Lisa Lightner

I got this question on the Facebook page and wanted to move it here because my response got rather lengthy. And, this way we have it as a resource. A teacher wrote: I have a question for you. The Louisiana Legislature passed a law last August that there must be a 15 business day waiting period for an IEP to take effect from the date the PWN is signed. We tell parents they can initial the PWN to waive that waiting period so services may begin the day of the IEP. AS a generic inclusion teacher, most of my IEPs are straightforward and I have no problem with informing parents they can waive this waiting period. However, I have had SSCD and autistic classes where students need more support and this makes me uncomfortable to see the push to waive the waiting period become "best practice" among all special education teachers. Am I overreacting? I can think of a student who against his civil rights was put in a an SSCD self contained class from all general education classes due to behaviors. That is one incident where I would advise the family to seek help from the PTI and not waive the waiting period. When he was transferred to my class and I held an amendment meeting, every suggestion I made to support the student in gen ed was shot down by the principal.

You are absolutely right to follow that gut feeling—there is more you can do. 1. Push for an IEP Instead of a 504 Right now, your son has a 504 Plan, which only provides accommodations. But based on what you’re describing—falling behind academically, difficulty with transitions, sensory regulation challenges—he may actually qualify for an IEP under "Other Health Impairment" (OHI) or even Autism (if he shares characteristics). Next Step: Request a Full and Individual Initial Evaluation (FIIE) in writing for special education services. Schools must evaluate once you put it in writing. If they refuse, ask for a Prior Written Notice (PWN) explaining why. 2. Use the 504 Plan to Strengthen His Case If they deny the IEP (or while you wait for the evaluation), strengthen his 504 Plan to address his specific needs: ✔ Transition Support: A written transition plan to help him adjust to the new school (e.g., scheduled visits, meeting teachers ahead of time, social stories about the new environment). ✔ Sensory Accommodations: A sensory plan that allows him to wear specific clothing, access cool-down spaces, and take sensory breaks. ✔ Test Anxiety Support: Structured test prep in small groups, breaks during testing, and alternative testing environments if needed. ✔ Academic Interventions: If he’s already behind, push for structured academic support (extra reading/math help, executive functioning coaching, etc.). Many parents don’t realize that 504 Plans can be extremely detailed—schools just tend to do the bare minimum unless parents push. 3. Fight the School Transfer Decision School choice may be “random” in theory, but disability-related requests are different. You can argue that moving him violates Section 504 because it creates a significant barrier to his access to education due to his disabilities. Next Steps: Request a 504 Meeting (in writing) to amend his plan and add “continuity of placement” as a necessary accommodation. Ask for an IEP/504 Transfer Appeal: If your district has an appeals process, file one with documentation stating that the school change will cause “educational harm” due to his disabilities. Use Medical Documentation: If his doctor, therapist, or any provider agrees that changing schools will negatively impact him, get it in writing. A letter from a professional can carry weight in keeping his placement. 4. Alternative Options if They Say No If they still refuse to keep him at his current school: Consider a Homebound/Hybrid Option: Some districts allow students to attend their home school part-time for core classes and do others online or at home. Advocate for Extra Support at the New School: If you must move schools, make sure they create a detailed transition plan before next year. 5. Bottom Line Ask for an IEP evaluation (this gives you more legal protections). Strengthen his 504 Plan to include accommodations for the school transition. Fight the school reassignment under Section 504 (continuity of placement). Use medical/therapist letters to support his case. You do have options here, and you’re absolutely right to push for what’s best for him. For as bad as your situation might feel now, most school situations are worse, in my experience. https://adayinourshoes.com/vouchers-school-choice-bad/ More to read: https://adayinourshoes.com/difference-504-iep/ https://adayinourshoes.com/extended-time-on-tests/ https://adayinourshoes.com/iep-prior-written-notice-pwn/

