Lisa Lightner

Whether it’s “Always get it in writing” or “Know your procedural safeguards,” we all pick up little gems of wisdom along the way. What’s one advocacy tip that has helped you the most?

Whew—this is such a powerful, clear, and unfortunately very common story for 2e (twice exceptional) kids in public school. First, you’re doing everything right—you’ve documented, provided outside data, shown samples, advocated consistently, and kept the focus on your child’s actual experience—not just the grades or scores. Here’s the heart of the issue: your son is masking his disabilities with his strengths, and the school is choosing to see only the strengths. That’s not just frustrating—it’s a systemic failure for so many 2e kids. You're right that "relative to ability" isn't part of the eligibility criteria under IDEA anymore, and that makes it harder to qualify under SLD if a student is still performing at or above grade level. But nothing in the law says schools can't consider the discrepancy between a student’s ability and their actual performance—or how hard they’re working to maintain those grades. That’s a red flag the team is ignoring. Here are some suggestions and next steps: 1. Ask for an Independent Educational Evaluation (IEE) at public expense. If the school’s reevaluation was surface-level or didn't fully assess his functional performance, especially in reading and writing under stress or timed conditions, this is your next move. You have the right to request it if you disagree with their evaluation. Read up before you do this (info on my site) because if the school declines, they're required to file for due process. 2. Ask for data on how the writing accommodations are being implemented. Teacher conferencing sounds nice, but without documentation, it's fluff. Ask: How often is it happening? What is being taught or corrected? How is progress tracked? I have a mini course on IEP progress monitoring. 3. Push for goals and services in written expression. You have the samples. You have the documentation. He’s not meeting grade-level expectations independently. Use that language. Ask for a meeting to specifically address writing fluency, spelling, and on-demand writing without supports. 4. Bring in the emotional impact. Stress, shutdown, refusal—these are all signs that he's not accessing the curriculum in a meaningful, functional way. Emotional distress is educational impact under IDEA. 5. Reframe the “good grades” argument. Say: “Good grades with heavy scaffolding are not the same as skill mastery. He is not progressing independently or sustainably. That’s not FAPE.” 6. Consider requesting an FBA. If he's overwhelmed, shutting down, or showing behavior at home tied to school stress, an FBA for emotional regulation in response to school demands might help. It also gives you a documented path toward support if burnout increases. 7. Lean into transition goals as you head toward high school. That self-advocacy skill you mentioned? That should be in the IEP. You can ask for direct instruction in self-advocacy and executive functioning as he prepares for the next stage. I know it’s exhausting—and it’s not fair that your son’s strengths are being used against him. But the fact that he wants to be in school, wants to do well, and is finally starting to speak up for himself? That’s a huge win. You’re not overreacting. You’re seeing the iceberg the school is trying to ignore—and trying to steer your son safely past it. I have sample language for these requests, letter templates, in the IEP toolkit which is being revised right now. You're doing an incredible job.

Ugh, what a mess—and I’m so sorry you’re dealing with this. The short answer? No, they should not be threatening to move your son back to his old school because of absences related to his disability. Here’s why: This is a disability-related attendance issue Your son has ADHD and severe anxiety, both of which are documented disabilities. The absences are excused and tied to medical and therapeutic needs, which means this isn’t just a truancy issue—it’s a disability access issue. Placement decisions must be based on the IEP—not attendance numbers IDEA requires that placement decisions (which include which school he attends) be made by the IEP team and based on the least restrictive environment for that student—not on whether a principal or teacher is frustrated with absences. They cannot unilaterally change his placement because it’s more convenient or “easier for them.” This could be disability discrimination under Section 504 If the school is penalizing your child because of disability-related absences, that can be seen as discrimination. Especially if the absences are backed by doctor’s notes and tied to therapy or health care. You need to put this in writing—now Send a formal letter/email to the school (cc the principal, IEP case manager, and district special ed director) stating: The absences are due to documented disabilities and supported by medical notes You are requesting that the IEP be reviewed and amended to include accommodations for medical-related absences You want written confirmation that they are not moving him without an IEP team meeting and without your consent And make it crystal clear: if they attempt to move him based on absences, you’ll consider it a procedural violation and possible 504/ADA discrimination. Also—document the teacher’s complaints if you haven’t already. That kind of pressure can sometimes lead to retaliation, and it’s better to have a paper trail. You’re doing exactly what you should: standing up and asking questions. Now it’s time to put it in writing and hold the district accountable. You’ve got this.

