The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • Barriers to the Ballot

    Barriers to the Ballot

    A Community Blog

    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.

    More information here

    AAPD Response to the SAVE Act Center for Public Representation: The SAVE Act Will Harm People with Disabilities

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  • Pitfalls

    Pitfalls

    Podcast Episode

    As summer approaches, host Kevin Nunez marks a major milestone—his 20th high school reunion. Looking back at his time as a young man with a visible disability navigating a mainstream public school of 2,700 students, Kevin reflects on the literal and metaphorical pitfalls he fell into.From accidentally steering his wheelchair into a bush to avoid crowded school hallways, to facing down an intimidating intake officer at the Social Security office at age 18, Kevin shares the raw, unvarnished realities of growing up disabled. He breaks down why we need to move past “inspiration porn” on social media and focus on genuine peer mentoring, building thick skin, and embracing failures as catalysts for major success (like getting a standing ovation at his high school talent show!).This episode is a must-listen for disabled youth (ages 18–25), parents, transition coordinators, and anyone ready to look past the stereotypes and bridge the gaps together.”Disability and death are the only two strategies in life. There is a misconception in our world that disability will not affect anyone, when the fact is, it affects all of us.” — Kevin Nunez

    Episode Transcript

    TAL S4 E11 PitfallsDownload

    The Advocacy Podcast

    Living Beyond Disability Books

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  • Dignity V. Grief

    Dignity V. Grief

    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.

    sources:

    https://share.google/EQgO4hdQdOFVkCjoT

  • A Message for RFK

    A Message for RFK

    Podcast Episode

    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.

    Show Notes

    RFK Jr. Takes Issue With Medicaid Paying Family Caregivers

    Transcript

    TAL S4 E10 A Message for RFKDownload
  • Running for office?

    Running for office?

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  • 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

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

    Where the Ramp Ends

    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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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

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

    Where the Ramp Ends

    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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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

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

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    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

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  • Finding Focus

    Finding Focus

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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.

    The Advocacy Podcast

    Living Beyond Disability Books

    Both books are available exclusively on Amazon.

    Subscribe to Letters From Limb. Newsletter

    This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..

    Where the Ramp Ends

    This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..

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