If you remember one thing, remember this. Everything confusing that follows comes from
it.
Say the child is Sam, eighteen months old. You are Sam’s mother. Each stop
introduces whoever newly appears, marked in green. Orange dots are the traps. Under each trap is what we would build, typed at the top right:
18 months
Something feels off
Sam doesn’t look at people much, doesn’t turn when called, doesn’t point. You
search online and the more you read the more frightened you get. The paediatrician says “let’s
keep an eye on it.”
No organisation appears at this stop. Nobody has a legal duty to find you here. Autism
screening at 18 and 24 months is a professional recommendation, not a duty with a consequence
attached.
How, exactlyWhen the doctor says “let’s wait,” you do not have to. To find which regional centre is yours: search “DDS find your regional center” and enter your zip code, or search “regional center” plus your county. There are 21; every county belongs to one. Write down its Early Start intake number.
Trap: parents notice at 1.75 years on average, first raise it at 2.5, and reach
a diagnosis at 4.2. Two years and more of waiting in between — and the next stop tells you
you were never waiting on anyone.
AWhat we would buildWhat it isA card with one sentence and one phone number: “You can refer your own child, today, free, and they have 45 days. Call: ___.” A QR code to The First Ninety Days. English, Spanish, Chinese.Who it is forA parent who has not yet met any organisation — sitting in a paediatric waiting room, or asking a parents’ group chat “is this normal?”What the parent seesA card, or a picture someone forwarded. Two things stick: you don’t have to wait for the doctor, and here is the number.How it reaches themThis is the hard part, because this parent is not in any system yet and nobody knows her. Three routes only: paediatric waiting rooms; Family Resource Centers, who already do outreach; parents forwarding it to each other.What we doDesign the card. Then call Family Resource Centers and paediatric clinics, one by one, and ask. This is asking favours. A product cannot do it alone.
19 months · you make one call
The regional centre appears
Regional Center
You look up which regional centre covers your address and phone it: “I’d like an
Early Start evaluation for my child.”
Early Start is California’s early-intervention programme for children under three,
run by the regional centres. The law says: anyone may refer, including the parent; no
doctor’s referral and no diagnosis are needed; from the day they receive the referral they
have 45 calendar days to complete the evaluation and hold the first planning meeting; and the
evaluation, the plan and the coordination are free at every income.
The bar is low: a 25% delay in any one area of development (language, for instance), or a
known high-risk condition.
How, exactly
- Say this sentence: “I’d like to request an Early Start evaluation for my child.” They will ask the birthday, your address, and what worries you. Be specific: “doesn’t respond to her name, doesn’t point, doesn’t look at people.”
- Before you hang up, ask three things: “Does today count as day one of the referral?” “Is there a case or confirmation number?” “Roughly when will the evaluation be?” Put the date and the number in the folder. The 45 days run from the day they receive the referral, so that date matters.
- The evaluation is usually at your home or the centre’s office, one to two hours: a developmental specialist plays with your child and observes, and asks you questions. Bring: anything a doctor wrote, and videos you took of the behaviours — few things are more persuasive than a video.
- If the result is “not eligible,” you get it in writing. You have the right to dispute it. Call the Family Resource Center first (next stop) — they will walk you through it.
Money: none yet. This step is free.
21 months · within the 45 days
An evaluation, a plan, and “your person”
Service coordinator
Family Resource Center
The regional centre evaluates Sam, then holds a meeting and writes a plan called an IFSP
(Individualized Family Service Plan). It says which services Sam gets, how often, from whom, and to
what goal. You are a legal member of that meeting and you sign the plan.
The regional centre also assigns you a service coordinator — from now on, your person
there. In law (W&I §4647) they are responsible for “securing”
the services in the plan and for “monitoring implementation … to ascertain that
objectives have been fulfilled.”
You are also pointed to a Family Resource Center: run by parents of children with
disabilities, free, no eligibility check and no diagnosis needed, and they will explain all of
this in your language. Forty-seven of them statewide, contracted directly with DDS.
How, exactly
- Before the IFSP meeting: write down the three things that worry you most and bring the list. You may bring anyone — a friend, a relative, a parent from the Family Resource Center. You may ask for the meeting, and the plan, in your language.
- Get these written into the plan: for every service, the start date, who provides it (the agency’s name), and how many sessions a week for how long. A service with no start date has no start date. The law requires the meeting within 45 days; it sets no deadline for the first session — so you ask for a date and get it on the page.
- You do not have to sign what you disagree with. You can sign for the parts you agree with; those start regardless.
- After the meeting: get the coordinator’s direct line and email. The IFSP is reviewed every six months and rewritten yearly; in between, the coordinator does not call you. You call them.
- The Family Resource Center: if nobody mentions it, ask the coordinator: “Which is my Family Resource Center?” Get the number, call that week, and say “we just started Early Start and I’d like to introduce myself.”
Trap: the law sets a coordinator’s caseload at an average of 62
children (1:40 for under-fives), with up to 79 allowed for stretches of 60 days.
“Securing the services” — one person, sixty-two children. You can picture it.
DWhat we would buildWhat we cannot changeSixty-two children per coordinator is set by law and budget. Not ours to move.So what does a parent doAccept one fact first: the coordinator will not call you. There is no time. So the only end that can change is yours — you become the person who knows the dates and the questions. A parent with the calendar (explained over the next stops) calls and says one sentence: “Sam is two and a half — when is the transition meeting?” The coordinator answers one sentence; three minutes. A parent without it calls and says “I don’t know what I’m supposed to do,” and the coordinator spends twenty minutes explaining, often incompletely, because there are 61 others.Who it is forThe parent. Not the coordinator. It is a series of reminders sent on specific dates — text, email or WeChat, the parent’s choice — plus a web page. Not an app. Nothing to download.What the coordinator’s role isNothing to do, nothing to learn. But they meet dozens of new families a month. If they hand a parent the link — “sign up for this, it reminds you of every date” — the calls they get become shorter and fewer. They are the person who passes it on, not the person who uses it. That is what “distribution channel” means. One distinction matters: the coordinator benefits incidentally; they are not who it is designed for. Design for the parent, and some of what results happens to save the coordinator time — that part is what buys their willingness to hand over a link. Design for the coordinator instead and the easiest thing to build is something that makes parents call less; taken to its end that is a page saying “don’t worry, your coordinator will be in touch” — exactly the sentence this document exists to contradict. The clearest case: the “thirty days, not sixty” message makes more parents appeal. Good for the parent, more work for the coordinator. Designed for the coordinator, that message would not exist.What that link isIt does not exist yet. It would point to the calendar’s sign-up page: one screen, four fields — child’s birthday, county, insurance type, how you want messages (text/email/WeChat) — and one button. The parent fills it in, the page tells her when the first message will arrive and what it will say, and she can close it. Until it is built, what a coordinator can hand over is the existing guides page (/autism/guides) — but that is something to read, not something that reminds; a person reads it once and forgets, and nothing nudges her at two and a half. The existing pages are a stopgap; the calendar is what makes the hand-over worth it.What we doBuild the calendar (next stops). Write a one-page note for coordinators that says exactly one thing: “give parents this link and your calls get shorter.” Meet three to five coordinators through Family Resource Centers and ask them to try it.
