Background: In the United States, it is estimated that one in six children have a developmental disability. (1) Yet in California, only 3% of infants and toddlers receive early intervention services. (2) On average, 95-100% of our incoming class of preschoolers is screened and as many as 54% are flagged for developmental delays using the ASQ and/or a parent concern. Students that are flagged do not always qualify for services because of strict eligibility criteria and additionally, systemic racial and healthcare barriers make accessing early intervention services challenging.

Methods: In order to address this gap, we created a program called Bridge to Preschool designed as an early intervention program for children in need of additional language and social-emotional development support prior to 3-year-old preschool. The program provides students and parents programming, support, and opportunities to build language and social-emotional skills.

Results: All students who participated in one of our early rounds improved their ability to self-manage and one third improved their skills in five social emotional domains. Students with the most gains were those with strong language skills. Parents reported learning more about preschool and better understanding the need for early intervention after observing their child with peers.

Conclusions: Bridge to Preschool meets an important need serving students who would benefit from services but do not qualify. While as many as 44% of our students who qualify begin external services, we continue to offer Bridge to Preschool to students in need of additional support prior to preschool.

Children and Youth with Special Health Care Needs (CYSHCN) are those who have or are at increased risk for a chronic condition and also require higher amounts of health and related services. Therefore, CYSHCN rely heavily on health insurance coverage to access needed care, yet variation in access exists.

Our objective was to systematically examine the variability of state Medicaid coverage for five prevalent chronic medical conditions affecting CYSHCN, and the accessibility of coverage information.

We systematically extracted Medicaid eligibility information from state-affiliated websites for all US states and DC, to determine if the following are listed as qualifying conditions to obtain Medicaid coverage: autism, asthma, cerebral palsy, HIV/AIDS, and sickle cell disease. A second reviewer extracted data for 28 states (>90% agreement). We descriptively analyzed coverage eligibility by state for each condition and the time required to locate these data.

Across states, cerebral palsy is most often listed as a Medicaid-eligible condition (73%), while HIV is least (33%). Asthma (55%), autism (52%), and sickle cell disease (65%) have intermediate rates for eligibility. HIV was the condition least likely to be found (59%). Information accessibility varied, with median time for data extraction estimated at 38.86 minutes (range: 14 to 91 minutes).

We identified significant state variation in Medicaid eligibility for conditions prevalent among CYSHCN. Data accessibility within state online sources was limited, which may impact family’s understanding of their child’s coverage options. These findings suggest inequities embedded within Medicaid policy and may impact CYSHCN in accessing needed insurance coverage and care.

Background

Autistic children, children and youth with special healthcare needs (CYSHCN), and their families often face challenges accessing the healthcare they need. One barrier to care is the partnership of the child, caregiver, and healthcare provider. The goal of this study is to explore how autistic children, CYSHCN, and their caregivers interact with providers, and the potential impact of the COVID-19 pandemic.

Methods

Data from the 2018-2021 National Survey of Children’s Health (NSCH) was used to explore how autistic children and CYSHCN ages 11-17, and their caregivers interact with providers. Prevalence of outcomes were calculated for 2018/2019 and 2020/2021 plus percentage differences between them.

Results

In 2018/2019, 57% of caregivers of autistic children always felt like a partner in their child’s care, compared to 69% of CYSHCN. From 2018/2019 to 2020/2021, there was a 12% increase in caregivers of autistic children feeling like a partner in their child’s care. Two thirds (64%) of autistic children worked with their providers to gain skills to manage their care, as did 80% of CYSHCN with no change during the pandemic. Finally, 48% of autistic children spent time alone with their provider at their last visit, in both time points, which was lower than CYSHCN (58%).

Conclusions

These results highlight areas of care needing improvement among autistic and CYSHCN. Systemic change within the healthcare system, including reimbursement and provider training, is needed to better support disabled youth and their families, and future research should explore how interactions with the healthcare system can be improved.

Purpose: The purpose of this project was develop and test a Childsplay arts program for children with special healthcare needs and their parents that improves parents and children’s social/emotional wellbeing.

Background: To address the need for fun and play, an interdisciplinary team of faculty composed of artists and healthcare professionals collaborated with a local children’s theater company to encourage play through re-creating steps to stage a production. Our intervention was designed based on in-person theater productions, thus we had to pivot during COVID-19 pandemic to providing theater experiences in the family home.

Methods: The theater company developed boxes that included elements of theater productions: scenery, costume, sound, and encouraged imaginative play with family members. A series of three boxes were created per family and distributed every 6 weeks. With each distribution, a theater teaching artist would communicate with the family via Zoom to describe how to use the contents and create theater play. Pre and posttests (WHO Wellbeing Index, Perceived Stress Scale, Quality of Life Scale, and Family Apgar) were administered once parents had consented for their children to participate and repeated when the families had completed the intervention.

