In this powerful episode of The Advocacy Life, Kevin G. Nunez addresses recent alarming statements made by Secretary of Health and Human Services, Robert F. Kennedy Jr., regarding Home and Community-Based Services (HCBS). Kevin breaks down why the suggestion to eliminate pay for family caregivers is not only dangerous but a step toward “building smaller prisons” instead of true community inclusion.
In this episode, we discuss:
The Reality of Care: Kevin shares his personal experience living with Cerebral Palsy, requiring total care, and the necessity of support for daily living.
A History Lesson: Remembering how RFK’s own father exposed the “snake pits” of institutions like Willowbrook in 1975.
The Economic Argument: Why HCBS is more cost-effective for society than institutionalization.
Human Rights over Fraud Prevention: Why punishing millions of families to catch “waste” is a “short-sighted” policy that robs Americans of their right to dream.
“Don’t lock the doors from the inside. Everyone deserves the chance to walk through.
History has a strange way of looping back on itself. In 1965, Robert Kennedy Sr. visited the Willowbrook State School and called it a “snake pit.” He saw children living in filth and rags, and his outrage helped spark a revolution. It led us away from the dark halls of institutions and toward the light of the community.Fast forward to last week. His son, HHS Secretary Robert F. Kennedy Jr., stood before Congress and took issue with Medicaid paying family caregivers.
He called these programs “rife with fraud,” suggesting that family members are getting paid for things they “used to do for free,” like driving a loved one to the doctor or picking up groceries.
As an advocate who has spent my life navigating the space between policy and reality, I have one thing to say: Independence isn’t free, and it isn’t fraud.Home and Community-Based Services (HCBS) are not a luxury. They are the vital lifeline that allows 8.4 million Americans with disabilities to live in their own homes rather than the institutions the senior Kennedy once decried.
When Secretary Kennedy suggests that families should just do this work “for free,” he is ignoring the economic reality of 2026. Providing care is a full-time job. When a family member becomes a caregiver, they often have to leave the traditional workforce.Being
Being paid through a Medicaid waiver isn’t a “get rich quick” scheme; it’s what keeps that family out of poverty.We are in the middle of a massive shortage of direct care workers. Often, a family member is the only person available to do the job.If these family-led supports are cut, where do people go? Back to nursing homes and institutions.Those facilities cost taxpayers far more than HCBS and, as history has shown us, they often rob us of our dignity.
In my book, Beyond What You See, I wrote that “Life begins beyond what you see.” What the Secretary sees as “balancing a checkbook” is actually the maintenance of a human life.Disability doesn’t have a political party. It doesn’t care about your skin color. As I’ve said before, disability is America. We are an example of hope and endurance, but that endurance is tested when the people in charge of our healthcare look at our support systems as “waste, fraud, and abuse” rather than “justice, dignity, and freedom.The
The current administration and the disability community cannot be enemies. We must be allies. To Secretary Kennedy, I say this: Do not let the legacy of Willowbrook be forgotten. Do not dismantle the very systems that allow us to reach for the stars—not because it’s easy, but because it’s hard, and because it is the right thing to do.America is made great when we learn from our past. Let’s not repeat the mistake of undervaluing the lives of the disabled.
For many, the American Dream is built on a foundation of opportunity and the freedom to grow. But for the one in four New Jersey residents living with a disability, that dream is often deferred by a “hidden tax” that drains both bank accounts and spirits. I am a 38-year-old advocate with a developmental disability, and while I love this country and its potential, I often feel like I am financially suffocating.
Living with a disability means ordinary tasks—like grocery shopping or attending a doctor’s appointment—come with added economic burdens. Research shows that U.S. households with a disabled member need approximately 29% more income to maintain the same standard of living as those without. At a median income, that’s an extra $18,322 per year just to keep pace.
Accessible Vehicles: Often costing upwards of $60,000.
Power Wheelchairs: High-end, necessary chairs can cost as much as $26,000 to $50,000.
The most frustrating barrier to financial independence isn’t just the high cost of living; it’s the outdated policy that keeps us in poverty. To maintain essential Medicaid-funded personal care, many must stay below the poverty line.
For decades, the Supplemental Security Income (SSI) asset limits have been frozen. Since 1983, an individual is capped at $2,000 in their bank account, while a married couple is limited to $3,000. This “marriage penalty” and the inability to save for the future means we are effectively barred from the wealth-building tools—like stocks or significant savings—that other Americans rely on.
Beyond the dollars and cents, there is a heavy “time tax.” My colleague Javier Robles, Director of Kinesiology and Health at Rutgers University, highlights how this shapes every decision.