22 months · therapy starts
The provider appears
Provider / therapist
The plan says “ten hours a week of behavioural intervention.” “Behavioural
intervention” nearly always means ABA (Applied Behavior Analysis), the therapy autistic
children are most often given. It looks like this: a therapist comes to the house or the clinic a set
number of times a week, works one-to-one with the child, breaks a skill (saying “more,”
looking at a face, sitting for five minutes, putting on shoes) into very small steps, rewards each
step at once, repeats it, and records every attempt. So it is many hours (ten to forty a week
is common), a lot of data, and supervised. The plan may also list speech therapy
(talking), occupational therapy (hands, senses, daily living) and physical therapy (large movement)
— under three, the regional centre files those three as “Early Start specialized
therapeutic services.”
ABA is contested in the autism community: many autistic adults oppose it as training a
child to look typical; supporters point to data on early, intensive intervention. This page does
not settle that for you. One useful question to any agency: “What do you do when the child
doesn’t want to?” The answer tells you a lot.
Who does it? The regional centre pays only agencies it has a contract with, and that list
— the vendor list — is something the centre publishes itself. It is not part
of the plan: the plan says what service; the list says who may provide it. The centre assigns
an agency from the list, or you pick one from it — you are entitled to choose. That agency
sends someone to work with Sam.
This is the only party in the whole system that actually does the work. Everyone else pays,
plans, or adjudicates.
Money: regional centre → paid directly to the provider. You
are not billed and you are not reimbursed. It does not pass through you.
Does insurance pay for the agencies on the list? Can I use my own insurance at the same
time? Agencies on the vendor list are paid by the regional centre — that is what
the list means: the agencies the centre will pay. Your insurance has its own list, called
“in-network,” and one agency can be on both. Under three, services written into the IFSP
are free to the family and the centre pays directly; you do not have to touch your insurance, and
your private insurance may only be used with your written consent (federal rule,
34 CFR §303.520) — the coordinator may ask you to try it, and you may say
yes or no. Nothing stops you going to your insurer directly as well — a plan’s duty to
cover ABA does not depend on the regional centre (SB 946) — but under three there is usually
no need. After three it flips: the centre becomes the “payer of last resort” and
insurance must come first, which is why both lanes run at once from then on (a few stops
below). For now, one question to the coordinator: “Is this service paid directly by the
regional centre, or do I need to apply to my insurance first?” Put the answer in the plan.
How, exactly
- The coordinator gives you names, or you ask: “Can I have the vendor list for this service?” Then call each one — the four questions are below. We have compiled the lists too: for the regional centres that publish a readable vendor list, we merged them and made them filterable by county, under “Services near you” at powerpluspartner.com/autism. For the centres that publish none, the coordinator is the only source.
- Who shows up: usually a behaviour technician (RBT) for the daily sessions and a behaviour analyst (BCBA) who writes the programme and supervises. You may ask: “How often does the supervisor come? Will I meet the BCBA?”
- You can switch. Tell the coordinator “I’d like a different agency” — the plan gets a new name on it, and there is no penalty.
Trap: whether an agency can see Sam depends on three things that have
nothing to do with Sam: whether it is contracted with your payer (on the regional
centre’s vendor list, or in your plan’s network); which services, and how many hours,
that payer approved; and whether it has staff right now. “We can’t do that” is,
nine times out of ten, one of those three. Parents often hear it as “my child isn’t
a fit.” It isn’t that.
AWhat we would buildWhat it isA page, Four Questions First, already made. On it: the four questions, what a good answer to each sounds like, and a table to note what each agency said.The four, and why in this orderKnock-out order. First: “Are you contracted with [my regional centre]?” — if not, the centre cannot pay them and the other three do not matter. Second: “Are you taking new children?” Third: “Do you take [my plan]?” Fourth: “Do you see children [my child’s age]?” Four questions, three minutes, and what it saves is a whole call that goes nowhere.What the parent seesOpens the page before dialling, asks in order, ticks the table as she goes. After ten calls the table shows at a glance who is usable.How it reaches themThe calendar sends a link to this page at the “therapy starts” stop; the Family Resource Center hands it out; the coordinator sends it along with the vendor list.What we doThe page exists. What is missing is distribution — those three routes.
AAfter the four · four kinds of answer, four next stepsAll four yesAsk a fifth question on the spot — “When can you start, and what do you need from me?” Usually an authorisation from whoever pays. Then tell your coordinator today: “I found X, they can take us, please send the authorisation.” Nothing starts until it goes out.No to the first — not contractedUnder three, that call is over; next agency. Three and over, if they take your plan they can see your child through the plan instead. You can ask the coordinator whether the centre would contract them — it can, but it takes months. Don’t wait on it.Contracted but not taking new childrenAsk three more — “Do you keep a waitlist? How long? Do you know anyone taking families right now?” Get on the list, note the date, keep calling.Doesn’t take your planUnder three it doesn’t matter; the centre pays. Three and over it does — next box.Where this livesAll of it is on the Four Questions First page, under the four questions.
