This episode revisits the most-listened-to episode of The Death Readiness Podcast in 2025. Jill sits down with her dad, Carmen Mastroianni, to talk honestly about raising a child with Down syndrome over a lifetime—from the shock of diagnosis in 1977 to decades of advocacy, inclusion, planning for independence, and learning to live with worry that never fully disappears. This is not a story about flawless estate planning or financial success. It’s a story about showing up, adapting when systems fall short, and building a legacy quietly through everyday decisions that most people never see.
What You’ll Learn in This Episode
·What raising a child with special needs looked like in the 1970s, when there was no internet, limited resources, and little institutional support
·Why early intervention matters, and how one supportive professional can change the trajectory of an entire family
·How advocacy shows up in everyday moments, from fighting for inclusion in neighborhood schools to pushing back when institutions say “there’s no place for your child.”
·Why mainstreaming and community inclusion matter, not just academically, but socially, and how being known in a community can protect and empower a child.
·What independence can look like for an adult with special needs, including living in a group home, working, maintaining friendships, and making decisions about one’s own life.
·How group homes actually work, including funding, staffing, waitlists, and the realities families face as caregivers age.
·Why planning for the future is essential, especially when parents won’t always be around, and how special needs trusts fit into that picture.
·How individuals with special needs experience grief, relationships, and emotional loss, often more deeply than people assume.
·Why legacy isn’t just about money, but about advocacy, adaptability, and the quiet, persistent work of love over decades.
Resources & Links
Center for Disability Services: Residential Services
Center for Disability Services
314 South Manning Blvd.
Albany, NY 12208
518-437-5700
The Center for Disability Services is a nonprofit organization in New York that provides comprehensive support and services for individuals with disabilities. The Center played a crucial role in securing supportive housing and care for Dan. Through its commitment to inclusion and individualized care, the Center continues to provide essential resources that empower individuals with disabilities to lead fulfilling lives.
Gerald B. Healy, MD, FACS was an ear, nose, and throat specialist at Children’s Hospital in Boston who played a critical role in saving Dan’s life. Dan suffered from severe respiratory issues as a toddler—issues that local doctors were unable to diagnose. Dr. Healy identified that Dan’s airway was dangerously small due to enlarged tonsils and adenoids and recommended immediate surgery.
Kids Like These is a 1987 TV movie that tells the story of a couple who has a baby with Down syndrome. The script was co-written by Emily Perl Kingsley, a well-known advocate for individuals with disabilities, along with Allan Sloane. Kingsley, whose own son, Jason Kingsley, has Down syndrome, infused the film with real-life experiences to highlight the struggles and triumphs of parenting a child with special needs.
One notable detail from the movie was inspired by Dan’s mother, who once shared a story with Emily Perl Kingsley about Dan being denied a library card because he couldn’t sign his name. This real-life event was later referenced in the film, illustrating the systemic barriers faced by individuals with disabilities and the importance of advocacy.
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