Hello all, happy new school year—fingers crossed. Brian here. Welcome to this edition of Lighthouse, created by overwhelmed parents, for overwhelmed parents! We’re in early days, so If there’s any topic you’d like to see covered, or if you want to “sound off” in some way or pitch an idea, please email us at [email protected].
⚠️ School Starts — What Autistic Burnout Looks Like in Week Two
The start of the school year is the best time to connect with your child's teachers and related service providers — especially the ones meeting your child for the first time. Sharon Kaye-O’Connor, an autistic therapist who counsels autistic adults, their families, and educators, writes that this is the window that can make or break the year.
Why it matters: A team that understands your child's patterns from day one can catch a rough second week before it becomes a full-blown crisis.
What to share:
Patterns from past years — like a strong first week followed by a second-week crash.
Strengths and challenges — what tends to help, and what tends to trip things up.
Observations from home — favorite subjects, sensory preferences, and supports that work well (weighted lap pads, wiggle cushions, chewing gum).
More from Sharon: Knowing the signs of autistic burnout, and having a few ways to support your child through it, can make back-to-school time much easier — for the whole family. Read Sharon's full article here.
🚌 A Model for the Future of NYC Busing?
More than 2,000 students with disabilities could start the school year without bus service. Routes sit unassigned because the city lets bus companies choose from a list — and companies tend to refuse the most complex routes, since they cost more to staff. Those are disproportionately the routes serving kids with disabilities.
That's the coverage problem — no bus at all. A separate, older failure mode is what happens on the buses that do show up: wrong rosters, missed pickups, no way to know where your kid is. One nonprofit bus vendor, NYCSBUS, is trying to fix that end of it.
Why it matters: NYCBUS’ fixes don’t address the structural stuff — routing, staffing shortages, systems that don't talk to each other. But they close the gap between what's supposed to happen and what really happens on difficult mornings. They’re also the kinds of fixes other vendors could copy.
What can go wrong: For example: A less-verbal child was sent to the wrong school for almost two weeks — the bus roster had bad information, and the note with the correct school was buried in her backpack where nobody saw it. "She wasn't going in and showing everybody the flyer," said Sara Catalinotto, who runs Parents to Improve School Transportation (PIST). "It was inside of her backpack, the note from mom." Her advice: "Communicate up front and try to make a team with your bus team and yourself, because you can't really rely on the GPS or anything else."
One fix: Starting this year, NYCSBUS, run by Matt Berlin (former head of the city's Office of Pupil Transportation), will text parents a live GPS tracking link — no app, no login required.
"Rather than fight about whether Via is working, we just have a system to just text a link," Berlin said. "We hit a button. A link comes. You can see where the bus is."
It runs on a separate GPS system from Via, so it still works on mornings the official app doesn't.
What it means for parents: A tracking link won't catch a wrong address on a roster. But paired with Sarah's advice — get in front of your bus team directly, don't just trust the paperwork — it's one more way to know where your kid is when something doesn't feel right.
🗳️ The Moment That Summed Up the IACC Vote
The RFK Jr. Watch continues to tick: On August 27, the Interagency Autism Coordinating Committee (IACC) approved a plan nearly doubling autism research spending, from $390M to $747M — including $45M for a vague "immune and inflammatory" category likely to fund vaccine-and-regression research.
Why it matters: A federal member's accessibility objection was overruled in real time — then symbolically honored seconds later, exposing a gap between accommodation and actually being heard.
Driving the news: Committee members got 5,265 public comments less than 24 hours before the vote.
Federal member Scott Robertson, who is autistic, said the timeline made it impossible to process the material and may violate disability-accommodation law. He called it "unprecedented from my experience" on federal committees.
Chair Sylvia Fogel cut in: "This committee is focused on urgency and action, and different people have different priorities." She argued the plan reflects two decades of ignored comment, not just the last 24 hours.
That answers a different question than Robertson asked. He wasn't objecting to the plan — he was making a specific accommodation request tied to the Rehabilitation Act. Fogel never addressed it directly, though she later told Science she was "sympathetic" and cited scheduling pressure.
Zoom in: Public member Honey Rinicella responded to Robertson next: "I want to ask that you respectfully learn who you're speaking to... We represent a vast majority of the community." The room applauded with jazz hands instead of clapping — a noise accommodation Robertson himself had requested earlier in the meeting.