AIf everyone says no — that is not failure, it is evidenceWhat the parent doesWrite every call down: who, when, who answered, what they said (the page has a log). Then take the log back to whoever is supposed to pay. To the coordinator: “I called these eight. None are taking. Securing the services in the plan is the regional centre’s job under the law — what is the next step?” A documented search is what moves a centre to authorise a different provider type, contract a new one, or arrange something else. “I can’t find anyone” with no list gets you “keep looking.” To the plan, three and over: California requires a plan to offer a non-urgent mental-health appointment within 10 business days. If nobody in its network can, the plan must arrange care outside the network at in-network cost. Ask for that in writing, log attached. If the plan refuses, the DMHC Help Center is free and this is exactly what it is for.What the calendar does hereThe call log lives in the parent’s own browser; we cannot see it (it is a record about her child and should not be in our hands). So the calendar does not know how many she has called — she presses a button, “I’ve called five and none can take us,” and only then a message: “Five have said no — your log is now evidence. Send it to your coordinator today; here is the sentence: ___. Three and over, send it to the plan too; here is that sentence: ___.” The parent does not have to remember on her own that it is time to escalate.In one lineThe log is not a record of what went wrong. It is what turns “nobody will see my child” into somebody else’s obligation.
ABoth at once, or one then the other? It depends on ageUnder threeThe coordinator route only. The plan has not entered yet.Three and over: both at once, and it has to be bothFirst reason: the plan route is the key to the regional-centre route — the centre will not pay until it sees the plan’s written refusal, so going to the plan is fetching the piece of paper the centre needs. Either the plan arranges care (it pays; done) or it refuses in writing (forward that to the coordinator; the centre now has to move). Both outcomes are progress. Second reason: while you wait for the plan, the regional centre can pay in the meantime. The statute (§4659(d)(1)) names three situations where it may: while coverage is being pursued and before a denial; while an appeal is pending, if you give the centre proof you are appealing; and after approval but before the plan’s services start.Day oneTwo letters, same day. To the plan: request an out-of-network arrangement, log attached. To the coordinator: log attached, “I am pursuing coverage — under §4659(d)(1)(A) please authorise in the meantime.” Almost no parent knows this clause, which is why families sit for months between the two.Once the plan refusesForwarding the letter to the coordinator and filing with DMHC also happen together, not in sequence. No answer from the plan in 30 days counts as a refusal.What the calendar does hereThe parent presses “I wrote to the plan today.” On day 30: “Has the plan answered? No answer counts as a refusal. Two things to do today: ___.”In one lineAfter three, the plan and the coordinator are not two routes. They are two ends of one rope, and you pull both.
2 years 6 months · preparing for three
The transition meeting: the school district appears
School district
California requires (17 CCR §52112) that before Sam is two years and nine
months, the regional centre notify the school district and hold a transition meeting with a
district representative present, and send the district a formal referral.
This is the only place in the entire system where the law requires two organisations to
talk to each other directly — regional centre to district, one notice. Between every other
pair of organisations, there is no line at all.
How, exactly
- At two and a half, ask the coordinator: “When is the transition meeting, and is the district coming?” If they say “it’s early,” say: “The rule is before two years nine months; I’d like the date set.” Ask for it in writing.
- What happens at the meeting: the district sends someone to explain its assessment process. Two things you can do on the spot: sign consent for the centre to send Sam’s records to the district; and hand the district representative a written request for assessment — that starts the district’s 15-day clock that same day (see the district stop below).
- Note: the district’s assessment and the regional centre’s age-three re-evaluation are two different things done by two organisations, and they can run at the same time.
Trap: as of February 2025 the state counted 6,929 children past their
third birthday still on the Early Start books, up 22.5% in a year. The US Department of
Education rated California’s under-three programme “Needs Intervention”, scoring
zero on both transition measures because California’s own data were unreliable. So: whether
this meeting actually happens, you watch. At two and a half, ask the coordinator one thing:
“When is the transition meeting scheduled?”
AWhat we would build · this is “the calendar”What it isThe parent enters three things on a web page: the child’s birthday, the county, the insurance type. From then on, messages arrive on specific dates — text, email or WeChat, her choice. Each message says one thing: what should have happened by today, and what to say if it hasn’t.What the parent seesAt 2 years 6 months, on her phone: “Sam is two and a half today. The transition meeting must happen before two years nine months. One thing to do today: call your coordinator and ask ‘when is the meeting scheduled?’ If they say it’s early, say: ‘The rule is before 2y9m; I’d like the date set.’” At 2 years 9 months, another: “The district referral should have gone out by today. Call to confirm. If it hasn’t, send your coordinator this: ___”Why this is the coreBecause the fix for this trap is a date. No database can tell a parent “your child is two and a half today and this is the question to ask” — a birthday can. It is the cheapest and most certain thing in the whole product.How it reaches themThe parent signs up herself. Who tells her it exists: the Family Resource Center (they are with the family through the whole under-three period), the coordinator (previous stop), our page.What we doBuild it: a sign-up page, a back end that sends on dates, the wording of each message. Start with these two messages, because they are the most important and the least recoverable if missed.
The third birthday · three things happen the same day
The age-three handoff
First: the money changes pockets. The regional centre drops from “the payer” to
“payer of last resort” (W&I §4659). The statute’s own words:
for a child three or older, a regional centre “shall not purchase medical or dental services
… unless the regional center is provided with documentation of a Medi-Cal, private insurance,
or a health care service plan denial.” In other words, you go to your insurance first.
Second: the eligibility test changes. Before three it was a 25% delay in one area. At three
Sam is re-evaluated: provisional eligibility for ages 3–5 needs significant limitations in
two major life areas; full Lanterman eligibility needs substantial disability in three or
more. Some children fall out here.
Third: the people who have been helping you age out. The Family Resource Center serves
families of children under 36 months. On Sam’s third birthday, it graduates too.
How, exactly
- The regional centre’s re-evaluation: after three, eligibility is under Lanterman rules and usually needs a formal autism diagnosis from a psychologist or developmental paediatrician. If Sam does not have one, ask the coordinator at two and a half: “What does the age-three eligibility evaluation need? Do you arrange the diagnosis or do I?” The centre can arrange it and pay for it.
- Do not let the birthday open a gap: Early Start ends on the third birthday. The goal is that before that day the district’s IEP is in place and the centre’s re-evaluation is done. Both clocks are yours to push.
- On the birthday, three things: keep a copy of the centre’s new plan (after three it is no longer an IFSP but an IPP, Individual Program Plan — same content: which services, who provides them, how much) and the district’s IEP; ask HR whether the plan is self-funded (the company pays the claims itself and the insurer only administers — why that matters is the next stop); put the Family Resource Center’s “who comes next” answer in the folder.
Trap: nobody tells you any of these three in advance. The single
most useful thing you can do at two and a half is ask the Family Resource Center:
“After three you can’t help me — who should I go to next?”
