The Advocacy Life Podcast & Blog

Category: Disability Awareness

  • We Cannot Go Back

    We Cannot Go Back

    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.

    sources:

    https://abc7ny.com/post/geraldo-rivera-reflects-willowbrook-investigation-54-years-later/18943658/

    RFK Jr. Takes Issue With Medicaid Paying Family Caregivers

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  • Disability Tax

    Disability Tax

    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.

    Sources for this blog

    How much does it cost to live with disability in NJ_Download

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  • Common Sense

    Common Sense

    Podcast Episode

    “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.

    Podcast transcript

    TAL S4 E8 Common senseDownload

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  • Grdianship: A Slippery Slope

    Grdianship: A Slippery Slope

    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.

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  • Remembering Section 504

    Remembering Section 504

    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

  • Rising up

    Rising up

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  • Returning to the Happy Place

    Returning to the Happy Place

    A community Blog

    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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  • Naked for Valentine’s Day

    Naked for Valentine’s Day

    Community Blog

    Note: The following is an excerpt and refresh of a chapter from my book, “Confessions From Disability Limbo.” It is a raw, crude, and honest look at disability life. With Valentine’s Day just a few days away, everyone is talking about romance and intimacy. But today, I want to talk about a different kind of “getting naked”—the kind that has nothing to do with sex and everything to do with being human.I have a problem. I know some will find this controversial. I’m half-expecting an email from a legislative office removing me from my committees, and I’m fairly certain my mother and grandmother are already lining up to scold me. But I beg your indulgence. This is advocacy in its purest, most unfiltered form.I have to ask: Are you comfortable being naked

    A few years ago, I was on respite with my twin brother. The staff had undressed me and placed me on the bed when my brother suddenly had an urgent need for the restroom. The staff rushed to help him, leaving me like Adam in Paradise before he discovered the fig leaf.Did I panic? No. I rolled over, grabbed my phone, and started blasting music. A few minutes later, the staff walked back in to find me in my own little world, air-drumming with everything I had to the epic solo in Phil Collins’ “In the Air Tonight.”

    It was a ridiculous moment, but it highlighted a strange reality of my life: While I am often uncomfortable with my body, I have become incredibly comfortable being naked around strangers.I am a 38-year-old male, roughly 130pounds, exactly five feet tall, with hair everywhere but my head and a collection of scars from past surgeries that tell the story of my survival. I won’t be on the cover of GQ anytime soon.

    For me, being naked isn’t about romance; it’s about maintenance. Most people only show their bodies to those they love and trust. For those of us with disabilities, our bodies are often “public property.” We are poked, prodded, lifted, and cleaned by people we barely know. We have to trust a stranger to handle our most private needs with dignity.I am one of the lucky ones. For many in our history, being naked wasn’t a moment of Phil Collins air-drumming; it was a tool of torture. In the old institutions, cold showers were used for behavioral control. Vulnerability was met with violation.

    Even today, I think about the non-verbal members of our community. How do you communicate that the water is too hot? How do you maintain your soul when your body is being handled like a piece of equipment? This happens every single day.A Valentine’s Challenge: Get RealAs Valentine’s Day approaches, we are bombarded with images of “perfect” bodies. We are told that intimacy is about performance. I want to challenge that.True intimacy is the ability to be seen—fully seen—without a mask. I have a challenge for every person reading this, whether you are able-bodied or disabled:Talk to someone you love while you are nude. I don’t mean sex. I don’t mean it as a joke. I mean sit in that vulnerability and have a real, personal conversation about your life, your fears, or your dreams.

    The Rules:No “Post-Sex” Cheating: Don’t do it when the oxytocin is flowing and everything feels perfect.No Attention Seeking: This isn’t a “look at me” moment.No Distractions: Don’t ask, “Does this mole look weird?” Keep it real.The most important conversations of my life have happened in these moments of total exposure. When you take away the clothes, the suits, and the “Advocate Kevin” persona, all that is left is the man.I share these experiences because society often forgets that people with disabilities are people first. We deserve dignity in our vulnerability and respect in our nakedness.Thank you to anyone brave enough to try this. Happy Valentine’s Day.Keep on rolling. Keep on living.