This is absolutely the right place to ask this question. You’re not alone in this, and you’re right to push for better options for your daughter. 1. IEP Eligibility & Chronic Illness Yes, your daughter can qualify for an IEP under “Other Health Impairment” (OHI), which includes chronic conditions that limit strength, vitality, or alertness—including pain conditions like Fibromyalgia. The school saying she “won’t qualify” before even evaluating her is not how the process is supposed to work. If they’ve already made up their minds, that’s called predetermination, and it’s a violation of IDEA. If you haven’t already, submit a written request for a Full and Individual Initial Evaluation. They are legally required to evaluate her once you request it in writing, or if they refuse, ask for a Prior Written Notice (PWN) explaining why. 2. Research & Precedents Schools often push back when a student is “smart” or earning “reasonably good grades.” But the law isn’t about grades—it’s about access to education. Chronic pain, fatigue, brain fog, and anxiety absolutely impact her ability to access learning, even if she’s pulling decent grades. Some key points: Case Law & Precedents: Courts have ruled that students don’t need to be failing to qualify for an IEP. IDEA protects students whose disabilities affect their ability to access and benefit from education, which includes attendance, participation, and engagement—not just grades. Chronic Illness & IDEA: The US Department of Education has guidance stating that chronic illnesses can qualify for IEPs under OHI if they impact a student’s ability to attend school consistently or require modifications. 3. If an IEP is Denied If they refuse an IEP after the evaluation, you have options: Dispute it (request an Independent Educational Evaluation, file a state complaint, or request mediation). Fight for stronger 504 Accommodations: If an IEP isn’t an option, make sure her 504 actually works for her. Things like: Hybrid schedule (some in-person, some virtual) Access to AP/honors courses online or in-person Live instruction and teacher response time guarantees A modified school day PE exemption Additional time for assignments due to pain flare-ups A 504 is only as good as what’s in it. Schools may do the bare minimum unless parents push. 4. Better Online Learning Options Since the current online program isn’t cutting it, you could look into: Dual Enrollment: If she qualifies, some states allow high school students to take community college courses for credit. Homebound Instruction: Some districts offer teacher-supported home instruction for students with medical conditions. This should be be viewed as a temporary, last resort. State-Sponsored Virtual Schools: Some states offer virtual learning options than what districts provide. Be careful and research thoroughly--their success rates aren't fantastic. 5. Social Connection & Mental Health She’s miserable and lonely—that is a huge issue. Even if the school drags its feet on academic supports, push for ways to help her stay engaged socially: Can she participate in clubs, activities, or sports (even part-time)? Would the school allow her to attend part of the day in-person for certain classes? Could she access counseling through her 504 for mental health support? Your instincts are right—this situation isn’t sustainable for two more years.

It appears that this is one of the guidance letters that got moved recently (new Secretary of Education). Let me see if I can find it, I'll look later.

Schools love to throw out misinformation (“We don’t do that here,” “We can’t provide that,” “Only medical doctors can diagnose that,” etc.). What’s the worst or most frustrating myth you’ve heard about IEPs or 504s? How did you handle it?

No, IDEA does not define this. Presumably, it's being done before your upcoming IEP renewal--so the assumption is made that it will be completed before that meeting. Some states define this, but IDEA only defines initial evaluations.