AWhat we would build · same calendar, sent three months earlyWhat the parent seesThe 2y6m message has a second part: “On the birthday in three months, three things happen at once: the regional centre becomes payer of last resort; the eligibility test gets stricter; the Family Resource Center ages out. Two more things to do today: ask the FRC ‘after three you can’t help me — who should I go to?’; ask HR ‘is our plan fully insured or self-funded?’ Put both answers in the folder.”And thenThe 2y9m message adds: “The age-three re-evaluation usually needs a formal diagnosis — ask the coordinator whether it is arranged.” On the birthday itself: “Early Start ends today. Check: is the district’s IEP in place? Is the centre’s new plan in place? If neither, call the Family Resource Center.”What we doWrite these three messages. The system is the same one as the previous stop.
3 years 1 month · going to the insurer
The health plan appears, and a letter
Health plan
The provider asks your plan to authorise treatment. California’s SB 946 requires plans to
cover behavioural treatment for autism (ABA and similar). The plan may approve. It may refuse. If
it refuses, you receive a refusal in writing.
Then — you take that letter back to the regional centre. Only when the regional centre
sees the written denial, and judges that an appeal would not succeed, can it start paying again.
Why are you carrying the letter? Because the plan and the regional centre have no channel
between them. They do not report to each other and they do not communicate. You are the
courier.
How, exactly
- Find out what your plan is: the card. The company on the card is the plan; for Medi-Cal, the card names your managed-care plan (L.A. Care, Health Net, Kaiser, and so on). Employer coverage: ask HR, “fully insured or self-funded?”
- The agency requests the authorisation for you, but the plan will almost certainly want the formal diagnosis report and a doctor’s referral or prescription. Have both in hand and give them to the agency. Without a diagnosis the authorisation goes nowhere — which is why the diagnosis should be sorted before three.
- The refusal letter: the plan must state its reason and your appeal rights in writing. Photograph it, file it, keep the original. It is the key to every later step.
- The plan’s internal appeal: call the number on the card or write, and say “I am filing a grievance/appeal of this decision.” The plan must answer within 30 days (3 days if urgent). Only after this step — or after 30 days with no answer — can you go to DMHC for outside review.
Money (if approved): plan → paid directly to the provider. Still
not through you. If there are copays or a deductible, a family under 400% of the poverty
line may have the regional centre cover them (under three it must).
Big trap: if your employer is self-funded — the company pays
claims itself and the insurance company only administers them — California’s law does
not reach it; federal law takes precedence. About 41.7% of California private-sector
employees with job-based coverage are in self-funded plans; at companies of a thousand or more it is
58.2%. You can ask HR one question today: “Is our plan fully insured or
self-funded?”
A + BWhat we would build · one sentence, plus a small toolA · the sentenceThe calendar already asked at 2y6m: “ask HR whether the plan is fully insured or self-funded.” The birthday message repeats it. So the parent knows what kind of plan she has long before a refusal, instead of discovering at that moment that California’s law does not reach it.B · what the lookup isA web page with one search box. The parent types the company name from her card and the page says: “This plan is regulated by DMHC. If refused, request an Independent Medical Review: 1-888-466-2219.” Or: “This one is regulated by CDI. Complaints go here: ___.”Why it can be builtDMHC publishes the list of every health plan it regulates; CDI publishes the list of every insurer it regulates. Both public. Pull the two lists into one searchable table — a week’s work. Nobody in California has done it; today a parent learns she filed with the wrong agency by filing with the wrong agency.How it reaches themThe appeals-stop message carries the link; the Four Questions page carries the search box.What we doPull the two lists, build the search page, refresh the lists quarterly.
3 years · in parallel
The district evaluation, and an IEP
You write the district a letter (in writing, dated): “I am requesting a special
education assessment for my child.” The clock starts here:
Within 15 calendar days the district must give you an assessment plan to sign. You have 15
days to decide. From the day you sign, the district has 60 calendar days to finish the
assessment and hold the IEP meeting. (School breaks longer than five days do not count.)
IEP = Individualized Education Program. The district’s written document setting out
where Sam is now, this year’s goals, which services the school provides and how many
minutes a week, what setting, and what classroom accommodations. It is legally binding.
You are a legal member of the IEP team. It is reviewed at least yearly and fully re-evaluated every
three years.
Note that Sam now has two plans at once — the regional centre’s (home and
community) and the district’s IEP (school only). Two documents, two organisations,
neither aware of the other. That is normal.
How, exactly
- Who to send it to: the district’s special education office (search “[district name] special education”). Send it by email so the date is on record, or hand it in and have them date-stamp your copy. Include: child’s name and birthday, your contact details, “I am requesting a special education assessment for my child in writing,” and the areas that worry you (language, social, behaviour).
- The assessment plan is a form listing the tests they intend to do. You may ask for areas to be added (“I am also concerned about sensory / motor”). Sign and return it promptly — the 60 days run from your signature.
- Who is at the IEP meeting: you, a district representative, a general-education teacher, a special-education teacher, the people who did the assessments. You may bring anyone. Ask for the meeting in your language and for an interpreter.
- If you disagree at the meeting: you can sign only the “attended” line and not “consent to all.” You can consent to part — the parts you consent to start regardless. The rest can go to mediation or a hearing.
- Get written in: minutes per week for each service, who provides it, where (in the classroom or pulled out), and when it starts.
Money: the district pays its own speech therapists,
occupational therapists and aides. Not through you; not through the regional centre either.
Trap one: the 60 days run from the day you sign, not from the day you
asked. If you sit on the form, the clock sits too. Trap two: if it is not written in the
IEP, the district does not owe it. A teacher saying “we’ll keep an extra eye on
him” at the meeting is worth nothing unless it is on the page. Trap three: the district
owes only what school requires. After school, weekends, life skills — it may lawfully say
those are not its job.
AWhat we would build · three sentences, one momentHow the calendar knows the momentThe earlier stops are by age. This one is different — the calendar cannot know which day you wrote the letter. So there is a second kind of trigger: the parent tells it. The page has a few buttons: “I sent the district my assessment request today,” “I signed the assessment plan today,” “I received a Notice of Action today.” Press one, and the calendar counts from that day.What the parent seesPress “I sent the request today” and a message arrives at once: “Three things to remember: the district owes you an assessment plan within 15 days; the 60-day clock starts only when you sign, so don’t sit on it; whatever is not written in the IEP is not owed, and a verbal promise is worth nothing.” Day 15: “Has the assessment plan arrived? If not, here is the sentence: ___.” Day 60 after signing: “Has the IEP meeting happened?”What we doAdd the buttons to the page and the message sequences behind them. The content is already in The First Ninety Days; it moves over.
