Lived Experience and Service Gaps for Washingtonians with Co-Occurring IDD and Mental Health Needs

• In Event: Governance, Digital Inequality, Service Accessibility, and Lived Experience

Abstract

In the summer of 2024, the National Leadership Consortium launched a statewide study to investigate the barriers and facilitators experienced by Washington residents with co-occurring intellectual and developmental disabilities (IDD) and mental and/or behavioral health support needs. The study centered the voices of people with lived experience, particularly those from historically underserved populations, including Black, Indigenous, and People of Color (BIPOC), individuals living in rural areas or on tribal reservations, LGBTQ+ individuals, and low-income families. The purpose of the study was to better understand systemic gaps and inform policy recommendations to advance equity and access across disability and mental health services. 

The study was framed in Critical Disability Theory and the Systems Alignment Framework from Burrow et al. (2021) to explore the barriers and potential facilitators in aligning IDD and Mental/Behavioral Systems. It follows a concurrent mixed-methods design with a qualitative inquiry drawing on focus groups and semi-structured interviews, and a quantitative inquiry strategy stemming from a web-based survey. Qualitative data was analyzed using thematic analysis. Survey data were analyzed using descriptive and inferential statistics., with logistic regressions conducted to explore the impact of the system's misalignment in people with co-occurring support needs from traditionally underserved groups versus the rest of the respondents. IRB-certified self-advocates participated in protocol design and conducted most interviews. There were 19 interview participants (primarily caregivers, including six from historically underserved populations), a focus group with nine self-advocates with co-occurring support needs, and 398 survey respondents. Recruitment was carried out in collaboration with local and state partners.   

Findings underscore deep inequities in service access, particularly for underserved populations. Respondents reported significant barriers including discrimination by providers, service ineligibility due to co-occurring needs, regional inaccessibility, and fragmented care systems. Disparities were most pronounced among underserved respondents, who were over three times more likely to say providers only “somewhat” respected their cultural background and nearly twice as likely to report financial and geographic barriers to care. Notably, only 17.2% of underserved respondents rated their services as “excellent,” and over one-third of all respondents expressed dissatisfaction. Thematic analysis revealed prevalent system navigation difficulties, caregiver burnout, and emotional harm from practices and providers lacking cultural sensitivity and humility. Participants described being "pushed out" of support systems, especially during the COVID-19 pandemic when services moved online leaving behind those with limited digital access. Despite these challenges, participants identified clear facilitators to better service access, such as peer mentorship, advocacy support, and trauma-informed providers. Participants' recommendations emphasized culturally responsive training, expanded mobile and telehealth services (especially in rural areas), better cross-system communication, and centering lived experience in policy and service design. 
This study reveals that systemic fragmentation across Washington’s disability and mental health services disproportionately harms people with co-occurring support needs, remarkably those from historically underserved communities. Policy implications include the urgent need for cross-system coordination, culturally responsive provider training, and integrated service planning that center lived experience. Expanding mobile and telehealth services, simplifying eligibility pathways, and involving underserved populations in policymaking are critical steps toward building an equitable, person-centered system of care. 

Author

• Caitlin Bailey, National Leadership Consortium on Developmental Disabilities
  Presenting Author