Wow, that is a lot to untangle, and I can only imagine how exhausting and frustrating this must be for you. You’re absolutely right to be pushing for your children’s rights, and it sounds like you are dealing with multiple layers of roadblocks—FERPA violations, IEP records access, charter school compliance issues, and potential procedural violations under IDEA. Let's break this down into steps you can take. Access to IEP Records and Parental Rights Notices (FERPA, IDEA, Section 504, PPRA) FERPA (Family Educational Rights and Privacy Act): Schools (including charter schools) must provide parents access to their child’s educational records within 45 days of the request. Denying or delaying access is a federal violation. IDEA Procedural Safeguards: You are entitled to receive a yearly copy of your procedural safeguards, which explain your rights under IDEA. Schools are required to provide this, especially if you request it. What You Can Do Now: Submit a formal written request (if you haven’t already) stating that you are requesting your child’s full educational records under FERPA and IDEA. Mention that failure to comply could result in a state complaint to the PA Department of Education (PDE) and/or a federal complaint to the U.S. Department of Education. Keep all communication in writing—no phone calls! FERPA gives schools up to 45 days to provide access to educational records after a request. Here’s the exact wording from the U.S. Department of Education: "A school must comply with a request for access to records within 45 days of receiving it." However, IDEA (for IEP-related records) has a shorter timeframe—schools must provide access to special education records "without unnecessary delay" and before any IEP meeting or due process hearing. This means they shouldn’t make you wait the full 45 days if it affects your ability to participate in an IEP process. So, if they’re dragging their feet on IEP records, IDEA gives you extra leverage to push for a faster response. Charter School Law (PA Code 22) and the Role of IU (Intermediate Units) Your Understanding is Correct: In Pennsylvania, under 22 Pa. Code Chapter 711, the special education administrator (Supervisor of Special Education, LEA, etc.) must be a direct employee of the charter school’s Board of Trustees—not an IU or outside contractor. If They Are Violating This: You can file a complaint with PDE’s Bureau of Special Education Compliance Office. You can also escalate this to the Pennsylvania Charter School Appeal Board if they are mismanaging compliance. Charter schools, in particular cyber charters, are under a tremendous amount of scrutiny right now as far as how much money they get and how they spend it. Our own Auditor General, a republican, found a tremendous amount of waste. Can a Charter School Deny Records Based on Internal Policy? Nope! A school cannot create its own policy to override state and federal law. If the board has a written policy saying they can "pick and choose" who gets records, that is illegal. You can: Demand a written response from the school citing the exact law they are using to justify denial. File a FERPA complaint with the U.S. Department of Education if they continue to refuse. (Yes, OCR was basically demolished 2 days ago but we must not accept this, imo. File complaints. They've brought back a lot of other employees that they fired) Requesting a GED for Your Children Yes, PDE (Pennsylvania Department of Education) has a GED option. Since your children are still school-age, you may need an approved withdrawal from school or a special exception. The process can be started through the PA GED Testing Program website. But before making a final decision, I’d encourage you to explore other options—like homebound instruction, a different school placement, or additional supports through IDEA or Section 504. First off, your feelings are valid. This is overwhelming, and no parent should have to fight this hard for their child's basic rights. Your children’s mental health is a priority—if they are suffering, push for better accommodations, mental health supports, and advocacy help. Immediate Action Steps Submit a formal records request (again, in writing). Demand a response within 10 days and cite FERPA & IDEA. File a complaint with PDE (for special ed violations) and the U.S. DOE (for FERPA violations) if they do not comply (I realize that this is different now, but we must not accept it, we need to demonstrate the value of OCR). Request an independent review of the charter school’s compliance with PA Charter School Law. Look into GED options through PDE, but consider other schooling alternatives first. Seek outside advocacy support, such as Disability Rights PA or an educational attorney You are not alone in this fight—there are ways to force compliance and protect your kids.

Yes, if the district paid for it.

This is definitely a tricky situation. On one hand, you want your daughter to continue participating in these activities she enjoys. On the other, the organization seems to be placing an unfair burden on your family by requiring a parent chaperone as a condition of participation. Can They Do This? Since this program is run by a nonprofit and not the school district, they may have more flexibility in setting their own participation requirements. However, if the program is operating within the school and during school hours, there could be an argument that they should be following Section 504’s nondiscrimination requirements—meaning they can’t exclude your child simply because she needs accommodations. Next Steps Clarify the Requirement in Writing Ask the Director of Programming for clarification: Is this a blanket policy for all students with anxiety/panic disorders, or is this specific to your child? Is there any alternative support available if a parent cannot attend? What is the legal basis for excluding a child due to their disability-related needs? Loop in the School (If Needed) Since this happens during the school day, you might consider discussing this with the school’s 504 coordinator or administrator. Even though it’s a nonprofit, if the school is actively hosting or endorsing the program, there might be some responsibility to ensure accessibility. Document Everything You’re already on top of this, but keep records of: Your daughter’s experiences (meltdowns, triggers, what helped/didn’t help) Communications with the organization and school Any patterns of exclusion Consider an Accommodation Request If the nonprofit won’t budge, you might propose a different accommodation—such as additional staff support—so that your daughter can still participate even if you can’t attend. Ultimately, this might come down to how much oversight the school has over the program and whether it’s considered an extension of the school’s offerings. If it is, they may need to ensure accessibility under Section 504.