The irony: The room honored his accessibility request. It ignored his point.
By the numbers:
Autistic public members on IACC: down from 7 to 3 since January
Vote for funding: 26 in favor, 1 opposed, 13 abstentions (all 13 from federal agency members)
All 6 "yes" federal votes were Trump appointees; 2 installed that same week
What to watch: HHS Secretary RFK Jr. has replaced IACC's entire public-member roster since January. [Our full review →]
🎙️ Introducing: Jenn Choi, Lighthouse's Newest Columnist
We're thrilled to welcome Jenn Choi — founder of Jenn Choi Advocates, a fixture at City Council hearings, and a longtime guide for NYC families through the IEP process — as a regular voice at Lighthouse.
Why it matters: Jenn’s first column topic is the one parents are asking about most right now (aside from busing nightmares): NYC's new school avoidance settlement, and how vague its language really is.
Driving the news: Jenn's first flag — the settlement never actually defines its own key terms.
"There's still no official DOE definition of 'school avoidance,'" she said.
"The settlement introduces terms like 'School Avoidance Liaison' and 'Attendance Success Plan' without spelling out exactly what they should look like day to day."
Zoom in — undefined terms aren't a dead end:
"If your school seems unsure how to implement them, that's not a dead end — it's proof your school needs help, and a sign to push harder, not back off."
What it means for parents:
"Write down what you're seeing: the mornings, the nurse's office calls, the meltdowns before drop-off," Jenn said. "In the absence of an official definition, your documentation is often what convinces a team to act."
"Ask for these supports by name. If the answer is no, ask why, get it in writing, and escalate — starting with the Liaison, then the IEP team, then DOE's central office."
🔦 Meet the Man Grading NYC's Special Ed System
Service Order = DOE acts (e.g., an evaluation). Payment Order = DOE pays (e.g., tuition). On time = within 35 days.
You've probably never heard of David Irwin. He's the Special Master — a title with a hint of Dumbledore — appointed by a federal judge to make sure the DOE fulfills 51 court-ordered obligations to NYC parents. He co-founded Thru, a consulting firm that works with school districts around the country, and got his start in city government at NYC's budget office under Mayor Giuliani.
Why it matters: NYC has been under a legal deadline to fix special education due process since 2007. It's still missing that deadline most of the time — but Irwin's data (above) shows measurable movement.
How we got here:
2003: Advocates for Children sued the DOE on behalf of 8 families whose kids won hearings for services — tuition, evaluations, therapy — DOE simply wasn't delivering.
2007: Settlement sets the rule still in force today — DOE has 35 days to implement any hearing officer's order.
DOE missed it for over a decade. That’s a long time.
2021: Irwin appointed as independent watchdog after families went back to court.
2022: His first report finds the core problem is operational — DOE running everything on handwritten forms.
July 2023: A federal judge turns his recommendations into a formal order — 51 specific requirements, each with its own deadline.
By the numbers — the problem:
NYC processes ~25,000 due process cases a year, still handled largely by hand.
Districts around the country a fraction of DOE's size, some with a couple dozen due process cases, handle it the same way.
Zoom in — where DOE stands:
30 of 51 court-ordered requirements are done. Among the improvements: SupportHub, an interim portal where parents can upload documents directly to DOE.
Staffing is up: DOE's implementation unit has grown to 90 people, "woefully understaffed" before, said Irwin.
One obligation moved backward: DOE was flagged as compliant on urgent-case handling, then un-flagged after advocates (parents, lawyers) told Irwin it wasn't happening. "DOE couldn't demonstrate they had a process in place," he said. "It's the only one I've unfulfilled."
More numbers — the progress, tracked over time:
Source: Guidehouse Independent Auditor Reports, March 2025 and January 2026, via Special Master David Irwin.
This chart tracks how often DOE delivered on eight categories of court-ordered payments. Two categories went to zero. ABA Therapy was making real progress as of March 2025 (22.6% timely implemented), and Private Evaluations Ordered showed some movement too (4.9%). By January 2026, both had fallen to 0.0%. Tuition moved the other way — nearly doubling, from 16.5% to 32.4%, the strongest gain in the table.
Between the lines: All of this reflects DOE's current, manual system — the one the next fix is meant to replace. Every order today still arrives as a Word document, gets emailed to a person, and gets unpacked by hand.
