The Broken Promise of Home For twenty-six years, Trudy, a single mother for nearly 30 years, carefully planned for her daughter Lauren's future. Lauren, now 41, has autism and an intellectual disability that requires 24/7 supports, and receives $1,300 per month in SSDI benefits based on Disabled Adult Child Benefits. Trudy's three-bedroom condo in Saratoga, purchased for $430,000 in January, 1998, is now worth $2 million. Under Proposition 13, her property taxes have remained manageable at roughly $9,000 per year. The plan was simple: leave Lauren the family home, the place where she grew up, where she feels safe, and where local services support her community-based living. At 70 years old, if Trudy lives another 10-15 years, she will have spent nearly four decades ensuring Lauren has a stable foundation for life, while the impact of the impossible tax burden continues to rise.  But California's Proposition 19, passed in 2020 and effective February 16, 2021, has shatter...

  What happens when turning 70 doesn't feel like reaching a milestone, but like running out of time? Yesterday there was a gas leak at my daughter's program, on my 70th birthday. Construction had pierced a pipe, the shut-off valve was stuck open, and everyone had to evacuate immediately. My 41-year-old daughter was playing vegetable bingo—something she needed to complete because that's how her mind works. When staff tried to get her to leave, she resisted. She had to be physically carried out, traumatized and unaware of the danger she was in. Later, I was able to help her understand that the people who evacuated her may have "saved her life," and she thanked them. But I lack faith that in a repeat evacuation, the same thing wouldn't happen. If there's ever a need to take cover, seek shelter, flee danger—this will be a challenge for whoever is supporting her. This is my constant, daily worry crystallized into one terrifying afternoon. I've been thin...

  Now, it’s the “Oh $hit, I’m almost 70” phase. —70. A milestone that once felt impossibly far off is now here, present, lived-in. I still feel young in many ways, but the truth is undeniable: I am in the phase of life where you can’t pretend there’s still plenty of time to get everything in order. The runway is shorter now. I’ve been reflecting a lot lately. Ten more years of love, worry, planning, fatigue, advocacy, joy, and fear. Ten years watching Lauren grow, shift, surprise me, and need me—still. Ten years of doing my best to hand off pieces of the puzzle, bit by bit, without letting the whole thing fall apart. And ten more years of quietly, painfully asking myself: • Is it enough? • Will it hold when I’m gone? • Who will catch her if she falls—and will they see her, the whole her? I’ve lived with these questions longer than I care to admit. I speak to families every week who are just beginning this journey, or who are stuck in that loop: “I know I should plan, but it’s...

The Missing Link: California's Failure to Include Families in Person-Centered Care Education California has made significant investments in person-centered care, allocating substantial funding to train providers and agencies in this transformative approach that prioritizes individual preferences, choices, and quality of life. Yet there's a glaring oversight in this well-intentioned effort: the families who provide daily care and maintain 24/7 responsibility for their loved ones are being left out of the education process. The Provider-Focused Approach State funding flows generously toward professional development programs, training workshops, and certification courses for service providers. Agencies receive resources to restructure their programs around person-centered principles. Care coordinators attend seminars on implementing individualized planning processes. This professional education infrastructure is robust and comprehensive. But person-centered care isn't just...