Schools love to say, “That never happened,” or “We didn’t say that,” or “We’ve never done that before.” What’s the worst case of gaslighting you’ve experienced? How did you document and push back?

It really just depends if it's going to open the door for you to get more services for the child, and if you want the services. Here in PA, it's advantageous to do so, but every place and every family is different. I've written about this quite a bit, to explain the differences. https://adayinourshoes.com/autism-whats-the-difference-between-medical-and-educational-diagnoses/

Short answer, yes, absolutely. There is nothing in Section 504 or IDEA that prohibits a school from doing this. https://adayinourshoes.com/can-a-504-plan-excuse-a-childs-absences/ Yes—1000% yes—an IEP can and should include accommodations for a chronic medical condition. What your team told you? That they “can only note it in Parent Concerns” and not include it as an accommodation? That’s straight-up and completely wrong under IDEA. Students with chronic health conditions—like your son's antibody deficiency—can qualify for special education services under the “Other Health Impairment (OHI)” category in IDEA. The key? The condition must impact the student’s strength, vitality, or alertness, and limit their ability to access their education—which, with 20% absences, is clearly happening. Accommodations and modifications in the IEP can address: Attendance and makeup work Flexible deadlines Modified instructional delivery Adjusted course expectations if needed Grading policies that reflect medical challenges, not just missed days Credit recovery options or waivers And Yes—Absences Can Be Excused in an IEP Schools do not get to just say, “We don’t excuse absences for chronic illness.” That’s illegal if it results in denying your child a Free and Appropriate Public Education (FAPE). The IEP team can and should put in writing: “Absences due to chronic illness or flare-ups will be excused with parent or medical documentation.” “Student will be allowed to make up missed work without penalty.” “Instructional support will be provided during prolonged absences, including access to class notes, recorded lessons, or homebound services if necessary.” What They Told You = Saying “we’ll just note it in Parent Concerns” is not a valid accommodation plan. That’s just… documentation theater. It does nothing to support your child when he’s missing class, falling behind, and potentially being told he won’t pass junior year. What You Can Say at the Next Meeting “I am requesting that the IEP include specific accommodations related to [Child’s Name]’s chronic medical condition, including excused absences with documentation and academic support during and after absences. Simply documenting this in ‘Parent Concerns’ does not constitute a meaningful accommodation and does not ensure FAPE.” You can also cite guidance from the U.S. Department of Education, which has been very clear: chronic illness is a valid basis for IEP eligibility and accommodations. (Ask them if they’d like you to send a link.) Admittedly, the Guidance Letters and Dear Colleague letters feel like thin ice right now. However, we have not been instructed as a nation, that ANYTHING has changed as far as Section 504 or IDEA. YES, the IEP can and should include accommodations for chronic illness. And the school saying it can’t? Not just wrong, but possibly violating IDEA. Keep pushing. You’re right. They're not. If you want specifics on details of how to gather data, document, ask the team and respond, check out my online training. Link in signature.

Are School Staff Allowed to Talk to the IEE Assessor Without the Parent? Short answer: Technically, yes. But only within reason. If you signed a general consent for the IEE, that often includes permission for the assessor to observe your child and communicate with school staff to complete the evaluation. That’s standard. However... What’s NOT okay? Using those communications to have off-the-record conversations about services, placement, eligibility, or future decisions before you—the parent—are brought in The district stalling or making decisions behind closed doors based on those communications Contacting the IEE assessor after the report is completed to try to spin or reshape interpretation before the IEP team discusses it So while a quick follow-up like, “Hey, what did you observe again?” might be within bounds if it’s part of the evaluator’s clarification, it starts getting shady if it’s being used to delay your FBA IEE or influence decisions before the meeting. What You’re Describing? Pattern of Delay and Noncompliance You requested an IEE. They dragged it out for over a year. They denied your initial choices (common stall tactic). Now, they’re reaching out to the assessor privately after the IEE is done. And they’re using those conversations to decide if they’ll even allow another IEE (FBA). That’s not collaboration. That’s obstruction. Here’s What You Can Say (In Writing): “I was recently informed that the district contacted the IEE assessor to discuss his observation outside of a scheduled IEP meeting. I did not give specific permission for post-report discussions outside the IEP process. I would like any further communication with the IEE evaluator to include me, as I am a required member of the IEP team. Additionally, I would like a written response regarding my request for an IEE in the area of FBA. Please consider this a formal follow-up request.” And you’re allowed to add some spice: “Given the timeline of delays and the district's previous refusal to accept qualified assessors I proposed, I am increasingly concerned about the lack of transparency and good faith.” Don’t Forget: Under IDEA, when you request an IEE, the school must respond without unnecessary delay—by either agreeing to the IEE or filing for due process to prove theirs was sufficient. Sitting in silence while they “talk to the assessor” is not a legal response.

