Advocacy 101: A Journey of Heart and Voice in Caregiving and Advocacy

This month’s advocacy column is a look into the intersection of caregiving and advocacy. It is a little longer that usual, as I write not just from the perspective of an advocate, but also from my personal perspective as a caregiver for my family members. My hope is to share some of my experiences and tie those into the larger issue of advocacy. I also hope that what I share can serve as a small glimpse of encouragement to those who also share this journey.

Caregiving is something that I grew into, not something that I planned for. It all began with a need. In my case, it was an aging parent that required support as well as a child who requires ongoing care. Over time, it has become part of the rhythm of my daily life. For me, most days are filled with supporting basic needs such as meals and household chores, while other days add the challenge of managing multiple schedules, medical appointments, and transportation to all these things. There are routines that help: scheduled care, familiar patterns, respite, and other supports that make daily life possible. Eventually, a complex, yet fragile system has taken shape—one that is not perfect, but strong enough to hold. A routine has formed, a structure built, and I’ve learned over the years how to make things work through first-hand experience.

Along the way, I’ve noticed something else. Something that is subtle, yet central amidst the routine—that providing care is only one part of the role. Understanding and navigating the systems that support that care has become just as important. I often think about how different my days would look if care came with guarantees and the sense of stability that allows caregiving to be sustainable.

It is also what makes any disruption to caregiving so impactful.

Family caregiving is slowly becoming a national crisis, with roughly 59 million Americans providing an estimated $1.01 trillion worth of unpaid labor annually, according to AARP’s Valuing the Invaluable 2026 Update. Data from the benchmark Caregiving in the U.S. 2025 report (a joint project by AARP and the National Alliance for Caregiving) shows that this “invisible workforce” spends an average of 22 to 27 hours a week managing complex medical tasks and navigating severe financial strains, often sacrificing their own personal savings to cover costs.

The emotional and physical toll is also immense, with nearly two-thirds of caregivers reporting high stress and 1 in 5 rating their own health as fair or poor. Compounding the issue, 2025 data reveal that nearly half of these caregivers belong to the “Sandwich Generation,” simultaneously raising children and caring for aging parents, which forces many to cut back work hours or leave their jobs entirely to stay afloat.

Seeing this data is often where advocacy begins. Not in a formal setting, but in the gap between understanding what is needed and what is provided. It begins when something no longer aligns with reality, and a caregiver is faced with the question of what to do next.

For many families, the answer lies in understanding a foundational piece of the system: Medicaid. While Medicare is widely recognized, it does not cover long-term care and supports in the way most people expect. Medicaid is the primary program that funds ongoing support, including assistance with daily activities, in-home caregiving, and services that allow people to remain in their homes and communities. For older adults and people with disabilities, it is often the program that makes independence possible.

One of the important advocacy lessons is simply understanding which systems are responsible for the care a family depends on. When that connection is clear, it becomes easier to recognize how policy changes can show up in everyday life.

Right now, Medicaid is under increasing pressure. Federal policy changes are expected to reduce overall funding over time, which may lead states to adjust how they administer their programs. Since Medicaid is managed at the state level, these adjustments are often gradual and localized. They may include tighter eligibility rules, reductions in optional services such as home-based care, or lower reimbursement rates for providers, which can affect caregiver availability.

For individuals and families, these types of changes rarely feel like policy decisions. Instead, they appear as shifts in routine: a reassessment notice, fewer hours of care, longer wait times, or difficulty securing consistent support. This leads to another key advocacy principle: policy is experienced through daily life. When something changes in the system, its impact is felt at home.

Understanding impact is also another essential advocacy insight. A small reduction in service hours may appear manageable in theory, but in practice it can disrupt carefully balanced routines. It may affect a caregiver’s ability to work, attend appointments, or simply rest. Often, the difference is absorbed quietly, as caregivers adjust their schedules and responsibilities to fill the gap.

Advocacy begins with recognizing when those adjustments are no longer sustainable and knowing that there are appropriate ways to respond and one of the most practical steps is to request clear, written communication whenever services are changed. A written notice provides an explanation of what is happening, why the decision was made, and what rights are available. It serves as a starting point for any next steps and ensures that decisions are documented.

Another important action is requesting a reassessment if the decision does not reflect current needs. Assessments are intended to capture a person’s situation, but they are not always complete or accurate. Requesting a reassessment is a way to ensure that the system reflects the full reality of a person’s condition and support requirements.

Filing an appeal is another advocacy tool that becomes important in this process. While it may feel complex, an appeal provides an opportunity to review and potentially change a decision. There are usually strict deadlines, often within 30 to 60 days, and meeting those deadlines is essential. In some cases, services may continue during the appeal process, which can help maintain stability while the issue is addressed.

Maintaining simple records can also strengthen advocacy efforts. Keeping track of dates, names, and key details from conversations creates a clear timeline and can help clarify misunderstandings if they arise. It does not require extensive documentation—just consistent attention to what is being communicated. For me, while it is a lot of paperwork, the key is to keep things organized.

As these skills develop, another important understanding tends to follow—individual experiences are part of a larger system. Decisions about programs like Medicaid are made at the state and federal level and are influenced by a range of factors, including budget priorities and policy goals. However, the lived experiences of caregivers and people receiving care are a critical part of that conversation. Advocacy, in this broader sense, does not require specialized knowledge. It can begin with sharing an experience explaining what a certain level of care makes possible, or what happens when that care is reduced. These perspectives provide context that numbers alone cannot capture. One of the first columns I wrote about was about the power of “sharing your story.”

Caregiving already requires a high level of adaptability and resilience. Incorporating advocacy into that role may feel like an additional responsibility, but it can also serve to protect the systems that make caregiving sustainable. Understanding how decisions are made, asking questions when something is unclear, and responding when something does not align with real needs are all part of that process.

For families caring for multiple generations and navigating complex needs across different stages of life, the connection between policy and daily life becomes especially clear. The supports in place are not static; they are shaped by decisions that continue to evolve.

For those beginning to learn about advocacy, the starting point does not need to be complex. It can begin with awareness. Paying attention to how decisions are communicated, asking for clarification, and keeping track of key information are all meaningful steps. Over time, these actions build confidence and create a stronger ability to respond when changes occur.

And perhaps most importantly, advocacy is something that grows. It builds with each phone call, each question, each moment you decide to speak up instead of stepping back. It builds when caregivers realize that their experience is not just personal, it is valuable and deserves to be heard.

Caregiving will always require strength. Advocacy adds something just as important: a sense of direction. It reminds caregivers that they are not simply reacting to a system they are learning how to shape how that system responds to them.

You do not need to have all the answers to begin. You only need to be willing to notice what matters, trust your experience, and take one step forward. Over time, those steps add up to more confidence, more clarity, and a stronger voice not just for your own family, but for others walking a similar path. So to every caregiver reading this: Your labor of love is seen, your voice has power, and the dedication you bring to your family every single day is nothing short of extraordinary. Keep moving forward, one day at a time.

Joel Domingo is chair of the Advisory Council’s Advocacy Committee and Dean of the Research Institute and director of Research and professor at City University of Seattle, where he leads the university’s overall scholarship and research objectives. His work focuses on leadership development and civic capacity building for creating social transformation in the public and community nonprofit spheres.