3 years 4 months · somebody said no
Appeals: three routes, three deadlines
DDS
OCRA
Disability Rights California
DMHC
Who said no decides which route you take:
The regional centre said no (denied eligibility, cut a service) → you receive a Notice
of Action. You have 60 days to appeal, and the appeal goes to DDS. But if you want
your current services to continue while you appeal, you must file within 30 days, and
before the change takes effect. File on day 35: the appeal survives, the services stop
first. The numbers say appealing is worth it — in eligibility disputes, roughly 53%
end with the family getting what was refused.
The health plan said no → first the plan’s internal appeal; then ask DMHC
for an Independent Medical Review — free, decided by outside doctors, binding on the plan.
Around 5,200 in 2024; 51% overturned, and in another 22% the plan reversed itself before the
review even started. About three families in four got the treatment.
The district said no → the IDEA process: mediation, a complaint to the state education
department, or a formal hearing (“due process”).
On all three routes there is free help: OCRA (a clients’ rights advocate attached to
every regional centre — free, legally independent of it) and Disability Rights California
(the state’s disability-rights legal organisation, free).
How, exactly
- Appealing the regional centre: the Notice of Action comes with DDS’s appeal form and address. Fill it in, send it (mail or email), keep proof of the date you sent it. The sequence: an informal meeting with the centre → optional mediation → a hearing. You may bring anyone. If the form is confusing, call OCRA (the number is on your regional centre’s website); they help fill it in.
- Applying for DMHC’s Independent Medical Review: online at dmhc.ca.gov or by calling the DMHC Help Center, 1-888-466-2219. You need: the plan’s refusal letter and the outcome of your internal appeal (or proof that 30 days passed with no answer). Free. Standard decision within 30 days; urgent within 3.
- Disputing the district: ask for mediation first (free, run by a neutral third party); if that fails, file for a due process hearing. Disability Rights California has free guides and a hotline.
- On all three routes, do the same thing: photograph every letter, notice and reply into the folder. A piece of paper you can produce at a hearing is worth ten memories.
Trap one: appeal rates per capita vary 19-fold between regional
centres — not because families have 19× more cause, but because 19× more of
them know they can. Trap two: OCRA and DRC say so themselves: they cannot take every case.
Most families get advice, not representation. Trap three: DMHC only covers the plans it
regulates; the rest belong to CDI, the insurance department — and there is no published way
to check which yours is. You find out you filed with the wrong one by filing with the wrong
one.
A + BWhat we would build · the most valuable sentenceWhat the parent seesPress “I received a Notice of Action today” and a message arrives at once: “Thirty days, not sixty. You have 60 days to appeal and the appeal will count; but to keep your current services running while you appeal you must file within 30 days, and before the change takes effect. The form is attached to the notice; if it is confusing, OCRA helps fill it in: ___.” Day 20: “Ten days left. Filed?”If the plan refusedPress “the plan said no”: “First the plan’s internal appeal, 30 days. Check which regulator your plan is under: [link]. After 30 days, request an Independent Medical Review — free, three in four get the treatment.” Day 30 reminder.Why this is worth so muchAppeal rates vary 19-fold between regional centres, and it is not that families have 19× more cause — it is that 19× more of them know they can appeal and know it is 30 days. That is an information gap, and one message fills it.What about legal aid’s capacityWe cannot change it. But a parent who already knows the date and has already filled in the form needs a glance, not a walk-through. The amount of help needed is far smaller.What we doTwo buttons, two message sequences, plus the regulator lookup from the insurance stop.
3 years 6 months · you cannot keep this up
The county appears: the only money paid to you
County / IHSS
Sam needs someone watching around the clock to stay safe — runs out the door, has no sense
of danger. California has a county-run programme called IHSS (In-Home Supportive Services)
with a component called Protective Supervision: the county pays you, hourly, for the
supervision you are already doing — up to 283 hours a month for the most severely
affected. The parent can be the paid provider.
You apply through county social services, and you must ask for “Protective
Supervision” by name.
How, exactly
- Where to apply: search “[your county] IHSS apply”; call the county IHSS line or apply online. Say: “I want to apply for IHSS for my child, including Protective Supervision.” The child needs Medi-Cal — most children with disabilities can get it through the “institutional deeming” route regardless of the parents’ income; ask the coordinator or the FRC about that.
- There will be a home visit. A social worker comes and asks questions. Describe the worst day, not the average day. Be specific about danger: “opens the door and runs toward the road,” “puts things that aren’t food in his mouth,” “gets up at night and wanders.” Say the words “Protective Supervision” and ask the worker to note them.
- A doctor has to fill in a form (SOC 821, the Protective Supervision needs assessment) confirming the child cannot judge danger because of a cognitive or mental condition. Take the form to the paediatrician or the diagnosing doctor.
- Once approved: you enrol as the “provider,” submit monthly timesheets, and the county pays you hourly into your account.
- If refused, or the hours are too few: appeal in writing within 90 days. Existing hours continue during the appeal. If you lose, you owe nothing back.
Money: county → paid directly to you. The only arrow in
this whole picture that ends at the parent.
Trap: the county is required to tell you this exists at assessment.
Almost no family is told. If refused, appeal: 90 days, benefits continue during the appeal, and
if you lose you do not have to pay anything back — that last sentence is the one nobody
knows.
AWhat we would build · two sentences, but the moment is hard to catchHonestlyThe calendar cannot catch this moment. “I can’t keep this up” is not a date, and it is not a button a parent will press.SoPlant it in three places. One: the end of the birthday message — “If your child needs watching around the clock to stay safe, the county has a programme that can pay you; it is called Protective Supervision. No rush, but keep the name.” Two: a page on the site titled “I can’t keep this up,” carrying the five steps from “how, exactly” above, there whenever it is opened. Three: the Family Resource Center — the people most likely to be in the room when a parent breaks — gets that page.What the parent seesOne page: where to apply, what to say at the home visit (the worst day), which form the doctor fills in, and that if refused and you lose, you owe nothing.What we doThat page, that paragraph in the birthday message, and handing it to the FRCs.