You’re right to pause and question this, especially since you've already requested special education testing—and that’s the bigger issue here. First Things First: Your Evaluation Request You mentioned you've asked for her to be evaluated for special education. If you made that request in writing, the school is legally obligated to move forward—regardless of any accommodations they’re trying to tack on in the meantime. Accommodations (like oral testing) don’t take the place of a full evaluation. So let’s start with this: Confirm that your evaluation request was submitted in writing. If not—do it now. Email it to the principal and/or special education coordinator, and keep a copy. The “Oral Testing for ADHD” Suggestion Let’s be real: the fact that they say “most of their ADHD students are orally tested” is a red flag. That’s cookie-cutter accommodation thinking, not individualized support. And it contradicts what they also said: she has no reading issues. So… why oral testing? Here’s how to think about it: Pros of Oral Testing Can reduce pressure if a student has test anxiety or struggles with reading comprehension Might help if a student processes information better when heard rather than read Cons of Oral Testing in Your Case It doesn’t address the root cause: If your daughter is struggling due to attention, executive functioning, or processing challenges, oral testing just masks the issue It won’t fix disruptive behavior, academic delays, or social/emotional needs It might be used to delay or avoid giving her an IEP or more comprehensive support If your daughter is showing poor academic progress and behavior challenges, that is much bigger than just needing a test read aloud. This is exactly the situation where IDEA kicks in—and they need to evaluate to determine eligibility for an IEP. So here’s your move: Politely decline the oral testing for now, or agree only as a temporary measure while you wait for the evaluation. Say something like: “We appreciate the accommodation offer, but this doesn’t address the core concerns we have. We are requesting a full evaluation under IDEA to determine if she qualifies for specially designed instruction.”

YES—what you’re describing absolutely could warrant an IEP. You're not just being protective or overly cautious—you're seeing real, documented barriers to access, despite the school handing out “good grades” like they prove everything is fine. (Spoiler: they don’t.) “Effective Progress” ≠ “Good Grades” Schools love to lean on grades to show a student is “doing fine.” But under IDEA, “effective progress” means progress appropriate for the student, considering their unique needs—not just whether they’re pulling an A on a worksheet with 80% of it reduced or dictated to someone else. You said it yourself: "How can a 6th grader who doesn’t write their own essay or have the work reduced 80% be making effective progress?" Exactly. He’s accessing the curriculum through intense modification and scaffolding—which is fine! But that’s the definition of needing specially designed instruction (aka, an IEP). Dictation ≠ Writing Instruction Adding dictation as a 504 accommodation isn’t a fix—it’s a band-aid. Yes, it helps with access, but it doesn’t address the underlying skill deficit in written expression. Kids with dysgraphia and executive functioning issues like ADHD often need explicit, specialized instruction in: Organizing ideas Developing paragraphs Mechanics and syntax Planning, drafting, and revising That's instructional support, not just an access tool. And that’s where pull-out or push-in ELA support through an IEP comes in. When a student is writing “I am stupid” on tests, shutting down during writing tasks, and visibly distressed during classwork, that’s not just a mental health issue, it’s a symptom of a mismatch between what he’s being asked to do and what his current supports can actually address. Yes, he has access to the adjustment counselor through his 504, but that doesn’t resolve the instructional mismatch and the writing-based performance anxiety. These need to be addressed together, not siloed off. What to Bring to the Meeting Data + Documentation Bring copies of the assignments that were reduced, the math test with the “I’m stupid” note, and any communications showing how much support he’s needing just to get through assignments. Highlight Skill Deficits, Not Grades Say: “We’re not seeing independent skills. We’re seeing workarounds. That’s not the same as progress.” Use IDEA Language “My child requires specially designed instruction in written expression to make meaningful progress in the general education curriculum. Accommodations alone are no longer sufficient.” Ask for SDI Goals Even if they push for just a 504 revision, ask: “What’s the school’s plan for directly teaching writing? How will that be tracked and measured? Bottom line: this is exactly the kind of situation IDEA was written for. A child who’s smart, but struggling because they’re being patched through instead of taught in the way they need. You're absolutely right to push for an IEP, and you’ve already laid the groundwork beautifully with your eval requests.

