CSHCN: Annual Report

FY 2021 Annual Report

According to the 2019-2020 National Survey of Children’s Health (NSCH), 18.6% or 82,285 of Idaho’s children have a special health care need. 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 specialist 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, 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 program for children with significant health problems or chronic illnesses/conditions requiring long-term medical treatment and rehabilitative measures. 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 (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 identified and completed several steps to successfully return the claims adjudication process to the MCH program from a third-party vendor, including: 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 DHW’s CSHP webpage.

Despite CSHP’s efforts to promote increased participation in CSHP, the program continues to see a decrease in enrollment and medical claims payout. In FY 2020, there were approximately 70 pediatric special health care needs patients enrolled in the CSHP across the eight diagnostic categories. The estimated payout of CSHP claims in 2020 was approximately $12,000, which was significantly lower than previous years. Additionally, CSHP pays for medical travel for enrolled children to access medical specialists not offered in the state. In FY 2021, CSHP paid $304.55 for one CSHP participant to receive specialty care out of state. Additionally, CSHP paid $1,350.10 for a medical specialist and dietitian to travel to the eastern and northern Idaho regions to resume in person PKU satellite clinics.

Under the PKU Program, the CSHP pays for medical formula and foods totaling approximately $200,000 per year. In FY 2021, CSHP staff worked 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. 

In FYs 2020 and 2021, staff dedicated time to a required chapter rewrite of Idaho Administrative Code 16.02.26, the administrative rules that guide the CSHP. CSHP staff proposed changes to improve service delivery for the CSHCN population. The proposed changes were presented for approval during the 2022 legislative session.

Transition to Adulthood

According to current NSCH data, 19% of CSHCN received services necessary for transition to adult health care and 21.7% of non-CSHCN received services necessary for transition to adulthood in Idaho. 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 from the community for orders 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.

In FY 2021, MCH Program staff met with Got Transition staff to learn about best practices and effective strategies to support transition activities for CSHCN and non-CSHCN youth and families as well as health care systems in Idaho. As a result, MCH staff have been in communication with the children’s hospital partner, St. Luke’s Health System (SLHS), to discuss how to support transition activities for the CSHCN and non-CSHCN populations in Idaho. These initial conversations have included an IPUL representative, who is the state’s Family-to-Family partner, to understand how to best meet the transition needs of CSHCN families.

The MCH Program continues to sponsor 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 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. 

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. 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 an 8-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. Work on these webpages will continue in the coming months.

The MCH Program continues to have a formalized relationship with the state’s Family-to-Family Health Information Center, Idaho Parent’s Unlimited (IPUL). IPUL’s priorities are to ensure parents have the information, resources, and supports they need to navigate the complex systems of health care and other services that their children need. In addition to IPUL’s work with families, IPUL’s staff participate on many councils and committees in Idaho, regionally, and at the national level to represent parents. These currently include the Consortium for Idahoans with Disabilities (CID), the Infant Toddler Coordinating Council, Regional Early Childhood Committees, the Western States Regional Genetics Network, the Idaho Newborn Screening Advisory Group, the State Rehabilitation Council, the Interagency Committee on Secondary Transition, The University of Idaho’s Center on Disabilities and Human Development’s Community Advisory Committee, and The Idaho Caregiver Alliance.

The purpose of this formalized relationship is to enhance capacity to provide technical assistance and systems navigation to families of CSHCN, provide parent and professional trainings and leadership events, and offer consultation to the MCH Program on policy and program development. IPUL achieved the following deliverables with great success in 2021:

• Served 1,982 families through one-on-one assistance.
• Hosted 66 virtual parent and professional trainings and workshops across the state on topics relevant to families of CSHCN.
• Assisted 1,591 parents and professionals through trainings (this includes duplicated numbers as well as estimates where demographic information was unable to be collected).
• Created a “Transition Wheel” that provides guidance for youth and families for transition activities by age group.
• Updated IPUL’s Building a Bridge transition guide for families and those that service CSHCN
• 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, developing recommendations for the development of a CSHCN website, and assisting with selection of CSHCN priority intervention activities.

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 FY 2021, the CSHCN Director was provided an opportunity to write a quarterly newsletter article titled, “CYSHCN and Emergency Medicine,” and share resources and tools that focus on emergency planning for children and adults with special health care needs. The CSHCN Director also maintains membership on the Idaho Council on Developmental Disabilities. 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. Additionally, the CSHCN Director 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.

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 will be 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 this objective and SPM are discussed on the following pages.

To address the need for access to medical specialists, the MCH Program funds specialty pediatric clinics for PKU, Cystic Fibrosis, and other conditions, including cardiac, cranial, orthopedic, endocrinology, and rehabilitation through a subgrant with Eastern Idaho Public Health (EIPH). In FY 2021, the MCH Program funded 11 cardiac/pacer clinics, 1 cranial facial clinic, 4 endocrinology clinics, and 14 rehabilitation specialty clinics through the EIPH subgrant.

Annually, the MCH Program supports pediatric genetic, metabolic, PKU, and cystic fibrosis 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 and travel 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 person satellite clinics at local health districts and in-person clinic appointments at St. Luke’s Genetic and Metabolic Clinic and Cystic Fibrosis Center have slowly resumed. Patients are still able to access clinics via telehealth, as appropriate. Across all clinics, there were a total of 587 unduplicated pediatric patients seen in FY 2021.