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Approximately 1 in 4 US adults lives with a disability. Another sizable portion of adults provide care to parents, partners, children, and other loved ones with disability. Coping with and providing care for disability often complicates employment and leaves employees feeling stressed, misunderstood, unsupported, or even discriminated against.
While workplace inclusion initiatives have often centered on race, gender, or generalized disability access, few efforts focus specifically on the lived experience of employees actively navigating disability-related caregiving or disclosure challenges. Fewer still address how those needs differ across the lifespan, from early childhood through aging adulthood, and how these issues intersect with HR policy, culture, and retention strategy.
This project addresses the question: “What do employees who are navigating disability, or caring for someone who is, need from their employers?” By capturing both exemplary practices and areas of struggle, this research will contribute to improved HR practices, workplace cultures, and, ultimately, more human-centered employment systems.
Researchers
Dr. John Andresen
Dr. John Andresen is the Director of Interdisciplinary Training at the Indiana Institute on Disability and Community.
Andresen’s background is in education, working as a junior high school special education teacher for 4 years. His research includes many areas surrounding the transition to adulthood for individuals with intellectual disabilities, focusing on Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) programs across the nation. Specifically, Andresen’s research is interested in the impact of these programs on students’ long-term employability.
His research examines:
- Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID)
- Employment for Individuals with Intellectual Disabilities
- Teacher Education
- Disability Policy Advocacy
Dr. Mariella Arredondo
Dr. Arredondo is an Associate Research Scientist with the Center on Education and Lifelong Learning at the Indiana Institute on Disability and Community (IIDC), Indiana University. A qualitative and mixed-methods researcher, her work spans education, disability, and workforce systems, with a focus on how institutions translate policy into practice—and how those processes shape access, opportunity, and belonging.
Dr. Arredondo plays a leadership role in advancing applied, systems-focused research at IIDC. She contributes to a federally funded State Personnel Development Grant (SPDG), where she supports leadership development and drives the translation of research into actionable tools and frameworks for school and district leaders. She also serves as qualitative lead on an institute-wide mixed-methods study examining disability and caregiving, guiding multi-stakeholder inquiry and implementation-focused analysis.
Her research agenda centers on systems transformation, including school discipline reform and disability employment. Building on national research on discipline disparities and LGBTQ+ people of color, her work informs policy and practice by examining how inequities are produced—and can be disrupted—across race, language, disability, sexual orientation and gender identity, and other intersecting dimensions.
Grounded in a Ph.D. in Educational Policy Studies with a concentration in International and Comparative Education, Dr. Arredondo brings a transnational perspective shaped by academic training and lived experience across countries, languages, and cultural contexts. She approaches U.S. systems within broader global patterns of institutional change, centering the relationship between policy, organizational practice, and lived experience.
Across her work, Dr. Arredondo positions research as both a tool for rigorous inquiry and a lever for meaningful systems change.
Katie Herron, PhD
Katie Herron, PhD is the Director of the Early Childhood Center (ECC) at the Indiana Institute on Disability and Community at Indiana University. Dr. Herron has a background in Clinical Psychology and completed her PhD in a program emphasizing research and family relationships. Her focus shifted to disability and early intervention during graduate school when her son was born with a disability. Since then, she has worked within Indiana’s early intervention system in multiple roles and as part of a grant to train families to become effective advocates.
Since starting at the ECC in 2013, she has focused on partnering with local, regional, and state systems to improve the quality of early intervention and early education using evidence-based family-centered practices, including promoting high-quality family engagement, high family expectations for young children with disabilities, and the importance of infant/early childhood mental health.
Mary Pearson, PhD
Mary Pearson Ph.D. is an assistant research scientist at the Indiana Institute’s Center on Community Living and Careers (CCLC).
Dr. Pearson’s work experience has centered on transition for students with disabilities from middle and high school to post-school life. She taught as a special education teacher of students with higher level intervention needs and served as a teacher coach to teachers working with middle and high school students involving all types of abilities. She has trained new teachers at five universities, was a GED instructor at two community colleges, and has taught at a postsecondary community college program for adults with disabilities. She has work, volunteer, and research experience with community services, job assessment and training services, and advocacy and support agencies.
Her research has focused on customized employment for those with higher level intervention needs, transition assessment and practices, improving inclusion during transition, and improving training for teachers of all students.
The Indiana Institute on Disability and Community (IIDC), Indiana’s University Center for Excellence in Disabilities, has fostered a foundation of excellence for community investment in developmental disabilities since 1970. Our mission is to work with communities to welcome, value, and support the meaningful participation of people of all ages and abilities through research, education, and service.