Lack of progress, missing services, work that’s too easy or too hard… there are so many red flags. How did you know your child’s IEP needed changes? What were the signs?

You’re already walking into that meeting with a solid plan. Honestly? Great job on how you’ve framed this—especially your focus on FAPE, Child Find, and using legal precedent. You’re doing exactly what a good advocate should: connecting the dots between the emotional impact, the lack of access, and the school’s legal obligations. Here are a few ideas you might add to your strategy—some are small tweaks, some are additional leverage: 6. School-Based Counseling IS a Related Service under IDEA If the school is denying counseling with a flippant “she doesn’t need it,” ask: Where is that determination documented in the IEP or any evaluation? If it’s not in the IEP or based on an evaluation, that’s a procedural violation. Under IDEA, counseling is a related service that must be provided if it’s needed for the student to benefit from special education. Suggested language: “Given the documented emotional impact of her learning challenges and current refusal to attend school, counseling should be added to the IEP as a related service. This is consistent with 34 CFR § 300.34.” 7. Demand Data (Or Highlight the Lack of It) Has the team provided any progress monitoring or data on emotional or behavioral functioning? If not, ask: “How is the team determining that current supports are appropriate when there is no consistent data being gathered on emotional regulation, anxiety, or attendance?” Bonus: If attendance data shows a pattern, use it to demonstrate lack of access to instruction, a cornerstone of FAPE. 8. Assistive Technology (AT) Consideration If she’s refusing to attend due to anxiety, but still shows academic potential, request an AT assessment for remote access to instruction while the team works on placement. No, it's not a long-term solution—but it's a bridge that shows you're trying to keep her engaged while they get their act together. 9. Refer to OCR and State Guidance You might also drop this little reminder: The Office for Civil Rights (OCR) has repeatedly stated that anxiety and school avoidance are not “voluntary” behaviors, and districts must address the emotional health of students under both IDEA and Section 504. 10. And Finally—Document Parent Requests for Comp Ed If she’s missed substantial instructional time due to the district’s delay in addressing her emotional needs, mention that the parent reserves the right to request compensatory education. No need to demand it yet—but drop it as a breadcrumb. You're already 10 steps ahead of where most teams expect you to be. Add a little more heat to that sauce with these points, and you’ll make it very clear: this isn’t just a “kid with test anxiety”—this is a denial of FAPE, a Child Find fail, and a procedural mess waiting to become a legal problem for them.

Every kid is different, but sometimes we hear about an accommodation and think, why didn’t I ask for that?! What’s an accommodation that has made a huge difference for your child?

First off—thank you. Your message was beautiful and powerful, and honestly, I’m saving it for the next time I need to shake off one of those days (you know the kind). You’re absolutely right—our kids just have different learning styles and needs, and there is nothing wrong with that. It’s the system that needs fixing, not the kids. Now onto your question—and yes, I’ve got you. What to Do When the School Refuses Full Support (Even After You’ve Asked 500 Times) You’re not alone. I hear this a lot: “We’ve asked. We’ve brought data. We’ve even done mediation. And still—nothing changes.” Here’s the thing—schools don’t get to say “no” just because they feel like it. Under IDEA, they’re required to provide FAPE (Free Appropriate Public Education), and if the current supports aren't enough for your child to access and benefit from their education? Then they’re out of compliance. Next Steps: 1. Put Everything in Writing (Even If You Already Have) Yes, I know. You’ve already asked. But it needs to be documented—and clearly. Frame it as a request for an IEP meeting and include: A summary of the data showing lack of progress. Specific supports you are requesting. Why the current supports are insufficient. That you are concerned your child is not receiving FAPE. 2. Ask for Prior Written Notice (PWN) Every time they say “no,” they’re required to give you a PWN that says: What they refused Why they refused it What data they used to make that decision Other options they considered and rejected PWN is the paper trail they don’t want you to have. Ask for it every time. How to Use PWN 3. Use Mediation Strategically You’ve already been to mediation, and sometimes it helps. But if not, the next escalation could be: A state complaint An independent educational evaluation (IEE) Or ultimately due process (I know—ugh, but sometimes necessary) You can search for any of the above topics I highlighted here: https://adayinourshoes.com/iep-special-education/ I didn't want to overwhelm you with 50 links, but after 14 years of blogging, I have written about all of these, I think. If your child is still struggling after years of "wait and see" and “we don’t have the resources,” then no—you're not the problem. You're the solution.