Whether it’s paying more for a guaranteed accessible hotel or the hours spent researching destinations only to find “accessible” promises aren’t met, the stress is constant. Javier famously recalled a trip to Italy where he had to be carried onto a boat by firefighters because the promised accessibility was non-existent.
As Javier puts it:
“Being disabled means that you often pay more or you do without or you miss out on a lot of things because you can’t afford them or they’re inaccessible to you.”
We need to move beyond complex workarounds like ABLE accounts or Special Needs Trusts, which can be restrictive. True advocacy means fighting for systemic change—like raising the individual asset limit to $10,000.
New Jersey has taken steps with updated Workability programs, but implementation remains slow. It is time to ensure that all Americans, regardless of ability, have the freedom to contribute to the economy and build a secure future. Without financial freedom, the “Land of Opportunity” remains out of reach for millions. Keep on rolling. Keep on Living.
Description:What exactly makes people uncomfortable about disability? Often, it’s because society only sees the “cute and cuddly” version of our lives. In this episode of The Advocacy Life Podcast, we’re breaking that mold.I’m talking about the power of full exposure. To bridge the gap in understanding, people need to see the raw, unfiltered reality of disability—not just the triumphs, but the struggles, the financial hurdles, and the everyday resilience required to navigate a world that wasn’t built for us.In this episode, we discuss:New Year’s Resolutions: I’m sharing an update on my goal to finish my next book draft by March and have it out by December 2026! How are your resolutions holding up in mid-February?The Exposure Method: Why showing the “uncomfortable” parts of disability is the only way to create true empathy and change.Existence vs. A Full Life: There is a massive difference between just “experiencing” life and actually living it. We explore how to find value in every moment.The Price of Advocacy: Why being a leader means being willing to be the first one to step into the fire.Universal Truths: Disability and death are the only two certainties in life. It’s time we stop hiding from them and start talking about them.We are all part of the same human story. Let’s stop wasting time and start living with purpose.📍
TIMESTAMPS:0:00 – Introduction: What makes people uncomfortable?1:50 – New Year’s Resolution Update (Book 2026!)4:10 – Why we need to “Expose” Disability9:30 – Moving past the “After-School Special” version of our lives14:00 – The burden and beauty of being an Advocate19:45 – Living a Full Life vs. Just Existing24:00 – Final thoughts: Don’t waste your life.
Apologies that this entire post is in one paragraph. There was some sort of glitch to like fix it.
What are you afraid of?”It’s a question that feels like it belongs on a high-stakes reality show, but for those of us navigating the advocacy world and the disability community, it’s a question we live with every single day. We often feel pressured to be the “fearless” leaders, the ones who always have the answers and never let the weight of our diagnosis or our circumstances pull us down.True strength isn’t about the absence of fear; it’s about the courage to be vulnerable despite it.I found myself watching the new season of Fear Factor. Watching people face physical challenges made me reflect on my own life and the things society expects me to be afraid of. People look at my life and assume I must be terrified of losing my job, my caregivers, or even my future.The truth? I’m not afraid of those things. I’ve been living on a budget since I was 18. I’ve had my fair share of bad caregivers and I know how to direct my own care. I’m not afraid of a world that’s afraid of me. I’ve spent my whole life adapting, and I know that if I get a chance at a real paid job, I’ll be the employee of the month in thirty days.I am no longer afraid of my diagnosis as I was when I was a kid. I’m no longer afraid to ask for help from my best friend, Jesus Christ.So, if I’m not afraid of the “big” things society points to, what am I afraid of?If I’m being perfectly honest—and completely vulnerable—I’m deathly afraid of dying alone. As I approach 40 in a few years, I think about the partnerships and relationships we all long for.In our world, people often focus so much on surface values and physical appearance that they never look beyond to the person underneath. Relationships often stall because society doesn’t always see the person with a disability as a partner to build a life with. I’m not afraid of trying to have a relationship; I’m afraid I won’t get the chance.Why Vulnerability is Your SuperpowerThis is the part of the “limbo” that we rarely discuss in public. We talk about policy, we talk about resources, and we talk about legislation. But we rarely talk about the human desire for connection and the fear of being left behind.I share this because I believe that showing our vulnerability is where our true strength lies. When we hide who we are or what our needs are—like I used to hide my school tray in the back of the class so other kids wouldn’t see it—we are living in fear. When we step out and say, “This is who I am, this is what I need, and this is what I hope for,” we reclaim our power.Advocacy is about more than just fighting for the “big” things; it’s about fighting for the right to live a full, human life—complete with all its fears and vulnerabilities.I’ve shown you my heart. Now, I want to hear yours. What are you afraid of? What are the barriers—internal or external—that you’re working to overcome this week?Let’s stop hiding in the back of the room. Let’s bridge those gaps together and show the world that we are not a community defined by fear, but a community defined by the courage to live authentically.Keep on rolling. Keep on living.