Age 4 · it is in the plan, and it didn’t happen
Nobody owns this square
Sam’s regional centre plan says “ten hours a week,” but the agency keeps failing
to staff it — six sessions in three months. You call the coordinator. They say they are
following up.
In law this is exactly the coordinator’s job (§4647: “monitoring implementation
… to ascertain that objectives have been fulfilled”). In practice they have sixty-two
children, and their employer is the organisation that decides whether to pay.
California’s own figures: among regional centre clients aged 3 to 21, 24.7% received no
purchased services at all last year — 66,618 people; and for that age group only 56.6%
of the money that was approved was actually spent. “In the plan, not in real life”
is the normal condition for one family in four, not your bad luck.
And the deeper point: of everything a regional centre is measured on, not one measure is
“the service reached the child.” They count children identified, plans written,
bilingual staff hired, staff trained.
How, exactly
- How to keep the record: each week, the hours the plan says versus the hours delivered. Ask the agency for its attendance or session notes — you are entitled to them.
- Escalating when the coordinator does nothing: first, email the coordinator and copy their supervisor (ask: “who is your supervisor?”). Second, file a §4731 complaint with the regional centre’s director, in writing, stating the service is not being delivered as planned; the director must answer in writing within 20 working days. Third, if the answer is unsatisfactory, take it to DDS within 15 working days — miss that window and the centre’s answer stands by default.
- Every step goes in the folder. That record is the whole of your evidence next time you appeal.
Trap: win your appeal and you get a decision on paper — which goes back
to the same organisation that didn’t deliver the first time. Whether it then happens,
nobody looks back to check. Only you, with a date in your own calendar.
CWhat we would build · the one trap that needs new dataWhat it isOnce a month the calendar asks the parent one question: “Of the 40 hours in this month’s plan, how many actually happened?” She answers with a number.What the parent getsTwo things. First, her own record — three months later, when she escalates or appeals, that is the evidence, with no need to remember. Second, if many families answer, we can see which agencies and which regional centres persistently fall short — something no public dataset in California holds; the State Auditor told DDS to build such a measure and three and a half years later it has not.Why it comes laterBefore asking, several things must be settled, and settled wrong they cannot be undone: who sees the answers? Anonymous? Could they be used against a particular agency? Can a parent delete hers? Those are the consent terms, and whatever version the first parent sees is the only version there can be. So: ten family conversations first, then the terms, then the question.After a won appealPress “I won my appeal” and on day 30 the calendar asks: “Has the service started?” If not, here is the next step. We become the one who looks back — even if only by reminding the parent to.What we doConversations first. Then the terms. Then, and only then, this question.
Age 22
The cliff
The district’s obligation ends. Adult services are discretionary and rationed. National data:
26% of autistic young adults received no services at all in their early twenties; 58%
had ever worked for pay after high school (92% for learning disability); 37% were neither
working nor in education. About 80% of California’s autism caseload is under 22 — the
cliff is not the edge of the system; it is the system’s shape.
DWhat we would build · nothingNot us, not now. The reader on this side of twenty-two is the autistic adult, not the parent — and someone needs to ask them what they want first. It is written here so that its absence is a decision rather than an oversight.
First: what you must hand each party, what it gives back, and what it is on the hook for. Second: where the money goes. Third: everyone drawn against your child’s age.
You have met all of them now. Here is one card each, in the same format, for comparing.
In the order you will meet them.
Early StartCalifornia’s early-intervention programme for children under three. Run by the regional centres. Free. Anyone may refer.
RCRegional Center. Twenty-one non-profits that buy services with state money.
DDSDepartment of Developmental Services. The state department over the 21 regional centres. Never serves a child directly.
IFSPIndividualized Family Service Plan. The regional centre’s plan, under three.
IPPIndividual Program Plan. The regional centre’s plan, three and over.
IEPIndividualized Education Program. The school district’s plan; school only; legally binding.
IDEAIndividuals with Disabilities Education Act. The federal special-education law the district’s duties come from.
LantermanCalifornia’s developmental-services law. The regional centre’s duties come from here.
SB 946California law: plans must cover behavioural treatment for autism. Does not reach self-funded employer plans.
ABAApplied Behavior Analysis. The most common autism therapy: one-to-one, a skill broken into small steps, each rewarded at once, repeated, every attempt recorded; many hours, supervised. Two layers: a BCBA writes and supervises the programme, a behaviour technician delivers it daily. Regional centre codes 612–616 and 515. Contested within the autism community.
BCBABoard Certified Behavior Analyst. The credentialed analyst who leads the team and writes the programme.
RBTRegistered Behavior Technician. The person who delivers daily sessions under a BCBA.
SLP / OTSpeech-language pathologist / occupational therapist. The two most common school-based services.
Medi-CalCalifornia’s Medicaid. Lower-income families’ health plan. Autism treatment comes through its managed-care plans.
DMHCDepartment of Managed Health Care. Regulates most health plans; also the department that runs free Independent Medical Reviews.
IMRIndependent Medical Review. After a plan refuses, outside doctors review it free. About three in four get the service.
CDICalifornia Department of Insurance. Regulates the other plans. No published way to tell whether yours is DMHC or CDI.
NOANotice of Action. The formal letter a regional centre sends when it refuses or cuts a service. Appeal deadlines run from it.
OCRAOffice of Clients’ Rights Advocacy. One advocate attached to each regional centre; free; legally independent.
DRCDisability Rights California. Free legal help.
FRCFamily Resource Center. Parent-run, free, under three.
IHSSIn-Home Supportive Services. County programme that can pay the parent.
Protective SupervisionThe IHSS component that pays for round-the-clock supervision. Ask for it by name.
VendorA provider contracted with a regional centre and able to bill it. The centre’s “vendor list” is who it can send you to.
The fix boxes above keep saying “the calendar,” “that page,” “the lookup.” They are only five things (plus a sixth that grows out of the Four Questions page: the real list), and together they are one website. First a figure and a set of questions on the final shape; then each thing questioned the way you would question it: what is it, is it an app, who fills it in, who sends it, what does the parent see, does it cost anything, does it exist, how would it fail.
Two · The calendar
Used at: coordinator, transition, third birthday, district, appeals, plan-versus-reality — seven of the eight A-type traps
The centre of the plan. A web page, plus a series of messages that arrive on the parent’s phone on the right days.
What is it?
