Not Your Average Death Blog
Everyone Belongs
There’s no shortage of confusing and harmful narratives about disability in the world. Too often, families are left to sort through myths and misinformation on their own. That’s why it matters so much to keep centering truth, dignity, and respect.
Last week, I had the joy of babysitting my sweet niece while her mom (my sister-in-law) visited her son’s kindergarten class to read a story and lead an art activity about inclusion. Watching her show up for those kids reminded me that legacy takes many forms. Sometimes it looks like policy change, sometimes like advocacy, and sometimes like reading aloud in a circle of five-year-olds.
How to Prevent your Estate Plan from Becoming a Family Battlefield
In Michigan, a recent guardianship case caught my attention—not just because it happened where I live, but because it’s the kind of story I see over and over again, in different forms, across the country.
Happy World Down Syndrome Day!
Today, on World Down Syndrome Day, we reflect on this year’s theme: “Improve Our Support Systems.” It’s a theme that resonates deeply with the work we do at The Death Readiness Podcast—especially in our latest episode, “Who’s on Your Team? The Key Players in Special Needs Estate Planning,” released today.
Understanding the Potential Impact of Medicaid Cuts
Medicaid, established in 1965, provides essential healthcare coverage to more than 70 million Americans, including children, pregnant individuals, seniors, people with disabilities, and low-income individuals and families. It operates through a federal-state partnership, ensuring vulnerable populations can receive necessary medical services.
Recently, discussions in Congress have focused on significant budget reductions, with proposals suggesting cuts from federal programs of up to $880 billion over the next decade. While these cuts could be distributed across various programs, there is concern, as evidenced by a recent New York Times article by Margot Sanger-Katz, about the potential effect of cuts on Medicaid.
Breaking Down the Alphabet Soup of Special Needs Estate Planning: SSI, SSDI, Medicaid & Medicare
If you’ve ever tried to plan for a loved one with special needs, you know how confusing it can be. Between navigating government benefits, avoiding costly mistakes, and figuring out how to balance personal savings with public programs, it’s easy to feel lost.
That’s exactly why I invited Kristen Lewis, a nationally recognized expert in special needs estate planning, to join me for a special two-part series on The Death Readiness Podcast. Kristen’s deep knowledge and compassionate approach make her the perfect guide to help us untangle this complicated (but critical) topic.
The Power of Self-Perception
In a recent episode of The Death Readiness Podcast, I sat down with my father, Carmen Mastroianni, to talk about Dan’s early years. We discussed my parents’ battles to get others to see Dan’s full humanity, and the unique long-term planning that accompanies raising a child with a disability. I also sat down with Dan to get his perspective, in his own words.
Navigating Parenthood and Planning: A Father’s Story of Love, Advocacy, and Inclusion
Becoming a parent is always a life-changing experience, but when a child is born with special needs, the journey can bring unexpected challenges, emotions, and a steep learning curve.
In Episode 7 of The Death Readiness Podcast, I sit down with my dad to talk about the reality of raising a child with special needs, the fight for inclusion in schools and sports, and how my parents made long-term planning decisions. It’s a conversation about love, resilience, and the responsibility of planning for the future.