The Uphill Battle for Caregivers: Why We Need Your Voice to Transform Policy

Beyond the visible duties, employed caregivers often shoulder unique and immense burdens. From the intense demands of the 'sandwich generation' balancing children and aging parents, to the singular responsibilities of sole caregivers, these are the 'Hidden Truths' we're committed to bringing to light. It's time to acknowledge and support these often-invisible struggles. Join Professionals Who Care (PWC) and CASI as we advocate for policies that truly uplift every caregiver.

By Mark Fukae, Director of Advocacy for Professionals Who Care

Caring for Change Series

Every morning, I face the profound reality of caregiving. My 93-year-old mother, battling end-stage dementia, navigates a world that is rapidly fading for her. My days are a delicate balance of professional responsibilities and ensuring her comfort, safety, and dignity. This deeply personal journey, shared by millions across our nation, illuminates a frustrating truth: while our love and commitment as caregivers are boundless, the systemic support from our state and federal governments is often woefully inadequate.

Just last week, a poll I conducted on LinkedIn asked a crucial question to our community: "Do current laws adequately protect and support family caregivers?" The resounding answer from participants was a unanimous 'No.' This clear mandate from our community underscores the urgent need for reform. Despite the heroic efforts of families, passing the very laws that could lighten this immense load proves to be an uphill battle.

At Professionals Who Care (PWC) and CASI, we understand these struggles intimately. We’ve been tirelessly advocating for transformative legislation, like the Federal and Colorado CARE (Caregiver Accommodations & Rights Expansion) Acts. Yet, the path to enshrining caregiver protections and support into law is fraught with significant challenges.

The Roadblocks to Caregiver-Friendly Legislation

Several deeply ingrained issues hinder the progress of vital caregiver-friendly laws:

1. The "Private Problem" Perception: For too long, caregiving has been seen as a personal, familial obligation rather than a critical societal and economic function. This misperception allows policymakers to overlook its profound impact and delay public investment.

2. Invisible Workforce, Invisible Impact: Millions of unpaid caregivers perform indispensable labor behind closed doors. This invisibility makes it difficult to quantify their collective power and often leaves them without a strong, unified voice in legislative halls, compared to other well-organized interest groups.

3. Perceived Cost Over Real Investment: Lawmakers frequently fixate on the upfront budgetary costs of implementing new caregiver support programs—such as paid leave, tax credits, or employer incentives. They often fail to grasp the immense long-term economic benefits: increased workforce participation, reduced healthcare burdens from caregiver burnout, and a more stable economy.

4. Business Sector Resistance: Some business associations and individual companies may actively oppose new mandates, fearing increased operational costs or administrative complexity. While many progressive businesses understand the value of supporting caregivers, a vocal segment can significantly impede legislative progress.

5. Political Prioritization and Partisanship: In a crowded legislative agenda, caregiver issues can struggle to gain sufficient attention. Furthermore, what should be a universally appealing issue can sometimes become entangled in broader partisan debates about the role of government or social programs.

6. Complexity of Solutions: The diverse needs of care recipients (ranging from children with disabilities to aging parents with dementia) and the varied forms of caregiving make crafting comprehensive, equitable, and effective policies inherently complex.

Strategies to Combat and Overcome These Challenges

To break through these barriers and build the irreversible wave needed for change, we must adopt a multifaceted and persistent approach:

1. Transform the Narrative: Caregiving as Essential Infrastructure:

   • Economic Storytelling: We must clearly articulate the financial toll of unsupported caregiving on families, businesses, and the national economy. By framing the CARE Acts as vital economic investments rather than mere expenses, we can appeal to a broader range of political interests.

   • Universal Relatability: Emphasize that caregiving impacts everyone. We are all caregivers, have been cared for, or will need care. This broadens the appeal beyond specific demographics.

   • Media Amplification: Proactively engage with journalists, social media influencers, and public forums to highlight caregiver stories, legislative needs, and the tangible benefits of the CARE Acts.

2. Build Power Through Broad Coalitions:

   • Bipartisan Appeal: Frame caregiver support as a core bipartisan issue—appealing to conservative values of family and workforce stability, and liberal values of equity and social support.

   • Cross-Sector Alliances: Forge strong partnerships with healthcare providers, disability advocates, senior care organizations, labor unions, and especially, progressive businesses who champion caregiver-friendly workplaces.

   • Caregivers as Advocates: Mobilize caregivers themselves. Your personal stories, shared with lawmakers and the public, are the most compelling testimony. Organize advocacy days, letter-writing campaigns, and local events to ensure your voices are heard directly.

3. Strategic Engagement with Policymakers & Business Leaders:

   • Proactive Education: Continuously educate legislators and their staff on the nuances of caregiving and the specific, well-researched benefits of the CARE Act proposals. Anticipate and pre-emptively address their concerns about cost or complexity.

   • Employer Champions: Showcase businesses that have successfully implemented caregiver-friendly policies. Their testimonials can be powerful in countering resistance from other industry sectors.

4. Sustained, Multi-Level Action:

   • "Inside-Outside" Strategy: Combine direct lobbying efforts ("inside game") with robust grassroots mobilization ("outside game"). CASI's Change.org petition, social media campaigns, and public awareness initiatives build crucial external pressure that complements legislative negotiations.

   • State-by-State Momentum: Successes at the state level, such as the strides made in New York, California, Massachusetts, and Illinois in passing caregiver-friendly policies (like paid family leave or enhanced support programs), serve as powerful models. These demonstrated feasibilities, alongside potential future wins like the Colorado CARE Act, build crucial momentum for broader federal legislation.

   • Consistent Engagement: Remember Erica Chenoweth's 3.5% rule: sustained, nonviolent resistance from a dedicated few can lead to transformative change. Regular communication, ongoing calls to action (even small ones like emailing a legislator), and persistent visibility are key.

5. Foster a Partnership Culture (as per Riane Eisler):

   • Beyond policy, we must drive a fundamental cultural shift towards Riane Eisler's 'partnership society.' Here, care is recognized as a fundamental human capacity and a shared responsibility, moving beyond outdated notions of "women's work" or private burdens.

   • Both women and men must actively engage in building this partnership culture. This means challenging traditional gender roles in caregiving, ensuring workplaces support all employees with care responsibilities, and promoting media portrayals that reflect this shared reality.

The uphill battle for caregivers is real, but it is not insurmountable. With every voice raised, every story shared, and every signature added, we build an undeniable force for change. It's time to transform the landscape of care in America.

Your Voice is Crucial. Take Action!

Join PWC and CASI in this vital fight. Your support directly fuels our advocacy efforts and helps us push forward the Federal and Colorado CARE Act proposals.

• Sign the Petition: Help us reach our goal by signing CASI's petition on Change.org today! [Link to Change.org Petition]

• Support PWC and CASI: Learn more about our work and how you can contribute to Professionals Who Care (PWC) and the Caregiver Advocacy and Support Initiative (CASI). [Link to Professionals Who Care website] [Link to Caregiver Advocacy and Support Initiative on LinkedIn]

References

• Chenoweth, E., & Stephan, M. J. (2011). Why Civil Resistance Works: The Strategic Logic of Nonviolent Conflict. Columbia University Press.

• Eisler, Riane. (1987). The Chalice and the Blade: Our History, Our Future. Harper & Row.

• Ferrer, Liz Isidro. (2025, June 9). When no one is feeding families, watching children and caring for seniors, cities collapse. Planning must recognize that. Op-Ed.

• Tronto, Joan. (Political theorist, widely known for her work on the ethics of care, particularly as explored in her book Moral Boundaries: A Political Argument for an Ethic of Care).