A web page plus a series of messages. The parent fills in the page once; after that, messages arrive on her phone on specific dates. Each message says one thing: what should have happened by today; if it hasn’t, who to call and what to say.
Is it an app? Do I download something?
Not an app. Nothing to download. Open a web page, fill in four fields, close it. From then on the messages come to her; she never has to open anything again.
Who fills in the information?
The parent herself. Four fields: child’s birthday, county, insurance type (regional centre / employer plan / Medi-Cal / don’t know yet), and how she wants messages (text / email / WeChat). Sixty seconds.
Why not have the coordinator fill it in? Then every family would get it automatically.
Three reasons. One: if the coordinator enters it, the regional centre has handed a child’s details to a third party, which is governed by confidentiality law and needs a data agreement signed by the centre — months, and the negotiating partner is the very organisation we are routing around. Two: some messages take the parent’s side (“file within 30 days or your services stop”); if the centre entered the data, the parent would assume the centre sent the message, which makes that sentence strange — and a centre that dislikes the message can simply stop entering families, and the distribution is gone. Three: it gives the coordinator a task, and the point is that he has none. So: the parent fills it in, we send, under our name. The coordinator only hands over a card.
Who sends the messages? Under whose name?
We do, as Power Plus Partner. The parent knows who is talking to her and can reply “stop” at any time.
How do the messages reach the phone?
By whichever route she chose. Text needs a sending service (Twilio or similar, a few cents a message); email is cheapest; WeChat needs an official account. Text and email first.
Exactly which messages does she get, and how many?
About fifteen, spread over two years and more — not a daily nuisance. Two kinds.
Sent automatically, by age:
· On sign-up: confirmation, and when the first message will arrive.
· 2 years 6 months: the transition meeting must happen before 2y9m — ask the coordinator today when it is scheduled; three things happen at once in three months; ask the FRC who comes next; ask HR whether the plan is self-funded.
· 2 years 9 months: the district referral should have gone out — confirm; the age-three re-evaluation usually needs a formal diagnosis — is it arranged?
· Third birthday: Early Start ends today; check the IEP and the new plan; and if your child needs round-the-clock supervision, the county has a programme called Protective Supervision — keep the name.
Sent only when the parent presses a button: a few buttons on the page; she presses one on the day she did the thing —
· “I sent the district my assessment request today” → at once (three things to remember), day 15 (has the plan arrived?), day 60 after signing (has the IEP meeting happened?).
· “I received a Notice of Action today” → at once (thirty days, not sixty), day 20 (ten days left).
· “The plan said no” → at once (internal appeal first; check which regulator), day 30 (request the IMR).
· “I wrote to the plan today” → day 30 (any answer? none counts as a refusal).
· “I won my appeal” → day 30 (has the service started?).
· “I’ve called five and none can take us” → at once (your log is now evidence; send it to the coordinator; here is the sentence).
What if the child is already three when she signs up?
It counts from the birthday; dates already past are not sent; it starts from the current age. Sign up at three and a half and you get the button-triggered ones.
Does she have to reply? What if she doesn’t?
No reply needed. Messages are one-way. The buttons are there if she wants them; if she never presses one, she gets only the age-based messages.
What will we know about the child? Where is it stored?
We know: birthday, county, insurance type, a phone number or email, and which buttons she pressed. We do not know: the name, the diagnosis, the address, any medical information. It sits in our database. She can unsubscribe and ask for deletion at any time, and deletion means deletion.
Does it cost anything? Who pays?
Free to the parent. Our cost is message fees plus hosting — a few dollars per family per year.
What does the coordinator have to do?
Hand over a card. On it, a QR code and one sentence: “Scan this; it reminds you on every important date what to do.”
How does the parent find out it exists?
The biggest problem. Three routes: the coordinator hands over the card (he has a reason — her calls get shorter); the Family Resource Center hands it over (they are with the family the whole under-three period); our page.
Does it exist? How long?
No. Most of the message content already sits in the guide pages. To build: the sign-up page, the sending back end, the buttons, and final wording for the fifteen messages. Two to three weeks. In this order: the sign-up page first (four fields, and the page immediately lists which messages will come — clickable), then, once the wording reads right, the back end and the sending service.
How would it fail?
Nobody knows it exists (distribution); a date or statute in one message is wrong — a day off is wrong, so every message needs a second pair of eyes; she changes her phone number; the messages get treated as spam.
What we live on
Written here because it decides whether anything above goes sour
The parent never pays. Someone else has to, and whoever pays defines what “success” means.
Why not charge parents?
Not a posture; a structure. Money in this system does not pass through the parent — regional centre, plan and district pay the agency directly. She has no sum to redirect to us, and she is the poorest party in the system (two thirds of families report material hardship, mothers earn 56% less, and hardship peaks at ages three to five). Then distribution: a coordinator or Family Resource Center hands over a card because what is on it is free; charge, and the card stops moving. So the family-facing layer — guides, calendar, lookup, list, card — is free for good, with no advertising and no sale of data.
Why not take the agencies’ money? That is the fastest.
It is, and it is how existing directories live: listing fees, placement fees, referral fees. Two reasons not to. Law: Medi-Cal and regional-centre money is public money, and a referral fee from an agency runs into federal anti-kickback rules. Trust: the moment an agency pays, “we don’t tell you which one to choose” is no longer believable, the list can no longer say “this one said no,” the coordinator stops handing over the card, and the free layer has lost its point. That trade is the moat for cash flow. We don’t make it.
Then where does the money come from?
From the parties that help the parent, never the party the parent is rating. One, employers. Four in ten California employer plans are self-funded — the company itself pays for its employees’ children’s therapy, and a child who waits a year saves the company nothing; an employee with an autistic child is seven times as likely to cut hours or leave. “Caregiver benefits” are already something companies buy, but today’s vendors teach the parent how to raise the child, not how to make California’s system deliver what it promised — that half is empty. The company pays, the employee-parent uses it free, and the measure is how soon the employee’s child was seen: the same thing the parent wants. Two, regional-centre vendor fees. Centres pay by the hour for “family training”; become a vendor for it, and “teaching the parent to work the system” is a service the centre pays for and the family gets free, from the pocket that was meant for that family anyway. Three, paying for a person. California IEP advocates charge $200 to $250 an hour to sit in meetings and write appeals; almost none work in Chinese or Spanish. What is paid for is a person, not information; those who can pay do, and the first two lines cover those who cannot. Four, grants. DDS funds “service access and equity” work by community organisations every year under §4519.5; Chinese-speaking families are under 1% of the DDS caseload — under-identification, not lower incidence — exactly what that money is for. Five, data, in the long run. The Auditor asked DDS three and a half years ago for a measure of whether services actually happen; there still is none. The monthly question and the real list, aggregated, are that measure. Buyers: DDS, legislators, regional centres before their equity meetings, researchers. Aggregates only, never a family.
