The Invisible Castes: Why Caregivers and the Disabled Deserve More Than the Shadows – A National Imperative, Building on Progress in States Like Massachusetts, New York, Illinois, and California.

The Invisible Castes: Why Caregivers and the Disabled Deserve More Than the Shadows – A National Imperative, Building on Progress in States Like Massachusetts, New York, Illinois, and California.

By Mark Fukae | Director of Advocacy for Professionals Who Care

Life changed fundamentally for me in 2019 when my mother was diagnosed with dementia. Suddenly, I wasn't just a full-time employee; I became a full-time caregiver. The onset of the COVID-19 pandemic in 2020 intensified this dual role, making the balancing act even more precarious. While I was fortunate to receive temporary accommodations from my employer for a couple of years, the shift back to a mandatory Return-to-Office policy in 2024 starkly highlighted a harsh reality: working caregivers like me exist in a legislative blind spot.

This experience, and the stories I hear every day through my work with Professionals Who Care and my own initiative, CASI, has led me to a difficult conclusion: in the eyes of our current systems and, too often, in the workplace, both people with disabilities and the caregivers who support them are treated much like a discriminated caste.

It's a strong word, "caste." It evokes a sense of a rigid social hierarchy where certain groups are systematically disadvantaged, marginalized, and denied opportunities based on who they are or, in this case, who they care for. While we have made progress, particularly with the disability rights movement leading to critical legislation like the Americans with Disabilities Act (ADA), the fight for true equity and inclusion is far from over for the millions of Americans living with disabilities. Systemic barriers persist, limiting access and opportunity in countless ways.

Adding to this complex picture is the perspective shared by William Harkness, who speaks of a "disability caste system" where "disability inclusion has become a polished narrative." As Harkness points out, beneath the curated posts and celebratory campaigns is a "far messier, more painful reality: there is a hierarchy of whose disabilities are accepted, accommodated, and elevated, and whose are quietly erased." This hierarchy isn't just imposed from the outside; it can exist within our own spaces, sustained by "silence, convenience, and the illusion that progress can be achieved without disruption."

This critique resonates deeply when we consider the over 32 million professionals in America who juggle their jobs with providing essential care for loved ones [1]. Like the disabled individuals whose needs are "quietly erased" because they don't fit the mold of who is deemed "disabled enough" or whose accommodations are inconvenient, these millions of caregivers find themselves in a similar predicament. Their needs are often invisible, inconvenient, and routinely erased from the workplace narrative. This is the "silent crisis" we talk about at Professionals Who Care – the unique needs and strengths of informal caregivers hidden in the shadows of the workplace because supporting them often requires the very "disruption" that systems avoid.

The urgency of this "silent crisis" is amplified exponentially by current challenges facing families not just in Colorado, but across the entire nation. As pandemic-era protections have ended, millions of people across the U.S. are losing their health insurance through the Medicaid unwinding process, with over 25 million disenrolled nationally [2]. This national crisis in healthcare access is directly impacting families, pushing the responsibility for care onto informal caregivers as formal support systems contract. Here in Colorado, this national trend manifests starkly, with 108,000 Coloradans projected to lose coverage [3] and the state facing a projected significant fiscal gap, estimated by some analyses to total billions over the next five years [4]. This isn't just about numbers; it's about people like my wife's mother, Margaret, who is navigating the healthcare system now, entering it precisely at a time when access is shrinking for so many others. As individuals lose access to formal care services due to these widespread Medicaid changes, the burden of providing essential support – from navigating appointments to daily personal care – will inevitably increase for family caregivers nationwide and right here in our state. This places immense new pressure on families at a time when both state and federal systems are least equipped to provide alternative support.

This precarious national and local situation makes the Colorado CARE (Caregiver Accommodation & Rights Expansion) Act not just important, but absolutely imperative. When millions nationally and over a hundred thousand Coloradans lose coverage, their care needs don't disappear; they shift onto families. If working caregivers are then forced to choose between their jobs and providing that essential care due to a lack of workplace accommodation, they lose income (caregivers nationally lose an estimated $522 billion in wages annually [5]), employers lose talent, and states potentially lose taxpayers, potentially increasing the strain on public assistance programs. The economic value of unpaid caregiving nationally is staggering, estimated at $600 billion annually [6] – labor that prevents further overwhelming of formal healthcare and long-term care systems nationwide. Penalizing these essential contributors is illogical and unsustainable, both nationally and in Colorado.

The disparity in national legislation is glaring. We have laws like the ADA, which prohibits discrimination against individuals with disabilities and includes provisions against discrimination based on association with a disabled person. However, ADA's associational discrimination protections generally don't extend to requiring employers to provide accommodations for the non-disabled caregiver's needs [7]. You can't typically demand a flexible schedule under ADA just because you care for someone with a disability, even if that flexibility is essential to providing that care.

Then there's the Family and Medical Leave Act (FMLA). FMLA offers eligible employees unpaid leave (up to 12 weeks for most caregiving needs) to care for a qualifying family member [8]. While critical, FMLA is about leave, not ongoing accommodation. It doesn't help the caregiver who needs a modified schedule, remote work options, or other adjustments to remain actively employed and productive while integrating care into their daily life. It's a temporary pause, not a sustainable solution for long-term caregiving responsibilities. This patchwork of insufficient national laws reinforces the idea that caregivers, and the specific needs tied to their role, are not central to our legal framework – they are part of the erased reality beneath the polished surface of "employee support."

