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Legislating From a Distance: If They Had to Live It: Would Lawmakers Write the Same Bills?

  • Writer: Mark Fukae
    Mark Fukae
  • Jul 12
  • 7 min read
When the very lawmakers shaping our nation's policies are shielded from their daily consequences, caregiving families inevitably bear the heavy cost.
When the very lawmakers shaping our nation's policies are shielded from their daily consequences, caregiving families inevitably bear the heavy cost.

By Mark Fukae, Director of Advocacy for Professionals Who Care and Founder, Caregiver Advocacy and Support Initiative (CASI)


This article marks the debut of our new "Legislating From a Distance" series. Our "Hidden Truths" series has unflinchingly brought to light the systemic burdens on caregivers-from outdated workplace standards to the invisible labor shouldered by millions. As Professionals Who Care continues its unwavering commitment to actively transforming the care economy, this new series zeroes in on an even more insidious reality: the profound disconnect separating policy-makers from the lived experiences of the people their decisions directly impact.


My family's own journey has provided me a direct view into the intricate, often agonizing, realities of caregiving. My 93-year-old mother's battle with end-stage dementia offers a daily, poignant reminder of advanced care's profound personal demands. Simultaneously, my wife's mother has navigated the complexities of long-term care, from utilizing Medicaid in Oregon to managing Medicare in Colorado today. These diverse experiences, spanning different states and care levels, underscore how deeply policies intersect with individual resilience.


These personal narratives echo the words of a caregiver who once shared her impossible choice: juggling three part-time jobs alongside her mother’s dialysis appointments, she faced a SNAP benefit reduction that forced her to prioritize either food or medicine. The thought struck me with piercing clarity: Do those casting votes from Capitol Hill ever truly feel the immense weight of the choices they compel families to make; between groceries and vital medication, between sheer survival and preserving dignity? This series will challenge precisely that question.


Proximity as Policy: Why Lived Experience Must Guide Legislation


The landscape explored in our “Hidden Truths” series-where workplaces often cling to outdated models, ignoring modern family structures and current economic pressures; is far from theoretical; it constitutes the daily reality for countless caregivers. The pervasive lack of affordable care options, insufficient support systems, and the stubborn persistence of unrealistic workplace standards significantly contribute to caregiver burnout, severe financial strain, and systemic discrimination. A persistent query has always remained: How do we pierce through the political gridlock to enact meaningful, widespread change when the very individuals drafting these laws seem so utterly removed from the daily struggles?


"Proximity as Policy" signifies grounding legislation in genuine understanding-where the real-world impact on human lives, rather than abstract numbers or ideological principles, dictates decision-making. This approach stands in stark contrast to legislating from a "distance," which creates policies in an insulated vacuum. This challenge is magnified when we consider the vast number of Americans affected:

  • For instance, an astounding 53 million adults serve as unpaid family caregivers in the U.S. - an 18 percent increase since 2015 - meaning more than one in five Americans provide vital, unpaid family care [1]. This often unseen care was valued at an incredible $600 billion in 2021 [2].

  • Many of these families, or those they care for, rely on crucial social programs for survival and dignity. Approximately 41.7 million Americans, or 12.3% of the U.S. population, receive SNAP benefits monthly as of fiscal year 2024 [3, 4].

  • Furthermore, Medicaid provides health and long-term care coverage to 83 million low-income children and adults across the United States [5, 6, 7].


When policy is crafted without genuine proximity to these lives, the consequences become severe and often remain unseen from legislative chambers.


“Policy made with proximity listens. Policy made from distance dictates.”


The Rhetoric of Detachment: Unmasking Justifications for Cuts


Recent political discourse frequently frames essential social programs through a lens of suspicion, deflecting attention from their vital societal role. Legislators commonly justify sweeping cuts to programs like Medicaid and SNAP by presenting them as efforts to reduce “waste, fraud, and abuse” or to foster “personal responsibility” through work requirements.

This rhetoric, while appearing fiscally responsible, dangerously fosters distance:

  • "Waste, Fraud, and Abuse" as a Smokescreen: This broad, emotionally charged accusation often lacks widespread evidence, yet it effectively demonizes recipients and erodes public trust, making it easier to dismantle programs designed to protect our most vulnerable. While the USDA reported an estimated 11.7 percent of SNAP benefits paid in fiscal year 2023 were improper (about $10.5 billion of $90.1 billion) [13], it is crucial to understand that SNAP error rates are not fraud rates; payment accuracy errors are largely unintentional [12]. In fact, the most frequently cited measure of actual fraud - national retailer trafficking - estimated that only 1.5% of SNAP benefits redeemed from FY2012-FY2014 were trafficked [11]. This stark disparity between rhetorical claims and documented reality highlights the political manipulation of data.