putting your daughter in a position to defend her own accommodations? Absolutely unacceptable. I totally get wanting to educate this teacher instead of just blasting them with anger (which, let’s be honest, at times they kinda deserve). Here are a few short but impactful resources you can send: 1. The Classic: “F.A.T. City” Workshop (Frustration, Anxiety, Tension) Video Richard Lavoie’s “How Hard Can This Be?” This is an eye-opening workshop where a specialist makes neurotypical teachers feel what it’s like to have a learning disability. Every teacher should be required to watch this. 2. Harvard Article: Why Neurodivergent Kids Work 2x as Hard Article The Twice-Exceptional Dilemma This explains how 2e students work harder than neurotypical peers and why accommodations are essential—not a “crutch.” 3. One-Liner Response for the Future For your daughter: "My IEP is set up so I can access learning, not just so I can get good grades." For the teacher: "Accommodations don’t make learning easier—they make it possible." Would love to hear how this goes. Hopefully, the teacher has enough self-awareness to take the hint.

First, yes, this is a problem—on multiple levels. A) Shouldn’t they have re-done all the tests from three years ago? Not necessarily every single test, but they must do a comprehensive evaluation. That means: They can’t just rely on teacher observations and a psych report. They must assess all areas of suspected disability (not just the ones they feel like looking at). If they decided not to re-administer certain tests, they should have provided you with a prior written notice (PWN) explaining why. If they skipped key assessments (like cognitive testing, academic achievement, speech/language, OT, etc.), you have the right to request additional testing. B) Shouldn’t there be an official CSE meeting? YES. A formal Committee on Special Education (CSE) meeting is required to review the results—and no, this does not take the place of the annual IEP review. They owe you a separate meeting for this. A phone call? Absolutely not. That’s not how this works. Action Steps for You: Send an email (in writing, always) requesting a formal CSE meeting ASAP to review the evaluation. Ask for copies of all assessment results in advance so you can review them before the meeting. If they skipped certain tests, request a clarification on why they weren’t done (and push for them if needed). If they drag their feet, remind them that NY regulations require a full and individualized evaluation under IDEA. Let us know how it goes!

If a school is going to deny your IEE request, they are required per IDEA to file for Due Process to defend their evaluations. If this is just to discuss your IEE request, it's kind of a gray area as far as who is required to attend, if you didn't ask for an IEP meeting--and no changes to the IEP are expected. They can just file for Due Process and send you the PWN announcing as much. Sounds like they're going to give you a chance to back out before that happens.

I don’t blame you for being fed up. Two hours of intervention daily and no progress? That’s a huge red flag. If he’s in the 2nd percentile and declining, what they’re doing isn’t working. And under IDEA, they’re legally required to provide an appropriate education—which means effective interventions that actually help him make progress. When Should Curriculum Be Modified? If a student is not making meaningful progress despite consistent, research-based interventions, it’s time to re-evaluate the approach. You don’t just keep doing the same thing harder. (Yet somehow, schools love this method ). If a child is this far behind, curriculum modifications (not just accommodations) may be necessary. Put all of this in writing. Something like: "We are now in March, and my child has shown no progress despite two hours of intervention daily. His benchmark scores place him in the 2nd percentile. This indicates that the current interventions are not effective. I am formally requesting an IEP meeting to discuss modifying his curriculum and intervention plan, as well as the possibility of additional assessments to determine why he is not making progress." Also, start tracking EVERYTHING—progress reports, test scores, work samples. You may need this data to push for compensatory education later if they’ve been wasting your son’s time. Keep us posted! And don’t be afraid to escalate—this is way past the “wait and see” phase.