This legislative gap leaves working caregivers vulnerable nationwide. We are disproportionately impacted, facing employment discrimination, lost wages, missed career opportunities, and profound isolation. This isn't just a personal problem; it's a drain on our national economy and a strain on our social fabric.

Part of this systemic blindness in policy may also stem from who holds legislative power and their lived experiences. Caregiving, particularly the intensive, hands-on tasks, has historically and statistically fallen more heavily on women. If a significant portion of male legislators haven't personally experienced the daily demands of managing a loved one's complex health needs alongside a full-time job, it can be harder for them to grasp the urgency and necessity of workplace protections, both at the state and federal level. Bringing these experiences into the legislative chambers, showing that caregiving impacts families across all demographics, including men, is crucial for building the empathy and understanding needed for our bills to pass. Representation matters, not just in who sits in the seats, but in whose realities are understood and prioritized beyond the polished narrative.

Looking at this through the lens of cultural anthropologist Riane Eisler's work offers a deeper understanding of these systemic issues. Eisler distinguishes between "dominator" and "partnership" models of social organization. A dominator model is characterized by hierarchy, control, and valuing power over, often devaluing anything perceived as "soft" or nurturing, which historically includes care work. In this model, those needing care or providing it unpaid are easily pushed to the margins, seen as dependents or burdens on the "productive" (paid) workforce. The current national and state legislative landscape, where caregivers lack fundamental protections and face discrimination, reflects elements of this dominator structure – power dynamics that devalue care and those associated with it, contributing to the "caste system" Harkness describes.

Our work here in Colorado is vital because state-level action can be a powerful catalyst for national change. We are not starting from scratch; we are building on the foundation laid by other states across the country. States like Massachusetts, New York, Illinois, and California have already enacted various forms of caregiver workplace protections or anti-discrimination laws that are currently active [9]. Colorado's effort to pass the CARE Act joins this growing national movement, demonstrating the increasing recognition of this critical issue and the viability of state-level solutions. By passing our bill, we can provide a clear blueprint and further demonstrate the feasibility and positive impact of such legislation, building momentum for similar efforts in other states and strengthening the case for a comprehensive Federal CARE Act.

Our goal is clear: recognize caregivers as a protected class and establish a statutory right to reasonable workplace accommodations, just as employees with disabilities have. We've designed the Colorado CARE Act proposal with fiscal responsibility at its core, proposing a dedicated, graduated fee-based fund with a TABOR exemption and a phased implementation, demonstrating that supporting caregivers is a smart, long-term investment, not a burden, especially when the state faces significant fiscal challenges and its residents are losing critical health coverage.

Ending the "caregiver caste" means acknowledging the vital work that millions do every day and ensuring they are not forced to choose between their livelihoods and caring for their loved ones. It means demanding that the narrative of inclusion moves beyond curated posts to address the messier, real-life needs that require systemic disruption and legislative change. It's time to bring caregivers out of the shadows and provide the legislative protections they have long deserved. The national crisis in healthcare access and the progress in other states only underscores how IMPERATIVE legislative solutions like the Colorado CARE Act are, serving as a vital step in a nationwide fight for caregiver rights.

Call to Action:

Follow Professionals Who Care at professionalswhocare.org. Sign the petition at Change.org and have your voice heard. Support non-profits through volunteerism or even donating in this time of need. Your action is imperative if you care or are one of the millions of unpaid or paid caregivers holding families and our systems together.

Kindly,

Mark Fukae  | Director of Advocacy for Professionals Who Care

Sources:

[1] Based on national estimates of caregivers with employment. See, e.g., AARP and National Alliance for Caregiving, Caregiving in the United States 2020; Rosalynn Carter Institute for Caregivers, "Invisible Overtime" (2022). [2] Kaiser Family Foundation (KFF) and Center on Budget and Policy Priorities (CBPP) tracking of Medicaid unwinding data. [3] Based on projections related to Colorado Medicaid changes. See, e.g., reporting citing analyses by Urban Institute/Robert Wood Johnson Foundation. [4] Based on analyses of Colorado's state budget challenges and projections for future fiscal years. See, e.g., reports by The Bell Policy Center or Colorado Legislative Council Staff. [5] Rand Corporation estimate cited in reports on the economic impact of caregiving. See, e.g., Trualta blog post citing Rand data. [6] AARP, Valuing the Invaluable report series (2023 update). [7] U.S. Equal Employment Opportunity Commission (EEOC) guidance on Association Discrimination under the ADA; analyses by organizations like the National Women's Law Center or WorkLife Law. [8] U.S. Department of Labor, Wage and Hour Division, Fact Sheet #28: The Family and Medical Leave Act (FMLA). [9] Refers to various state and local laws prohibiting discrimination based on family responsibilities or caregiver status, or providing specific caregiver leave rights beyond federal FMLA. See, e.g., information compiled by WorkLife Law or State Innovation Exchange.