KNOWING

For three decades, I sat across the table from parents planning for the future of their child with intellectual and/or developmental disabilities. We worked to build plans that could sustain continuity of care, protection, and support across every age and stage of their child’s life. Over thousands of hours, I came to understand, and feel, the central tension they carried: their child would always need someone who knew them as a person, not just their diagnosis — while knowing that they themselves could not always be that someone.

And over the years, I also began to see a persistent gap between the parents’ reality and the advice given to them by the I/DD professional field. Parents have been told to make a care binder, keep lists, write a letter of intent. But that advice was a misdirection — none of those tools really provided what parents knew in their hearts was truly needed: a way for others to know their child as a person, and not just as a to-do list.

For a parent, two kinds of caregiving fuse into one daily reality. Direct care is the specific knowledge of what needs to be done — the appointments, the routines, the forms. Knowing is different: the tacit understanding of who this person is, built without ever meaning to — the gesture that means something only one person has ever caught, what calms, what triggers, what they need at 2am. A parent wakes up equipped with both, inseparably, every day.

The break—whether from a parent’s aging, disability, or death—is drastic. Direct care continues — the day does not wait, and someone else must step in for that. The knowing does not. What’s left is paperwork, binders, boxes of files: surface familiarity, without the connection underneath it.

That’s beginning to change.

Our goal is to spark dialogue about the reality parents live, and to open new doors for resolving the tension of planning for a child with lifelong care needs. Knowing is the key to that door.

— Michael Pearce

Articles

This is not a scheduled publication. Pieces are written when there is something to say.

I'm Not Allowed to Die First

September 3, 2026

Parents of loved ones with lifelong support needs often carry a private, unspoken belief: that they are not allowed to die first. This essay traces where that belief comes from, and why no field has ever named it.

Is There a Better Way to Write Down Everything About Your Child?

June 15, 2026

The Letter of Intent is the most universally recommended IDD planning tool and the least validated. 84% of parents never finish one. No study has shown it improves outcomes. The knowledge parents carry deserves a better format.

The Silo Problem Is Not the Problem

June 9, 2026

The IDD field organized its services into silos and spent decades trying to connect them. The connection was never the problem — no silo held the whole person. Only the parent did.

What Planning Is Actually For

June 9, 2026

The IDD field has been planning for the wrong event — preparing families for the parent's absence when what was needed was the reduction of the parent's irreplaceability while she was still present.

Succession Was the Wrong Frame

June 9, 2026

The IDD field borrowed "succession" from trusts and estates law and built its long-term planning around a word that named the wrong moment. What families actually live is a transition.

The Parent Is Not the Plan

June 9, 2026

The IDD field built its planning instruments around a single unspoken assumption — that the parent would always be there. This essay names what the field never did: the parent was the plan.

All articles by topic →

What the publication is about

Across thirty years of practice, the same patterns appeared in case after case. Four of them are named below. Each names something the field has built itself around without examining — and each is a place where what I watched did not match what the field said was happening. They are the publication's beat. They will be developed in pieces over time.

The Other Half of Caregiving

Caregiving for a person with IDD splits into two halves. One is Direct Care — the physical, chronic labor of appointments, medication, routines, funding fights. Exhausting, but the field has built real infrastructure for it: training, certification, staffing, service plans. The other half has none of that. It's the continuous, present-tense knowledge of who this specific person is right now — what a particular sound means, what's worked before and why, how they communicate without words. No instrument has ever been built to hold that half. This is what these pieces are about.

The Convenient Myths

Three myths the field and the broader culture keep alive, each one flattering the parent even as it costs her: the parent as selfless hero, the parent as permanent primary caregiver, the parent as forever caregiver. What this practice has watched, repeatedly, is the cost of those myths to the very people they flatter. The honest version: the parent is a parent, doing what's best for her loved one with the tools she was handed.

The Silo Problem

Silos — medical, educational, social service, regional center, school — are permanent structural features of the IDD service ecosystem, not defects waiting to be fixed. Interoperability efforts and care-coordination platforms haven't bridged them, and in absorbing the field's attention and funding, have functioned as an active blocker to the real fix. What actually holds a person's care together isn't a record any system keeps — it's the continuous, lived knowledge only the parent has ever carried from one silo to the next. These pieces argue for building around that fact, not against it.

Dual-Dream Advocacy

Parents are told, implicitly, to plan for their loved one's future or their own — rarely both, and rarely as though both deserve the same seriousness. What this practice has seen, again and again, is parents trying to hold two futures at once without a framework that treated either as optional. This is about what it looks like to advocate for both — not one at the expense of the other.

About the author

Photograph of Michael Pearce, author of the publication.

Michael Pearce sat across the table from families at the hardest decisions of their long-term planning, in case after case, for thirty years. The patterns that repeated, the places where the field's tools did not fit what the families were actually living, the words that were never said plainly enough — that is the source of the writing here.

He is a California-licensed attorney on Inactive Status with the State Bar of California (Bar No. 145481, admitted 1989). For three decades his practice was in estate planning, special needs trust planning, trust administration, probate, and — at the center of the work — conservatorships for adults with intellectual and developmental disabilities. That practice is the vantage point.

He is not a parent of a child with a disability. His standing is the practitioner's.

The practice ended. The work did not.

The publication is what those decades produced once the patterns that had been visible in case after case became something that could be set down in plain language for the people who needed it.

He is the founder of Tenerra, Inc., the company building ANYA — a system designed around the recognition that what parents know about their children does not live in records, and that the field has built itself as if it did. He is the originator of the Human Continuity Operating System (HCOS) — the architectural framing that locates the problem of long-term care for people with IDD in continuity of knowledge rather than continuity of authority — and the creator of the SHIFT Care Transition Plan methodology.

The site you are reading is the publication. It is not a law practice site. Michael does not provide legal advice and is not available to take on legal matters. Families looking for legal assistance can be referred to attorneys whose practices remain active.

Contact

Questions about my publications? A former client? Email me at [email protected].

To my former clients

If you've found your way here, you may be wondering what comes next for your trust or estate planning now that I've closed my practice.

Although I am no longer practicing, I'd be happy to introduce you to a trusted colleague for special needs trust planning, conservatorship, or other estate planning matters. I'd love to hear from you! [email protected].

Even though I've closed my practice, my work with families of children with disabilities continues. You can learn more at shiftfuturecare.com and anya.tenerra.ai.