“These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.” Robert F. Kennedy Jr.
I want to state from the outset: I don’t hate RFK Jr. I respect and love him as a fellow human walking this earth, despite disagreeing on several key issues. Quotes like these are particularly damaging. They embody the ableism and fear that permeate modern American culture.
The problem with this perspective is that it ignores the fundamental truth that every person with a disability has their own unique journey, their own growth process, their own setbacks, and their own successes.
So often, people with disabilities are lumped into boxes by a system that refuses to let them out. We are treated as if our lives are a “nice, comfortable jail cell.” We don’t realize that the door is a cell door until it gets slammed in our faces—and by then, it’s too late to get out.
RFK Jr.’s comments about dating are a prime example of the dehumanization we face. Just because someone may be non-verbal or have different physical needs does not mean they are unable to consent to or enjoy a loving, caring relationship. There are plenty of non-verbal individuals who have had rich, complex romantic lives—some of them having had more sexual encounters than I will ever have!
Society often measures our value by our productivity—by whether we pay taxes or hold a traditional job. With the new “Home and Community Based services HCBS” cuts coming to the nation in October 2026, many of us will be forced to choose between our health insurance and our ability to work.
We are forced to disclose our limitations and decide: Do we stay in poverty to keep our benefits, or do we risk it to earn a little bit of money? It is these societal norms that are damaging us, not our wants or our wills. We want to work—we want to work harder than most other Americans. We just need the real opportunities to do so.
Quotes like these don’t help anyone; they just hurt. If you want to help someone with a disability, don’t look for what you think they “can’t” do. Make them stronger, and they will make you better.
Don’t be afraid of us. Thrive with us. Push us. Educate us—because we can educate you in the same way. Together, we can learn from each other. That is what a good society does. That is what a good America does.
While the integrity of our elections is a goal we can all respect, it should never come at the cost of disenfranchising a significant portion of our population. The Safeguard American Voter Eligibility (SAVE) Act (H.R. 8281) creates functional barriers that strike at the heart of our democratic principles: the idea that every voice—and every vote—matters.
For many in the disability community, the SAVE Act introduces “limbo” in the form of administrative The Act requires documentary proof of citizenship (like a passport or birth certificate) to register to vote. Millions of Americans lack these documents readily at hand, and for those with mobility or transportation challenges, the process of obtaining them can be nearly impossible.including
the AAPD, have noted that these requirements disproportionately impact people with disabilities, students, and low-income individuals who may not have the means to navigate complex bureaucratic systems.
By adding these layers, the Act undermines the National Voter Registration Act (NVRA), which was designed to make it easier—not harder—for all citizens to participate in their government.Excluding a population from the polls is against the very spirit of our nation. True election integrity comes from ensuring that every eligible citizen, regardless of their physical or cognitive ability, has a clear path to the ballot box.
Missing two weeks of blogging and podcasting is never ideal, but I am officially back, and new content is on the way.
An article from Disability Scoop regarding a flag flown at the US Capitol to honor a 22-year-old who tragically died at a day program hits incredibly close to home. I spent over 10 years attending a series of disability day programs. Because I have the physical ability to speak clearly, I would often find myself stepping up to be the voice for my peers who were non-verbal. When tragedies like this happen, lawmakers rush to find legislative fixes, but we need to talk about what actually works.I
I strongly agree that more oversight is needed to protect vulnerable individuals, and we absolutely need higher standards in training our staff. However, some of the specific legislation being proposed—like mandating surveillance cameras everywhere—is deeply flawed. Cameras and surveillance systems cannot prevent tragedies.
Not all individuals are the same, and blanketing communal spaces with constant surveillance will deny us our dignity and privacy without due process. This article hits home on a painfully personal level. During my time in the system, I attended far too many funerals for my fellow brothers and sisters from day programs and group home settings. Tragically, sometimes there is no one there at those services besides the other residents.During
During the pandemic in 2020, so many of these individuals passed away in isolation. To the general public, they weren’t seen as people with lives, stories, and friends—they were just numbers going up on a screen.We
We must do better to honor their lives, protect their privacy, and raise the standards of the care they receive.
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.
“Disability and death are the only two strategies in life.”
In this episode of The Advocacy Life, Kevin Nuñez tackles a topic that the major news outlets are missing: The Social Security Restoration Act. Most people don’t realize that the rules governing SSI and SSDI haven’t been significantly updated since the 1970s.
Kevin breaks down the “Common Sense” reasons why this legislation is a necessity for all Americans, regardless of political alliance. He shares personal insights into the “marriage penalty” and the “poverty trap” that prevents disabled individuals from saving money or building a life with a partner.
Key Takeaways:
The Resource Gap: Why the $2,000 asset limit is outdated and counterproductive.
Equality in Marriage: Understanding why the current system punishes people with disabilities for getting married.
Beyond ABLE Accounts: Why the Serious Injury Restoration Act offers a more logical path forward than current savings tools.
How to Take Action: Your voice matters—learn how to tell your legislators to support this package of bills.