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  • The Legacy of the New Jersey Disability Ombudsman

    The Legacy of the New Jersey Disability Ombudsman

    Community Blog

    In the world of advocacy, we often talk about “the system.” We talk about it as if it’s a giant, immovable machine—something that operates at a distance from the people it’s meant to serve. But for the last several years in New Jersey, we had a leader who refused to look at the system from a distance. Instead, he got in his car and drove 148,000 miles to see the reality for himself. As Paul Aronsohn prepares to step down as the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, I want to take a moment to reflect on his legacy. I’ve had the distinct pleasure of working alongside Paul through my roles with the New Jersey Council on Developmental Disabilities (NJCDD) and Self-Advocates Becoming Empowered (SABE)

    In Paul, we didn’t just have an official; we had a witness. The Courage to Speak Truth to Power When Paul was first appointed by Governor Phil Murphy in 2018, he didn’t settle into a comfortable office in Trenton. As noted in the recent Star-Ledger profile, he submitted a report early on that described New Jersey as a “tale of two systems”—one that was functioning well and one that was failing.That kind of honesty is rare in government. It ruffled feathers. It made people in power uncomfortable.

    Paul noted, he wasn’t there to make people comfortable; he was there because “lives, frankly, depend upon it.”That is the heart of advocacy. It is the willingness to say the thing that needs to be said, even when the administration that appointed you isn’t happy to hear it. Paul understood that his loyalty wasn’t to a political office, but to the families who were struggling to find housing, the individuals waiting for services, and the people trapped in the “benefits trap” that I often talk about.In my work with NJCDD and SABE, I saw firsthand how Paul valued the voices of self-advocates. He didn’t just speak for us; he created space for us to speak for ourselves.

    He understood that the “Exposure Method”—the idea that people need to see the raw, unfiltered reality of disability to create change—was the only way forward. Whether he was visiting families in their living rooms or standing with us in Trenton, he was always listening. He took the “heartbreaking” stories he found on the road and turned them into actionable recommendations.He helped us navigate the “limbo” between existence and a full life.He

    He knew that for many in our community, the difference between the two is often a single phone call, a specific waiver, or a caregiver who actually shows up. Paul leaves behind an office that is more vital than ever. He fought for it to be independent, and he fought for it to be loud. He showed us that the government works best when it is empathetic, transparent, and—most importantly—willing to admit where it is failing.While Paul is moving on to his next chapter, the 148,000 miles he traveled have left a permanent map for the rest of us to follow. He showed us that you cannot fix a system you aren’t willing to see up close. Paul, on behalf of the entire disability community in New Jersey, thank you. Thank you for the miles, thank you for the honesty, and thank you for being a “fearless” leader who wasn’t afraid to show his own heart. You’ve taught us that while the system may be a machine, the people fighting for change must always be human.

    Paul’s departure shouldn’t mean a quiet period for the Ombudsman’s office. We must continue to support this office and ensure it remains a candid, independent voice for our community. Keep on rolling. Keep on living.

    sources

    This N.J. official drove 148,000 miles …t he found was heartbreaking. – njDownload

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  • Unemployment First

    Unemployment First

    Community Blog

    In 2006, I was given my first job offer. To be a greeter at Walmart. I filled out the application online with tons of enthusiasm. I was in the final weeks of my senior year. This would have been a respectable first employment. I was hit with a horrid dilemma. Around their 18th birthday, there is a bizarre rite of passage that takes place for my community, and that is their initial enrollment for Social Security benefits: Supplemental Security Insurance (SSI)

    I rushed home to tell my dad, he was furious.

    “If you’re going to risk your life, don’t be a clown in people’s circus. You can’t grow there. Sooner or later, you will lose the benefits you need, and then what are you going to do? You’re going to go there with the best of intentions, saying hi to everyone, and people are just going to walk right by you. You could work there for 20 years, and you’ll be exactly where you are now. You don’t have a safety net in this life. Everything you do must be calculated. Do something where you can make a difference and make sure it’s worth it. “

    The summer before I went to college, I did an internship for my local mayor’s office. That was the right fit. Her office was right by the high school. The school bus would drop me off. I spent afternoons there twice a week. I put together all the packets for the new residents. Complete with a signed letter from the mayor. I was a good office clerk. After 2 weeks, I was featured in the town newsletter. My dad kept that for the longest time.As a parting gift, they gave me a small blue piggy bank for me to save my money.

    “I’ve always believed that, given the tools and equipment they need and on a level playing field, American workers can out compete and beat the pants off anybody, anywhere.”-Rnold Reagan.

    In the midst of the pandemic, I worked with Assemblywoman Carroll Murphy to improve New Jersey’s Workability program. It required an update. It is not perfect by any means, but it’s a needed step in the right direction. While everyone was watching Netflix and gaining weight during the shutdown. I worked with the NJCDD to launch the disability legislative caucus across the Garden State. It is completely nonpartisan with leadership from both sides of the aisle. The goal is to foster conversations with legislators before bills are passed into law.

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