Driving the news — the fix, IHMS (Impartial Hearing Management System)
A $30M+ system IBM has built since 2022, managing due process start to finish.
Documentation submitted once won't need to be resubmitted later — a standing parent complaint Irwin says IHMS is designed to fix.
Parents won't learn a new system — IHMS runs through NYCSA, the portal families already use.
What it means for parents:
"Eventually, parents will have a portal where they can see exactly the status of their case, their tuition reimbursement, who has it, where it is, what the timeline is," Irwin said.
His own comparison: "It's like ordering a Domino's pizza — there's a tracker. Where's my pizza? Parents' biggest frustration is: where are you in the process?"
On tuition reimbursement specifically: "A hundred percent" faster once live, he said — "right now it's all manual."
The bottom line: "I don't want to paint a rosy picture that this is anywhere near done," Irwin said. "DOE has a roadmap — but 20 of the 51 obligations are still not done." His own hope: "It doesn't help me to continue this work forever. I'm not effective in my role if we're not helping DOE fulfill their obligations."
🏛️ "This Is a War We're Fighting": Inside D75's Council Meeting
NYC's paraprofessional shortage was the most urgent topic at September's D75 Council meeting. CCD75 member Christi Angel isn't waiting on the DOE to fix it alone.
In her words: "This is a war that we are fighting. We do not have enough people. They are not highly paid enough, and it will take a majority of us to continue this work."
Angel has run a CUNY-linked recruitment pipeline since 2024, in partnership with the UFT and DIAL. Any interested adult can tour a working D75 classroom and meet school leadership — and leave nominated into the substitute paraprofessional pool.
Zoom in — the rest of the meeting:
Resolution 18 (Angel's own, co-sponsored with Kristie Montalvan): calls for fixing unequal gym, auditorium, and lab access at co-located D75 programs. Her status report — some pieces moving, others stalled — came with a promise to keep pressing individual principals directly.
Transitions: The committee is starting fresh this year. At the meeting, they asked parents in the room to name their top three priorities — no formal process announced beyond that.
Home instruction: First real DOE movement in months — council contacts met with DOE's home instruction lead, with a full presentation expected next meeting.
Sensory libraries: Already live in the Bronx and Brooklyn; a council member is now organizing to bring one to Queens.
What it means for parents:
These are live issues. D75 parents describe placements far from home despite nearer seats, no ability to tour a school beforehand, and no kindergarten orientation before day one. Want the council to hear something, on any of this? Email [email protected] — the official CCD75 inbox, staffed and monitored.
🏫 A Head of School's Message to City Hall
We recently spoke with Dr. Francis Tabone, head of school at Cooke School and Institute, about what he looks for in a relationship with the mayor's office.
Why it matters: Schools like Cooke exist because the DOE can't serve every kid — but Tabone said he never hears from the city. “They don’t talk to us,” he said. Could an ear in City Hall mean more support for the private special ed schools thousands of NYC families rely on?
Driving the news: "The mayor is too generalized," Tabone said. "I care about his education people. We need them to come and talk to us."
His pitch to them:
"We're serving the same kids the city isn't meeting the needs of. Instead of just throwing more money at this problem, you need satellite systems like us, to take the overflow, and to specialize in the kids that generic curriculums are not reaching."
Zoom in — one relationship that's working: Tabone pointed to former City Comptroller Brad Lander, now running for Congress in NY's 10th District, as a rare City Hall ally.
"We made a lot of progress with Brad Lander. He loves us. He thinks we're the way the city needs to go, which I agree."
"I think the boutique-style satellite schools in each borough can take the pressure off the DOE."