In the world of disability advocacy, we often talk about “gaps”—the moments where the system fails to catch us. Recently, New Jersey took a step to close one of those gaps. As of April 1, 2026, a new law allows families to begin the guardianship petition process six months before a child turns 18. On the surface, this is a “commonsense and compassionate” reform. It aims to eliminate the terrifying period where a young adult with medically complex needs might be left legally unprotected because of court delays.For
For many families, this isn’t just paperwork; it’s peace of mind. We need to have a real conversation about what guardianship actually is. As someone who has lived in the “disability limbo” of society, I know that equality is about status, rights, and opportunities. While I understand that some individuals require the support of a guardian for their safety, we must admit that guardianship is a slippery slope. When we talk about guardianship,
We are talking about the legal removal of an individual’s right to make their own choices—where to live, how to spend their money, and even who to see. It is, in many ways, a “fancy name” for a loss of independence. If we aren’t careful, we risk turning a protective measure into a permanent ceiling on a person’s potential. Every person with a disability has a “different normal,” but we all have the same fundamental human needs. My needs are different from a peer on the autism spectrum or someone with Down syndrome—not better or worse, just different.
This is why guardianship cannot be a one-size-fits-all solution. We must prioritize supported decision-making models that allow individuals to retain their rights while receiving the help they need. Just because someone needs help balancing a checkbook doesn’t mean they shouldn’t decide who they date or where they work.The ultimate objective should always be to help the individual “flourish and be triumphant” within their community, not to isolate them behind a legal barrier. I’m just trying to leave the world a little better than I found it. This new law in New Jersey is a win for efficiency and protection, but it’s also a reminder to all of us in the community to stay vigilant. We must ensure that “easier” access to guardianship doesn’t lead to “faster” erosion of our rights. Keep on rolling, keep on living.
First things first: I’m back. After taking time for reflection and renewal during the Lent season, I am energized and ready to dive back into the fight. As I shared in Confessions from Disability Limbo, life is a series of “limbo” moments, but we don’t have to stay stuck. We move forward.
Today, we need to talk about the bedrock of our rights. While many know the Americans with Disabilities Act (ADA), we cannot forget its predecessor: Section 504 of the Rehabilitation Act of 1973.
Section 504 was the first federal civil rights protection for us. It essentially says that if an entity gets federal money, it cannot shut us out. It’s why we have access to schools, hospitals, and community programs today.
There is exciting news close to home. Lawmakers in Delaware are taking a massive stand by introducing legislation (like Senate Bill 198) to codify Section 504 protections directly into state law. Why does this matter? Because federal protections can sometimes feel like they’re on shifting sand. By putting these rights into state code, Delaware is ensuring that no matter what happens in Washington, disabled Delawareans have broad, enforceable protections for equal access. Perhaps our wonderful Garden State would consider such an initiative.
We have to stay vigilant. There are currently several states renewing attacks on Section 504’s “integration mandate”—the very rule that keeps us out of institutions and in our communities.
Section 504 isn’t just a “legal thing”—it’s about our dignity and our right to be “equal and contributing members of society”. Let’s keep building that stronger future together.
Stay tuned for the next podcast episode! Keep on rolling. Keep on living
It might not surprise those of you who follow my work regularly that I don’t get out into the physical world as much as I’d like. Since the pandemic in 2020, the rising cost of living and the complexities of coordinating care have made “getting out” a major operation.While 95% of my advocacy work happens virtually—which has certainly made things more accessible—I have to be honest: I miss the personal touch. There is no digital substitute for a firm handshake with a colleague, a hug from a friend, or seeing a meaningful smile in person rather than through a Zoom tile.
That is why I am so energized to share that at the end of March, I am heading back to my “Happy Place”: Washington, D.C.To some, D.C. is just a place where politicians work. But as a child, I never wanted to be a baseball player or an astronaut. I wanted to be in Washington. I wanted to be where the laws are made, because I knew that was where someone like me could make the most difference.
Rolling—my way through Capitol Hill is my dream job. Representing the state of New Jersey and the individuals with disabilities in our community is a privilege I do not take lightly. It humbles me every single time.Before I can get on the road, the real work happens here at home. I am currently spending my afternoons contacting legislative offices to schedule visits on behalf of the New Jersey Council on Developmental Disabilities (NJCDD).These meetings are where the “Exposure Method” meets the “Legislative Process.We
We aren’t just going there to share stories; we are going there to ensure that when policy is written, our lives are not treated as an afterthought or a “survival math” equation.Some might say these seminars are just formalities and that nothing really gets done. I disagree. In advocacy, small things add up to big things. Every phone call to a staffer, every scheduled visit, and every face-to-face conversation on the Hill is a brick in the bridge between existence and a full life.
At 39, I’ve learned that the natural rhythm of life can sometimes feel like things are being taken away. But my message to you today is this: Don’t ever stop trying. Don’t ever stop reaching. Don’t ever stop getting excited.What might feel like “nothing” to someone else is “everything” to us. I can’t wait to head to the nation’s capital to represent you, and I look forward to telling you all about the adventures when I return. Keep on rolling. Keep on living.
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