Vesuvius and Me: A Caregiver's Heart Under Pressure I have been to the emergency room twice this week. Both times for the same thing: my blood pressure spiking into crisis territory, high enough to demand CT scans, an MRI, blood work, IV medication, hours of monitoring while machines beeped and doctors asked me, gently, if I was under a lot of stress. I almost laughed. I am nearly 71 years old. My daughter is nearly 42. I am the person responsible for the care of my most loved daughter who is now a grown woman, and experiences a developmental disability, a fierce and fun personality, and a nervous system that can go from calm to eruption with almost no warning. I have spent most of my life being ready for that eruption. My body, it turns out, has finally decided it can't be ready anymore. It is telling me, in the clearest language it has, that something has to give. The Job No One Sees People who don't live this life imagine caregiving as something you clock in and o...

I am hearing from families that people are losing IHSS Protective Supervision because their child is being described as "Self-Directed."  "A critical practical point: a person may have documents describing them as a “self-directed learner,” be enrolled in a Regional Center self-determination program, and still qualify as non-self directed under IHSS criteria. These are not contradictions. They are separate programs measuring different things with the same words." (IHSS Connect link below) I am writing this as another mom who understands this process from the inside. I am not writing from a distance. I have to renew the request for Protective Supervision for my own daughter every year, and I know how frustrating and exhausting it can feel to prove something that is obvious in daily life. When you live with someone every day, the need may feel completely clear. You may think, “How could anyone not see this?” or “ Why do I have to prove what I already know? ” Those fe...

Every parent I have ever worked with already knows the truth about their person. They know it in their bones. What they needed was a language for it, a structure for it, and someone to tell them it was worth fighting for. This book is that. A Note Before You Begin This book was not written from a distance. It was written from thirty-five years of sitting in rooms with families who were doing the hardest thing — learning to fight for a life that fits for someone they love. It was written from the meetings, the waiting rooms, the plans that said nothing true about the person they were supposed to serve. And it was written because of Lauren. My daughter. My compass. The reason I ever learned that a plan could be a portrait instead of a file. What you hold here is not a policy manual or a compliance guide. It is a map — imperfect, honest, built from everything I have learned — for parents who are tired of proving what they already know, and ready to build something better. You do not need...

  The Diagnosis That Changes Everything: Why Genetic Testing May Open a Faster Path to Social Security Benefits For decades, I've sat across from parents who are exhausted. Not just from the caregiving — though that is its own marathon — but from the paperwork, the waiting, the proving. Proving that their child truly cannot work. Proving that the disability is real, is severe, is permanent. Proving what they have known in their bones since their child was an infant. If you are the parent of an adult child with developmental disabilities, and you haven't yet pursued genetic testing, I want to tell you something I wish someone had told me years ago: a genetic diagnosis may be one of the most practical and powerful tools in your child's benefit toolkit. Here's why. The SSA Compassionate Allowances Program: A Fast Lane Most People Don't Know Exists When a family applies for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), they en...

  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...

In my work parents call and ask me for a recommendation about the best daytime program out there.  It is with great angst these families find themselves plunged into the endeavor of finding daytime services as their child leaves their well planned, structured and much more predictable IEP-driven services. When I faced this with my baby-faced 22-year old I recall the arduous task facing me. I walked into what felt like the abyss of day programs, none of which seemed like anything that the structure of the school district programs offered. I was depressed, fatigued and felt that I would never find the right place.  A few of the other parents and I began discussing how we could start our own program, buy a business, anything to keep them from what felt like the depths of the black hole of day programs.  Finally, several of us selected the same program and it went rather well. A lot of my angst came from seeing the various aged participants and thinking... "...

I am in the process of becoming a Certified Person Centered Thinking Trainer because I am so passionate about this process. I have witnessed my daughter's life transform into a rich and full life. We use one of the tools to achieve this. It is using "Important To" to get what is "Important For" her. It is a win-win and we are all happier as a result. A video explanation featuring Michael Smull is available at  https://www.youtube.com/watch?v=VDqERIxM4HM . For now I'll share this video I created about our most recent endeavor which was a great success! Feel free to contact me at journeyofchoice@gmail.com And check out my newest project at www.thebffproject.org ! Interested in learning about Person Centered Thinking? Visit  http://www.php.com/services/PCT

I speak with hundreds of families each year about planning for their child's future when they are no longer able to provide the supports and supervision for their child, most of whom, like my daughter, will need a lifetime of supports.  The fact is, is that death is inevitable. While we hate to talk about it generally, a day doesn't pass where I don't wonder... "Have I left the trail that needs to be there for Lauren?" "If I died today, is there enough money?" "How would Lauren survive without me?" "Who will make sure people actually listen to her?" ... I know that I share this concern with hundreds of thousands of other parents who have dedicated their lives to raising a child with a disability, be it a developmental, mental health, or other factors that limit their ability to provide and fend for themselves. See if this sounds familiar, it goes something like this... "I'm too young to think about it; to if I think ...

There are moments in life where we are able to gain insight through personal experiences.  As the parent of an individual in need of lifetime supports, I have had many opportunities to expand my view of the world.  This time, I have been blessed with the opportunity to feel, ever so briefly, from the side of those without eloquent language skills. The inability to effectively communicate is my current learning experience. On May 5th, I had jaw surgery resulting in my jaw being wired shut.   In the recovery room, I was handed a paper and pen to communicate, being loaded with anesthesia so no one could read my writing and I could see my failing penmanship as it trailed off the paper. In the hospital room, I wasn't even given any way to communicate except my own mumbles.  Agonizing jaw pain and no way to communicate.  Prior to the surgery, I had trialed a few apps before the surgery and found one that was simple and effective. Through a voice which...

In a matter of a few short weeks, my girl will be 30 years old. Given that she needed behavioral supports from the age of 2, I should have known that the road was going to be unpaved, bumpy and filled with unexpected turns.   29th Birthday Party I have learned to appreciate every success, every word that comes out of her mouth and her ability to be immersed in our community, a dream, years ago, I thought only for others. Let's get to this age appropriate concept ... is it age appropriate for us as parents in our 50's and 60's, to still have 24/7 responsibility for an adult child? I think not. Look around at your friends who are off traveling, planning their next adventure without a single thought about their children's care, should lend you some perspective.   So, I say this, as long as it is safe, do what needs to be done to make your life easier, more relaxed, happier, allows your child to be comfortable in your community and if someone has a problem ...

News Flash! During a 20-30 minute stand-off at the San Jose Safeway Check Out Stand--Mother Makes a Breakthrough!    Situation : Mother Taken Hostage by a Giant Red Lobster !  I began to wonder... how did this happen? We entered the doors, happy and peaceful. After all, she got to go to work with me since one of her staff was ill and she loves being at PHP, so all was well. We got the cooked chicken, some salad fixings and were ready to go make our lunch when she spotted it!  This  Giant Red Lobster , soft on the outside, stuffed with cushy material on the inside, who vaguely resembled Ariel's friend from the Little Mermaid but you can see that in the video. Those of you that know me are probably aware that I believe that Lauren has the right to make decisions and to be supported in a way that works for her.  I have studied, practiced, listened and read but continue to be challenged at times over how to manage a challenging situation when it comes to...