Lexercise is an online, structured literacy program based on the Orton-Gillingham approach, which is great for kids with dyslexia and other reading challenges. It’s research-based, multi-sensory, and follows a systematic way of teaching reading, spelling, and writing. Some parents love it because: It’s evidence-based and follows structured literacy principles. There’s one-on-one instruction with a trained therapist. The online platform has games and activities for reinforcement. It includes progress monitoring, so you can see if it’s working. Some drawbacks: It’s not cheap, and insurance/schools typically don’t cover it. Consistency is key—kids need to do it regularly for it to be effective. If your child needs in-person support, online may not be ideal. If you’re considering it, I’d check if your child qualifies for school-based Orton-Gillingham instruction first (because, hello, free). But if the school is dragging its feet, Lexercise can be a solid alternative.

Oh, you’re definitely going to face pushback. Schools don’t typically jump at the chance to provide more services unless you make a strong case for why they’re necessary. But you’re already on the right track because you have data—private evaluations, research, and your child’s lack of significant progress. Here’s how I’d approach it: 1. Frame It as a Data-Driven Discussion They may say he’s making progress, but if it’s not enough to close the gap, that’s a problem. Use their own data (progress reports, IEP goals, assessments) to show that he’s moving too slowly. If the school doesn’t have solid data, push for a new assessment to measure his progress objectively. 2. Emphasize IDEA’s Requirement for FAPE Under IDEA, your son is entitled to a Free Appropriate Public Education (FAPE). “Appropriate” means effective, not just some progress over time. If push-in isn’t working well enough, he needs a different approach—like pull-out reading support. 3. Leverage Research on Early Intervention That stat you found? Gold. Schools love data, so use it. Emphasize that early, intensive intervention is more effective and cost-efficient than waiting until later grades. If they resist more speech therapy, remind them that speech and reading skills are directly connected—a delay in one impacts the other. 4. Anticipate the Common Pushback & Have Responses Ready “He’s making progress with what we have in place.” “Yes, but it’s not enough to close the gap. What’s the plan if he continues at this rate?” “We don’t do pull-out for reading at this level.” “I understand that may not be the standard model, but IDEA requires services to be individualized. His needs justify a different approach.” “We don’t have staffing for more speech services.” “Then we need to discuss compensatory services or alternative ways to meet his needs.” 5. Make a Clear, Written Request If you haven’t already, submit a written request before the meeting outlining what you’re asking for and why. That way, they can’t claim surprise or say, “We need time to consider this.” Would love to hear how it goes—keep us posted! And if they really dig in their heels, we might need to talk about next steps.

That’s super frustrating—but unfortunately, not surprising. Section 504 accommodations must be individualized, just like an IEP. A 504 Plan is designed to provide equal access to education for students with disabilities by offering accommodations that meet their specific needs. However, unlike an IEP, which includes specialized instruction and goals, a 504 Plan typically focuses on removing barriers to learning within the general education setting. Each 504 Plan should be based on the individual needs of the student, determined through an evaluation process, and should outline specific accommodations to ensure they receive a free appropriate public education (FAPE). While there is no standardized format for a 504 Plan, it should be tailored to the child’s unique needs rather than using a one-size-fits-all approach. A 504 Plan should be individualized, just like an IEP. But what often happens (and it sounds like this is the case at your school) is that schools create blanket, cookie-cutter accommodations instead of actually tailoring the plan to the student’s unique needs. They slap the same five generic accommodations on every 504 Plan (like "preferential seating" or "extra time on tests"), whether or not they’re actually useful for that child. This is a failure of the 504 team. They should be evaluating each student individually and determining what accommodations they actually need to access their education. Teachers shouldn’t be stuck implementing meaningless accommodations that don’t serve the student (or worse, accommodations that aren’t even appropriate for the student). If you’re in a position to push back, you can: Ask for clarification—How does this accommodation help this specific student? Request more detailed documentation in the 504 Plan—what does "preferential seating" mean for this student? Front of the room? Away from distractions? Near the teacher? Encourage the team to actually discuss accommodations instead of just copying and pasting from a template. Sadly, many schools treat 504s as a box to check rather than a real support system. If you’re seeing this happen, you’re not wrong to be frustrated. Do you want any resources or talking points to bring this up with your admin?