  • "Personal Responsibility" as a Blaming Tool: This concept, while valuable in principle, is frequently weaponized to disregard systemic barriers. It often implies that individuals facing hardship are simply not trying hard enough. This directly clashes with the lived reality of caregivers, many of whom embody the most profound form of personal responsibility imaginable, yet cannot meet rigid "work requirements" or thrive under policies that offer no flexibility. As explored in "Hidden Truths #7: Discrimination Against Caregivers in the Workplace," this mirrors the "Ideal Worker Standard" bias, penalizing those whose lives do not conform to outdated models. The language employed in policy debates is never neutral; it actively shapes perception, distances us from empathy, and ultimately dictates who is deemed worthy of support.


The Human Cost: When Distant Policy Fractures Care


The true expense of this legislative detachment is paid by individuals and families on the ground. When programs like Medicaid face cuts, or SNAP benefits are reduced for those struggling to meet arbitrary work requirements while simultaneously providing 24/7 care, the impact is immediate and utterly devastating. Consider the ripple effect:

  • Increased Financial Strain: Without adequate support, families plunge deeper into poverty, leading to impossible choices between necessities like food, housing, and vital medical supplies. Indeed, 36 percent of caregivers for adults over 50 report moderate to high levels of financial strain [2], a direct consequence of policies that fail to provide adequate support.

  • Erosion of Well-being: Reduced access to care services exacerbates physical and mental health issues for both care recipients and caregivers, leading to burnout, chronic stress, and declining quality of life. The mental toll is significant, with the prevalence of lifetime depression among caregivers (25.6%) remaining markedly higher than among noncaregivers (18.6%) [8, 9]. Perhaps most starkly, elderly spousal caregivers experiencing caregiving-related stress face a chilling 63% higher mortality rate than noncaregivers of the same age [10].

  • Societal Fragility: Ultimately, undermining the social safety net weakens the entire community, as the burden shifts onto individual families, charities, or emergency services, which are inherently ill-equipped to handle the systemic gaps created by policy failures.


Our Path Forward: Policy Born from Proximity – Championing the CARE Acts


The clear answer to legislating from a distance is to legislate with proximity. This demands actively listening, deeply understanding lived experiences, and crafting policies that genuinely support rather than penalize. This philosophy precisely underlies the comprehensive solutions we advocate for at Professionals Who Care (PWC) and the Caregiver Advocacy and Support Initiative (CASI): the Federal and Colorado CARE Acts. These legislative proposals are meticulously designed to:

  • Bridge the Affordability Gap: Directly addressing the financial devastation families confront by making care more affordable.

  • Expand Home-Based Support: Recognizing the inherent dignity and proven effectiveness of care provided in familiar home environments.

  • Strengthen the Workforce: Ensuring that paid caregivers receive the fair wages and training necessary to sustain this vital profession.

  • Protect Assets: Preventing families from being driven into poverty simply to qualify for essential services. These Acts are not mere policy documents; they are comprehensive blueprints for a care economy built upon empathy, profound understanding, and true proximity to the realities they serve.


Call to Action


"If They Had to Live It"-this remains the essential question we must continuously pose to our lawmakers. The hidden truth is that policy crafted without proximity creates profound, often cruel, consequences for real people. Our fundamental task, as advocates and as a society, is to relentlessly demand that lawmakers close this distance.


This series, "Legislating From a Distance," will continue to explore the nuances of this disconnect, offering insightful perspectives and practical tools for effective advocacy. We firmly believe that by shining an unyielding light on these legislative blind spots, we can foster a profound cultural shift; one where policy is always forged in the crucible of human experience, never in ideological isolation.


Your Voice Matters. Take Action!


Your engagement is the absolute key to bridging this critical distance.


Data Sources / References

  1. AARP and National Alliance for Caregiving. "Caregiving in the U.S. 2020." May 2020.

  2. AARP Public Policy Institute. "Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers." March 2023.

  3. Center on Budget and Policy Priorities. "SNAP Participation and Benefits Data." 2024.

  4. USDA Food and Nutrition Service. "Monthly SNAP Participation Data." 2024.

  5. Kaiser Family Foundation. "Medicaid State Fact Sheets." May 2025.

  6. American Hospital Association. "Fact Sheet: Medicaid." February 2025.

  7. Medicaid and CHIP Payment and Access Commission (MACPAC). "MACStats: Medicaid and CHIP Data Book." December 2024.

  8. Centers for Disease Control and Prevention. "Changes in Health Indicators Among Caregivers - Behavioral Risk Factor Surveillance System, United States, 2015–2019." MMWR Weekly Report, August 29, 2024.

  9. National Alliance for Caregiving. "Caregiver Health." Updated July 14, 2021.

  10. Schulz, R., Beach, S.R. "Caregiving as a risk factor for mortality: the Caregiver Health Effects Study." JAMA. 1999;282(23):2215-2219.

  11. Congressional Research Service. "Errors and Fraud in the Supplemental Nutrition Assistance Program (SNAP)." Updated September 28, 2018.

  12. U.S. Government Accountability Office. "Improper Payments: USDA's Oversight of the Supplemental Nutrition Assistance Program." GAO-24-107461, June 2024.

  13. USDA Food and Nutrition Service. "SNAP Quality Control." Updated 2024.

 
 
 

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