The institute is one of 68 independent but interlinked entities known as University Centers for Excellence in Developmental Disabilities (UCEDD). This national network represents an expansive national resource for addressing issues, finding solutions, and advancing research related to the needs of individuals with disabilities and their families.
The institute performs a set of four core functions:
- Interdisciplinary pre-service preparation and continuing education;
- Research, including basic or applied research, evaluation, and public policy analysis;
- Information dissemination; and
- Community services, including training, technical assistance, and model demonstration.
IRC® + IRC4HR® Project Publications and Learning Materials
The deliverables of this project will include a findings report with detailed thematic and statistical insights as well as a recommendations brief outlining
- Training topics (e.g., disclosure, accommodations, stigma reduction).
- Formats (interactive workshops, e-learning, peer forums).
- A roadmap to equip HR and leadership on disability across the lifespan.
- Guidance on building asset-based, disability-positive cultures.
These outputs are specifically designed to be the first step in developing relevant and practical strategies for HR professionals and company leadership to enhance workplace inclusion, engagement, and performance.
Project Details
Disability and caregiving impact a significant portion of the workforce. Approximately 1 in 4 US adults lives with a disability. Disability is also dynamic and evolving; many individuals acquire disabilities over time due to injury, illness, or aging. In parallel, about 1 in 4 Americans provides unpaid care to a loved one with a disability or chronic condition, making caregiving a significant workforce issue.
The remote and hybrid work arrangements required by the COVID-19 pandemic dramatically expanded opportunities for people with disabilities by reducing commuting barriers, improving health management, and creating greater control over workplace environments.
After the pandemic, many employers have reinstated or strengthened return-to-office mandates, requiring employees to be physically present on site for most or all of the work week. While often framed as efforts to rebuild culture, collaboration, and oversight, these mandates can create disproportionate barriers for employees with disabilities. Additionally, caregivers may lose vital flexibility under these attendance requirements.
These dynamics not only affect individual well-being but also directly impact workforce retention, as employees with disabilities and caregivers are more likely to report dissatisfaction and seek alternative employment when flexibility is denied.
By 2024, U.S. Surgeon General Dr. Vivek Murthy declared parental stress a public health concern, with nearly 50% of parents reporting that they feel overwhelmed on most days. These challenges are significantly magnified for working parents caring for either children with disabilities or elderly relatives. They face increased psychological stress, financial strain, inconsistent or inaccessible childcare, and a lack of social support. These working parents are also more likely to miss work or leave the workforce altogether due to:
- Difficulty navigating early intervention systems and services.
- High suspension and expulsion rates for young children with disabilities in preschool settings.
- A lack of understanding or flexibility from employers and supervisors.
These same systemic stressors persist throughout the lifespan and across different employee identities. For example:
- Employees with disabilities, including those who are neurodivergent, often struggle with unwritten rules of workplace culture. They may not feel safe disclosing their disability or may be uncertain how to access accommodations without stigma.
- Employees with “invisible” disabilities, such as chronic illness or mental health conditions, frequently report feeling misunderstood, marginalized, or penalized when they need time off, workspace adaptations, or schedule flexibility.
- Employees who care for aging adults report lacking supervisor understanding and fear workplace stigma or retaliation for requesting flexibility, leading to reduced hours, missed advancement opportunities, or even job loss.
Technology, including the burgeoning use of AI, has the potential to improve access to the workforce for individuals with disabilities. However, the introduction of workplace technology rarely includes meaningful foresight about how these technologies can support individuals with disabilities.
HR professionals and company leadership may require support in building a company culture that is inclusive of individuals with disabilities and caring for family members with disabilities throughout their lifespan. For example, Universal Design provides a template to ensure that the deployment of technologies is carefully monitored and designed to provide access and safety for individuals with disabilities.
This year-long project will conduct a needs assessment to understand what HR professionals need to support employees with disability-related challenges. It will serve as the essential first step in designing policies and practices that proactively support inclusion, reduce burnout, and strengthen retention among a diverse workforce affected by disability across the lifespan.
The project consists of three phases:
- Qualitative Phase – Conduct interviews and focus groups across a wide spectrum of employees with disabilities, employed caregivers, HR professionals, business leadership, and organizations recognized for excellence in disability inclusion.
- Quantitative Phase – Develop and distribute surveys informed by themes discovered and developed in the qualitative phase.
- Analysis & Integration – Organize and analyze qualitative and quantitative data, then integrate findings and develop and disseminate results.
We expect the research team to share its results and findings in April 2027.