Results: Their quality of life score significantly improved (p <.01), their perceived stress was unchanged, the family APGAR was unchanged, and their wellbeing improved, but not significantly.

Conclusion: Helping parents and other siblings enjoy playing with the child with special healthcare needs significantly improved the parents’ quality of life and to a lesser extent, their wellbeing.

Care for children with rare or unknown disorders requires focused, interdisciplinary and integrated resources to improve diagnosis and treatment. In response to the declining birth rate, uneven distribution of professional manpower and the application of “cutting-edge” technologies, Taiwan has established an integrated undiagnosed diseases platform in children with the support of government funding since 2021.

A Remote Consultation System based on Hospital information system (HIS), Picture Archiving and Communication System (PACS), Electronic Medical Record Exchange Center (EEC) and National Health Insurance (NHI) based “PharmaCloud System” has constructed. And, an expert advisory committee has been established along with standard protocols for referral, counseling, genetic testing principle, etc. There is one coordinating center and 13 clinical sites in Taiwan including remote areas and islands. Physician at clinical sites can initiate the consultation request online and initial response will be provided on a case-by-case basis, no later than one month. This nationwide platform has accepted 23 undiagnosed applicants and made 6 confirmed diagnoses in 2022.

The COVID-19 pandemic has accelerated the development and adoption of digital solutions and advanced technology tools in health systems. This cloud scouring system overcomes the barriers to healthcare accessibility and facilitates diagnosis of some of the most complex medical cases. Physicians and patients in low-resource areas can receive timely assistance. This is a demonstration of achieving health equity, and high-quality care. In addition, it will promote research into the biological mechanisms and therapeutic directions of undiagnosed diseases in children through international cooperation.

Introduction: Rare diseases (RD) affect over 10,000 individuals in the US, and the excess burden on patients and families are a matter of public health. Individuals with RD often undergo lengthy diagnostic odysseys resulting in delayed diagnosis and missed opportunities for timely and optimal treatment. This study examines the relationship between time from symptom onset to diagnosis with cumulative healthcare events undertaken when seeking a diagnosis.

Methods: The study sample included 1,300 RD patients and caregivers’ respondents to the Rare Disease Impact Survey in 2020. The survey included questions about disease status and history, including the year of symptom onset and year of diagnosis, demographics, non-medical costs, and health care events related to RD (e.g., number of primary care and specialty physicians seen, inpatient (IP) and emergency department (ED) visits, and number of out-of-state trips). Analyses were stratified by age <19 (N=383) and ≥ 19 (N=917) at the time of the survey and length of the diagnostic odyssey (calculated as the length of time in years from symptom onset to RD diagnosis and categorized as <2, 2-5, and ≥6 years. Means and Standard deviations were computed.

Results: In children and adults, a shorter diagnostic odyssey was associated with fewer healthcare events before diagnosis. Furthermore, a dose-response was observed in the relationship between the increasing length of the diagnostic odyssey and the increasing number of specialty physicians seen, ED visits, and IP admissions.

Conclusion: These findings underscore the cumulative burden of time spent seeking an RD diagnosis on patients and families.

Background: South Carolina (SC) has the third-highest pediatric obesity rate nationwide, and youth with autism spectrum disorder (ASD) are at nearly twice the risk of experiencing obesity, compared to their typically developing peers. Wellness Education to Create Health habits and Actions to Thrive (WE CHAT) is a novel chatbot that engages participants to enhance primary care delivery and associated care coordination services through mobile health (mHealth) technology, including SDOH and social-emotional health. Existing mHealth technology has not considered youth with ASD. This study examines the implementation of innovative mHealth technology for youth with ASD, specific to those at-risk of experiencing obesity.

Methods: Three phases included: 1) a focus group among individuals and parents of children with ASD (N=8) and interviews with 2) primary care providers who treat youth with ASD (N=4) and 3) interdisciplinary rehabilitation providers (N=10). Phases 1 and 2 employed rapid qualitative analysis, and Phase 3 examined the cross-section of prior phases to provide context to identified gaps.

Results: Phase 1. Symptomology variability, safety concerns, and sensory components were identified as high priority adaptations. Parents also reported burden of adapting technology for their child’s use with limited support. Phase 2. Symptomology variability and cost of participation were identified as referral barriers. Phase 3. Rehabilitation providers making adaptations during treatment sessions, offering choices, and adjusting home exercise programs to account for provider- and family-reported barriers.

Conclusions: Results from this study will inform refinement of an innovative mHealth technology and expand its applicability and inclusivity of patients’ system-wide.