And I say that because there aren't only "3 levels of support." But I will elaborate more.

And the (unfortunate) response was: So there are three levels/types/or amounts of special education support according to the IEP documents. The 1st/initial Level is Itinerant Support: Special education supports and services provided by special education personnel for 20% or less of the school day. The 2nd/next level is Supplemental Support: Special education supports and services provided by special education personnel for more than 20% of the day but less than 80% of the school day. The 3rd/final level is Full-Time Support: Special education supports and services provided by special education personnel for 80% or more of the school day.

And so I said: what do you mean by full support? (because I needed clarification)

This is another question submitted via email that I want to put here so that all can benefit. Hello, Ms. Lisa This was very moving and even inspirational for all parents who feel so beat down and defected fighting for the help their struggling students need, who have their own unique learning styles. As I always taught my children, even more so those who have an IEP. Not to allow this situation or the people you may encounter in life to affect your mental health too much, because they may not understand your unique needs. You have a specific kind of learning style, that is all. So, those who will educate you, or have necessary interactions with, what you do in life should know what learning looks like for you. I tell them you have to take pride in what you need while taking your education in your own hands as well, because knowing how you learn is important for you too. I tell them not to allow anyone to make you feel that there is something wrong with you because you are you. It is no different from treating a person who is paraplegic unkind because what they need is not the same as what another person who is not paraplegic needs. The same is said with many different situations that require specific need requirements. Well anyway I don't want to ramble on, I just wanted to say that. Most importantly share how much I appreciate, when I read emails, of you showing the effects of how standing up for the educational needs of our children strengthens one another! With that being said, I never thought to reach out to ask you a question myself. So, the question I would like to ask you is do you have articles designed with information about What to do If the school refuses to offer a student Full Support? What could be said, even if a parent has asked several times and have highlighted years of data for the team to take into consideration on why full Support is needed. Please help if you have anything in this subject that could help. As even mediations have been called hoping for some resolution.

And my reply: Nope, you are not overreacting. In fact, you’re spot on—and thank you for caring enough to ask this. You're right to be cautious. That 15-business-day waiting period was put into place for a reason: to protect parents and give them time to understand, reflect on, and dispute any proposed IEP changes—especially if those changes are significant, like moving a child from general ed to a self-contained setting. Let’s break this down: 1. Waiving the Waiting Period Is Optional The law in Louisiana (Act 696, passed in 2023) says that a parent may waive the 15-business-day delay in writing—but they don’t have to. The default is that the IEP does not go into effect until the 16th business day after the parent signs the PWN, unless they explicitly choose to waive it. ✔ So when you see a culture shift where waiving it is treated as “standard” or “best practice,” that’s… not great. It’s not illegal, but it undermines the original intent of the law—to give families breathing room. 2. Big Changes = Big Red Flags You're right that the waiting period is especially important when: The student is being moved to a more restrictive setting (like from gen ed to SSCD). There are major behavioral or placement changes being made. The parents seem unsure, confused, or overwhelmed. In those cases, encouraging a parent to waive that protection could cross the line into manipulation—or at the very least, create a situation where parents don't know they’re giving up something important. 3. It’s Not Overreacting—It’s Ethical Advocacy Teachers like you—who recognize nuance and equity—are exactly what our students need. Saying, “Hey, I know we usually do this, but in this situation, I’d encourage the family to hold off and think it over,” is not overstepping. That’s doing right by the student. And yes, in a situation like the one you described—where a student with behavior needs was placed in a self-contained setting without parent pushback or a true attempt at supports in gen ed—that’s a clear scenario where you’d absolutely want to preserve that waiting period. If you're getting pressure from admin or colleagues, you might consider: Referring families to Louisiana’s PTI (Families Helping Families); while they still exist anyway; or you can refer them here Offering neutral language like: “You do have the option to waive the waiting period, but it’s completely your choice, and it’s there to give you time to ask questions or get clarification.” Keeping documentation of cases where you believe the waiver might not be in the best interest of the student. Bottom line: You’re not overreacting—you’re being exactly the thoughtful, equity-focused educator your students need. Keep doing what you're doing.

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.