💬 Quotes
“It's okay to call your superintendent's office and say, 'Everybody at my school is nice to me. They're trying, but I am very worried, and I need more help. Please help us!” — Jenn Choi, parent advocate
"People are like, 'What's it like being a psychologist when you have two little kids?' and I'm like, it's exactly like being a parent and not being a psychologist." — Dr. Katie Davis
“Hoping for some kind of magical solution in the public school system… It’s like that dream of the extra room in your apartment. It’s not there. If it were there, you would know about it.” — Sarah Birnbaum, parent advocate
📌 What Parents Have Been Reading in Lighthouse
A free, faster path to an autism evaluation exists — most parents just don't know it's there. We didn’t. Read how it works →
We fact-checked with a special ed lawyer dozens of IEP "rules" parents swear are true — some are, some aren't, some never were. Read the verdicts →
Our most-read piece this month: Parent advocates! What special education advocates do, who they are, and how to find the right one for your family. We spoke to several of them and here’s a list: Start here →
👀 What we’ve been reading
A touching and alarming piece from Gary Blumenthal, a former Kansas state legislator and Clinton/Obama disability official, on what new Medicaid work requirements and a DOJ challenge to disability protections could mean for his 69-year-old brother, who has autism. Read it →
Mama Bear, from the NY Post: When her nonverbal son's AAC device died mid-meal, he grabbed a napkin and drew a keyboard to keep talking — so his mom got one tattooed on her arm, permanently, so he'd never lose his voice again. Read the story →
Newsweek’s been doing some decent reporting on Autism. Here’s a story about an 11-year-old who “doesn't like to draw at home” who surprised his mom with a stunning whale painting she never knew he had in him. Now he's making sculptures too. See the painting →
🎨 This Month in Art: "Together" — part of a collage by graduating students at P231K@322, from the D75 Arts Showcase at the Guggenheim.
A part of a larger collage from a District 75 art class, made to say goodbye to classmates who are graduating. Students layered photographs of their own classroom with acetate painting and line work, inspired by artist Robert Rauschenberg. “We will miss our graduating friends.” (P231K@322, teacher Katherine Hausenbauer-Koster)
📅 Events: What’s Happening?
Here’s our enhanced special needs/autism-friendly event section. If you know of events or organizations that should be listed here, please email us at [email protected]
NYC Buddy Walk® — Sat, Sept 12, 10am–2pm — Central Park, NYC — Event info
Dad Connect: Fathers Group — Sun, Sept 14, 7pm — Virtual — Register
ACANY Community Networking Event — Tue, Sept 15, 10am–2pm — NY Botanical Garden, Bronx — Event info
Turning 5 Talks — Wed, Sept 16, 6:30–8:30pm — Virtual — Register
Understanding the IEP and Special Education Process — Thu, Sept 17, 5:30–7pm — Tompkins Square Library, Manhattan — no link in source doc
Discovery Squad Tours — Sat, Sept 19, 9–10:30am — AMNH, Manhattan — Tickets
12th Annual Inclusive Services Family Resource Fair — Sat, Sept 19, 11am–2pm — Brooklyn Public Library Central Plaza
MEADOW SONG — Sat, Sept 19, 5:30–7pm — Greenway Botanical Garden, Brooklyn — Reserve your spot
Dive Into Inclusion — Sun, Sept 20, 8:30–11am — DreamWorks Water Park, NJ — no link; call 551-343-6031
Puppet Prom — Thu, Sept 24, 6–9pm — Museum of the Moving Image, Astoria — Register
Introduction to Transition Planning — Thu, Sept 24, 5–6:30pm — Virtual — Register
Fall Into Advocacy — IEP Fair 2026 — Sat, Sept 26, 10am–2pm — P.S. 91, Glendale, Queens
Early Morning Opening: A Day in the Life — Sat, Sept 26, 8:30–11am — Intrepid Museum, Manhattan — Event info
Bilingual Broadway en Vivo — Sat, Sept 26, 11am — Lincoln Center, Manhattan — Event info
District 75 Back to School Bash — Sat, Sept 26, 10am–3pm — Jacob Javits Center, Manhattan (check for details)
Bronx Classical Kids Fair — Sun, Sept 27, 12–4pm — University of Mount Saint Vincent, Bronx — Event info
Stars of the Spectrum Concert — Sun, Sept 27, 11am–1pm — Irving Plaza, Manhattan — Tickets
INCLUDEnyc 5K — Sun, Sept 27, 10am–1pm — Flushing Meadows Corona Park, Queens — Register
The Great Gatsby — TDF Autism Friendly Performance — Sun, Sept 27, 1pm — Broadway Theatre, Manhattan — Access via TDF
Costume Contest — Sun, Sept 27, 3pm — Museum of the Moving Image, Astoria — Enter the contest
BBQ for All 2026 — Sun, Sept 27, 11am–4pm — Staten Island — Buy tickets
For more details, registration, and accommodation information, go to the full events page here.
Please pass this newsletter on to a family that can use it.
And thank you Dolly for all that you did.