on screening, referral, and access to medical specialists. Measurement of this objective is based on fiscal support from the Title V MCH Block Grant and an inventory of activities in which the MCH Program is involved.

To address the need for access to medical specialists, the MCH Program funds specialty pediatric clinics for PKU, CF, and other conditions, including cardiac, cranial, orthopedic, endocrinology, and rehabilitation through a subgrant with Eastern Idaho Public Health (EIPH). In FY 2022, the MCH Program funded 1 cardiac/pacer clinic, 5 orthopedic clinics, 8 endocrinology clinics, and 16 rehabilitation specialty clinics through the EIPH subgrant.

Annually, the MCH Program supports pediatric genetic, metabolic, PKU, and CF clinics through subgrants with SLHS’s Children’s Hospital in Boise. The subgrants provide funds for SLHS’s Registered Dietitian (RD) with expertise in inborn errors of metabolism to coordinate genetic clinics, metabolic and PKU clinics, and PKU nutritional support activities with EIPH. The MCH Program supports personnel time for SLHS’s RD to participate in quarterly metabolic clinics in northern and eastern Idaho. This same RD has assumed the role of coordinating care for all children with PKU living in Idaho.

During the beginning of the pandemic, all in-state travel was halted, and clinics were held predominantly via telehealth. In 2022, in-person satellite clinics at local health districts and in-person clinic appointments at St. Luke’s Genetic and Metabolic Clinic and CF Center have resumed. Patients are still able to access clinics via telehealth, as appropriate and requested. There was a total of 576 unduplicated pediatric patients seen in FY 2022 across all clinics.