Disability is defined by the World Health Organization’s (WHO) International Classification of Functioning, Disability, and Health (ICF) as impairments in body structure and function, activity limitations, and participation restriction which impact functioning at a number of levels (body, person, and societal).1 The proportion of children with disability (CWD) has increased from 2% to 8% of the pediatric population (0-18 years old) over the past 50 years.2 CWD face unique barriers to care leading to worsening health disparities, including insufficient access to medical equipment, devices, and therapy services but also financial and social hardship worsened by inaccessible housing and communities.3, 4, 5, 6

The WHO has clearly affirmed that participation in home, community, and educational life is fundamental to the health of all people.1, 7 Home- and community-based services (HCBS) are defined by the Centers for Medicare and Medicaid Services as person-centered care delivered in the home and community to address the needs of people with disabilities.8 HCBS span clinical and non-clinical labor (e.g., help with medications or bathing) to adaptive/assistive equipment.8 HCBS are, at their core, the health, educational, and social service supports that help children with disabling chronic conditions participate fully in society. Unfortunately, parents of CWD have reported general challenges accessing the HCBS needed to foster that participation.9, 10, 11

HCBS inaccessibility has potential ramifications not only on children’s participation in school and family life, but also on parents’ employment and health. Families of CWD are much more likely to require food and housing assistance and be under- or unemployed.12, 13 Moreover, research has demonstrated that families of racial and ethnic minorities are more negatively impacted by lack of HCBS, given that they may already be disadvantaged by lower income or systemic barriers to employment.14 Conversely, middle-income families may not be income-eligible to access HCBS services. Although certain income requirements can be waived through HCBS waivers, eligibility and access remain difficult.15, 16

While we know HCBS accessibility is a problem, we have an incomplete picture of the specific barriers driving inaccessibility and how the pediatric health system could be improved to enhance HCBS access from the perspectives of both pediatric providers and patients’ families. Additionally, while previous studies have evaluated specific barriers to individual services like therapy or equipment, few have considered child access to HCBS as a whole and its effect on a child and their family.

Given that a sizable portion of CWD healthcare is initiated and received at academic institutions, our project aimed to understand the role pediatric academic institutions play in facilitating access to CWD’s needed HCBS and their challenges obtaining HCBS. By understanding the underlying difficulties families and providers face in obtaining HCBS for CWD, we can use parent and provider recommendations to develop new mechanisms to ensure appropriate, equitable access to HCBS for all patients.