692 - Access to Mental Health Services for Children, Adolescents, and Young Adults with Down Syndrome and Impact of the COVID-19 Pandemic

Individuals with Down Syndrome (DS) are at increased risk for mental health conditions such as mood and anxiety disorders. Research is limited in understanding access to mental health services (MHS) for persons with DS with co-occurring mental health/behavioral needs.

Objective:

The objectives of this study were to identify barriers to access of MHS for children, adolescents, and young adults (CAYA) with DS and comorbid behavioral/mental health conditions prior to the pandemic as well as impacts of the pandemic on behavior/mental health symptoms in CAYA with DS and their access to MHS.

Design/Methods:

An online survey of caregivers of persons with DS was collected from October 2020 through August 2022. We selected cases of caregivers with dependents ages 3 years through 25 years with DS with comorbid diagnoses of anxiety, OCD, depression, ADHD, and autism spectrum disorder as well as those whose caregivers indicated moderate-serious concerns about their child’s emotions, concentration, or behavior. We examined access and barriers to care prior to the onset of the pandemic, types of services utilized and family satisfaction, impacts of the pandemic on the family’s life and on the child’s behavior/mental health, and changes in access to services.  

Results:

The sample included 150 CAYA with DS, and 55% of these met inclusion criteria. Of the selected cases, dependents had a mean age of 11.5 years. ADHD (15%) and anxiety (13%) were the most common comorbid behavioral/mental health diagnoses reported. 26% of caregivers reported concerns about their child’s mental health in the year before the onset of the pandemic. Over 25% of caregivers felt that their child needed to see a mental health professional but was unable. 38% reported it was somewhat or very difficult to get the mental health treatment the child needed. Patient age, ethnicity and race, geographic location (rural vs urban), insurance status, and caregiver education level were not significant predictors in a child’s ability to access MHS.

Following the onset of the pandemic in March 2020, over half reported an increase in the child’s behavioral/emotional problems, and 35% reported that stay-at-home orders affected the child’s mood or behavior in a way that required medication attention. However, 30% of all selected cases were unable to access mental health treatment or therapy.

Conclusion(s):

Findings suggest that mental and behavioral health concerns are common among caregivers of CAYA with DS. Difficulty accessing MHS is also common and appears to cut across demographic and socioeconomic characteristics.