590 - Access to Home and Community Based Services for Children with Disability

Poster Number: 590
Publication Number: 590.403

Carolyn C. Foster, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Tracie L. Smith, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; jennifer Gentile, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Margaret Storey, DePaul University, Evanston, IL, United States; Punreet Bhatti, n/a, Chicago, IL, United States; Matthew M. Davis, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Jenifer Cartland, Ann & Robert H Lurie Children's of Chicago, Chicago, IL, United States

Background: Home and community-based services (HCBS) help a person with a disabling chronic health condition participate in society. Previous literature describes general challenges that children with disability (CWD) face in accessing HCBS. How health care systems might prioritize and support access to HCBS remains unclear.

Objective: To describe provider- and parent-identified needs and barriers regarding access to HCBS for CWD, and their recommendations to improve access.

Design/Methods: Semi-structured interviews and focus groups were conducted with multidisciplinary providers and administrative staff (Nf25) from an independent children’s hospital. We then used the CWD algorithm to identify CWD who had received care in the past year. A stratified sample was created based on patient characteristics to identify English and Spanish-speaking parents of CWD (Nf1692), who were sent an electronic survey and received a $15 incentive. Parents confirmed their child still qualified as CWD, then answered questions about HCBS access, barriers, and impact. Survey responses were analyzed by parent/child characteristics with chi-squared statistics. Provider/staff transcripts and parent free text answers were analyzed for major themes.

Results: In our sample, 544 (response rate 31.6%) parents replied of which 382 reported their CWD was still affected. Characteristics of the diverse respondents and their CWD are shown in Table 1. Among parents of CWD, 283 (74.1%) reported their child needed a HCBS, most commonly therapy, school-based support, and case management services (Table 2). Two-thirds of parents reported at least one barrier to accessing HCBS and 1/3 experienced >3 barriers. The most common barrier type was knowledge/process (e.g., not knowing what to ask for) (37.8%), followed by eligibility/coverage (33.6%), and COVID-related pandemic (31.1%) (Table 3). No difference in barrier type or frequency was associated with specific parent/child characteristics. Qualitative analysis indicated that providers/staff and parents felt that inadequate HCBS access leads to developmental regression, poorer health, and educational disruption for CWD. Recommendations to health systems included better information sharing, expanded care coordination and social work, and improved access to family peer support.Conclusion(s): Providers and parents of CWD identified HCBS as important for CWD’s health, but lack of dedicated supports, insufficient information, and coverage or eligible concerns were primary barriers to HCBS access.
TABLE 1. Characteristics of Responding Parents and Participating Children with DisabilityNf382. Disability category and number were identified using the Children with Disabilities Algorithm (CWDA) with diagnostic codes (International Classification of Diseases,10th revision)
Table 2. Parent-Report of Home and Community Based Services Needed by Children with DisabilitiesShows proportion of parents of child with disability needed a service (Nf382), and percentage of parents reporting a barrier for each given service type.