So reasonable....is subjective, of course. You knew that. I think this request is reasonable. Obvs this school does not. Their argument, however, is invalid. "All students" doesn't apply here, because we're not talking about all students. We're talking about one with a life altering disability. That's the strategy and argument I would use. "All students" don't need a trusted adult there so that they can function normally. This one does.

So, there's a lot going on here. And I'm headed out the door to take Thing 2 to basketball practice. 1. even tho it might feel scary--I'd fire this advocate. What are you paying them for, if they don't want to take up the difficult issues? Find another one. But this doesn't feel like money well spent to me if they won't do the hard things. 2. Restraint and seclusion regulations vary by state. So you're going to have to find them for your state, they should be in your state's education code. Also, look at your school district website for restraint and seclusion policies. 3. Restraint and seclusion doesn't work, plain and simple. Is the FBA and BIP solid, in that it identifies what it is that is going on with your son that causes these episodes? Most FBAs are not. Consider asking for an IEE. 4. I have mixed feelings about high functioning and low functioning labels. I do use the term low functioning to describe my own son, as it is an accurate description of him. However, when people use the term high functioning, it usually means verbal ability and not much else. Clearly your son needs instruction in emotional regulation and self advocacy--to recognize when this is happening and appropriately self advocate for a coping mechanism (sensory break, etc.). When you use the term high functioning, it sets an expectation for him, that it does not appear he can meet at this time.

Ok, first, schools do not diagnose. They determine a child eligible or ineligible for special education, under one of the 13 eligibility categories. In my 15 years of doing this, I have seen many kids incorrectly categorized as ED instead of autism, because when autistic needs are not met, the child often displays behaviors similar to ED. However, what gives me reason to pause is that your neuropsych said aspberger which is no longer in the DSM and hasn't been for over 10 years. Nevertheless the child in front of you should match the child on paper. What you're asking the school to do is to change eligibility category based on the neuropsych eval instead of the school's eval. Be careful, because if the neuropsych report also says anxiety, that certainly qualifies for ED. If this is what you want, you need to make a formal request to make this change, and you'll receive their decision on a NOREP. And no, another set of evals is not necessary (by law) to do this. Ask them to show you where it says that, if that is their sticking point. A school can choose to use an outside eval if they want.

Probably not the answer you want to hear, but I don't think your grandson needs a 1:1. What he needs is someone to evaluate, dig deep, and figure out the reason that he's eloping. Is it task avoidance? Is it a sensory break? What is going on, that he just cannot bring himself to sit there for one moment longer, and elopes? A 1:1 will just pat him on the arm or verbally prompt him to not elope. That's a bandaid fix at best. If you don't get at the root cause, and either offer accommodations, look at environmental changes, or teach him coping mechanisms that are more appropriate (and safer) than eloping, the behavior will never stop.

No, that sounds like retaliation. I'd seek an attorney. I know many parents say "I can't afford one" but when we're talking about choking, DCF and all that, you can't afford to not at least visit one for an initial consult.

you did it!

Well, here we are. Not the outcome that many of us wanted, but here we are. So let's get together, share, comfort each other....because we are not alone.

Also, FSIQs are a vanity metric. What did the subtests show?

How do PT, OT, SLP....know what to work on? What are the goals? Are there goals? And if there are goals....sounds like an IEP to me. I suppose there's nothing in IDEA preventing a student from having a 504 with FOUR related services....but it's odd. Why not just give an IEP when it's obvious the child needs it? To prevent having to progress monitor, maybe? Who knows why they do what they do. Read up on IEEs if you haven't already. You may want to consider asking for one if you disagree with their evaluations. Ditto to what Carolyn said about keeping track of the school refusal stuff. Remember tomorrow you don't have to agree to anything, you can just listen and process the information over the weekend. (and post it here, of course)