What about health plans? Aren’t they the only party with a number?
Yes — which is why to be careful. Each year a plan files a report card: what share of members could get an appointment within ten business days; below 70% it is penalised (Kaiser paid $200 million). That number comes from asking agencies, not from asking parents whether the child actually started. So it can rise while the child keeps waiting — drop non-accepting agencies from the list, have agencies book a “chat” within ten days and the therapy three months later, and the report passes. A plan that comes to buy is likely buying “get my number up.” We design nothing for it. With a year of real data, it will come on its own; the contract must then be measured on how many days a child waited from request to first session, not on the compliance rate. The first cannot be faked.
How much is that?
Plainly: if all of it works, the first year is somewhere between $100,000 and $250,000 — enough for two or three people, a small organisation that lives, not a funded company. The road to bigger runs through employers and data, and takes two or three years. Slow, but it keeps paying, and every dollar comes from “this family got served sooner.”
Where do we start?
One county, one language, one age band, one person. The first thing is not a website but a talk — “three things that happen the day your child turns three,” ninety minutes, free, in a church hall, a parents’ group, a paediatric clinic’s meeting room. Before the talk, call that county’s two or three hundred agencies; at the talk, say “this is who was taking children last month, and who is booked to March.” Hand out three things at the end: the card, the calendar sign-up, and one sentence — “if you want someone beside you in the meeting, here is what it costs.” Ninety days, three numbers: thirty families on the calendar, five paying for a person, ten conversations done. Whichever number falls short says which step was wrong. Then widen in two directions: the coordinators at that regional centre (bring the list, sell nothing) and the paying families’ HR departments (the door to the first employer). Not two counties at once, not two languages at once, not an app first, and no institution before thirty families.
Four things we will not do
Charge parents for information; carry advertising; take referral or ranking fees from agencies; sign a contract measured on a plan’s compliance rate.
Step two · An app that walks these years with the parent
After the website · the five things above in one shell, plus the one thing a website cannot do
It accompanies the parent. It tracks the system, not the child.
What is it?
An app on the parent’s phone that stays with her from the day something first feels off through three, four, the appeals, IHSS — a reminder when each stop arrives, a record when each thing is done. It is not a new thing: the five things above are its skeleton, put in one shell, plus one thing only an app can do (the folder).
Who does it accompany? The child?
The parent. This has to be settled first, because the two roads are completely different. An app for the parent records what the system did for her child: who promised what, what should happen on which day, whether it did. An app that tracks the child records behaviour, sleep, meltdowns, progress — which the provider and the ABA team already do, should do, and own the data of. And autistic adults are acutely sensitive to being tracked; something that looks like surveillance of a child will repel some parents and nearly all autistic adults. So what the app tracks is the system: dates, promises, hours, calls, papers. A product for autistic people themselves is a different product, with them as its readers, and it starts by asking them what they want.
What does it look like when it opens?
Four panes. One · What to do now: the first screen is always one sentence — from the child’s age and the buttons she has pressed, the single thing that matters today, who to call, what to say. Two · Dates: the calendar — the dozen-odd messages by age and by button, plus her own appointments (the IEP meeting, an evaluation, a coordinator call-back). Three · Record: every call and meeting — date, who, what they said, what happens next; and once a month, “of the 40 hours in the plan, how many happened?” Four · Papers: birth certificate, insurance card, diagnosis, IEP, denial letters.
Which of the four can the website already do?
One and two are the calendar page. Three, half: the table at the bottom of Four Questions. Four is the one real reason for an app: the papers stay on the parent’s own phone and not one of them passes through us. A web page cannot do that — to keep a photo it would have to upload it to our server.
Why can’t the papers be uploaded to us?
Because they are a child’s medical information. California’s medical privacy law (Civil Code §56.06) says in so many words that any business offering consumers software or a mobile app “designed to maintain medical information” is held to a medical provider’s standard. The moment a diagnosis report sits on our server, we are that business. That is a responsibility in a different class from storing a birthday. Keep the papers on the phone and the section is never reached.
What has to be in place before collecting a parent’s information?
First, know which tier you are collecting. Tier one: the calendar’s four fields (birthday, county, who pays, a phone number) — personal, not medical, the lightest requirements. Tier two: the call log and the papers — a child’s medical information, governed by the law above. Tier three: the monthly number — one family’s figure alone, but in aggregate it can name an agency that chronically under-delivers; the hard part is not law but consent terms and who we are. To prepare: a privacy policy (what is collected, why, for how long, who sees it, how to delete — the App Store, Google Play and California’s CalOPPA all require one); terms of service; a consent screen with nothing pre-ticked and one separate line saying “what you enter is about your child”; consent for text messages (the federal TCPA: explicit consent before sending, and STOP works on every message). Apple requires that an account can be deleted inside the app, and that deletion is real. Technically: collect nothing you can do without; encrypt in transit and at rest; a user’s row readable only by that user; deletion that reaches the backups. And one organisational matter: the first line of a privacy policy says who we are — what legal entity Power Plus Partner is has to be settled before a child’s information is collected. Before launch, an hour with a lawyer who knows California privacy law is worth it. This page is information, not legal advice.
Is “maximum reminding” the same as more reminders?
No. A parent’s phone is already full of notifications; one more means one fewer read. The calendar is a dozen messages rather than a hundred and fifty because each one sits on a legal date with a consequence. Add “how was today?” every evening and the app is muted within a week. Few and exact is what accompanying looks like.
Why not build the app now?
Because now it would be a guess. Build the web calendar first, let real parents use it for two or three months, fix the wording, learn which messages matter and where parents get stuck — then wrap it in an app shell and add the on-phone folder. When the first app version ships, what is inside it has already been used. Order: web calendar, two to three weeks; the shell and the folder, four to six more; the monthly question last, terms first.
How would it fail?
It turns into something that watches the child (parents and autistic adults alike will reject it); too many reminders and it gets muted; papers get uploaded and we become a keeper of medical records; nobody knows it exists — the same distribution problem as the calendar.