There’s no way around it: living with a disability is difficult. But choosing to be an advocate and a leader for the disability community? That is even harder.
Welcome to our latest Community Blog installment. Here at The Advocacy Life, we believe in pulling back the curtain on what it truly means to represent a movement. Often, when people think of leadership, they think of “fame, fortune, and finish lines.” But in the world of disability advocacy, the reality looks a lot different.
If you are looking for a get-rich-quick scheme, advocacy is not it. More often than not, there is no money involved. At best, you might be reimbursed for your expenses; realistically, you’ll likely lose more financially than you’ll ever gain. It isn’t about fame, either. I’ve been blogging for four years, and I haven’t hit 500 followers. On YouTube, I’m under 200. These aren’t the kind of metrics that make you a “social media influencer.” And let’s be honest—it doesn’t exactly help your dating life. There is nothing less “impressive” to a potential partner than saying you stayed up all night drafting bylaws for a non-profit organization.
It isn’t even about job security or status. If I resigned tomorrow, the mission would continue. Someone else would step in to fill the seat. So, if there’s no money, no fame, and no status, it leads to one fundamental question:
For the Ones Who Can’t Speak The reason I choose to dedicate my life to this work is simple: I do it for the ones who can’t speak for themselves. I have a profound love for my brothers and sisters who are non-verbal. I love the way they communicate their needs and desires through action, presence, and spirit, even when they can’t find the words. I consider it a sacred responsibility to be the interpreter for those who just need a little extra time to be understood.
When leaders or policymakers call me for input, I don’t pick up the phone for credit. I pick it up because there is an unmet need in our community, and someone has to “man up” or “woman up” to address it.
It infuriates me when I hear people say, “I can’t be an advocate or “I’m just not the advocacy type.” When you live with a disability, this is your community. These are your people. Whether you like it or not, when you speak up, you aren’t just speaking for yourself—you are speaking on behalf of a community. Yes, your individual circumstances are unique, but your voice contributes to the collective volume of our movement.
When you choose silence, or when you say you “can’t do it,” you aren’t just letting yourself down—you’re letting down the community you are a part of. You are letting down a vital part of the American story.
To my fellow men and women with disabilities: we need you. The future of our rights and our resources depends on a collective effort. We cannot build a better future if only a few of us are willing to do the thankless work of drafting bylaws, attending meetings, and speaking truth to power.
If you feel like you don’t know how to start, reach out to us. That is why this Community Blog exists—to provide the tools, the encouragement, and the platform for others to find their voice. We need to get together now, not later. Because when we speak together, we create a future where everyone is heard.
Thank you for reading this week’s Community Blog. If this resonated with you, please share it with a fellow advocate who needs to hear that their hard work—even when unpaid and unnoticed—matters.Keep on rolling. Keep on living.
A sibling is more than just a family member; they are often your first advocate, your best advocate, and in some cases, your only advocate. The bond between a disabled individual and their sibling is a powerful and life-saving one, a truth I know all too well.
I was born a twin. My brother, who is also disabled, is the wisest, most empathetic person I know, and even though he might need the most physical support, he is the one we all go to for advice and guidance. In this episode, I share a perfect memory of us as kids, passing a bottle of soda back and forth in a car on a hot day in Puerto Rico . It was a simple, unspoken moment of, “I got you, you got me”.
But this episode is not just about him. It is also a love letter to my other sibling, my sister, who I was not blood-related to but who was “literally the best sister in the world”. She and my brother both held up my own light for me to see it and showed me that I was not weak or helpless. They both saved my life.
Our parents will love and protect us, but they will be reminded every day that they have a disabled child. A brother or sister, however, will see you simply as their sibling.
This episode is a tribute to that unbreakable bond, a raw and emotional look at the power of siblings.
In the 7th episode of Season 3, Kevin provides a list of tips on how to thrive in official meetings as a disability advocate. Develop soft skills so you can thrive in uncomfortable situations.
Find a good state has a disability legislative caucuses Disability Caucuses in State Legislatures – Disability Employment Policy https://share.google/zDSetCzqlGvwiUmjE
The Advocacy Life Podcast & Blog 