Derek Schmitz's Blog, page 4

How I Knew I Had Arthritis, Not “Just Cerebral Palsy”

So, I just threw together a pretty detailed thread answering a few questions posed by someone early on the autoimmunity journey and I wanted to share those here, as well as my response to them!

Questions:

What do you have?How did you know it wasn’t “just” CP?How did you get a doctor to take you seriously?

I already had explained a bit of each of these in some previous pieces (including New Diagnosis, My Journey to Disability Pride, and my CreakyJoints interview), but I wanted to give this person a bit more of a deep dive in one place, and I’m putting it here to centralize it, too!

I have spondyloarthropathy with MRI-proven sacroiliitis mainly concentrated across the right lower lumbar and hip (my CP side). The pain was so different than my typical muscle ache/tightness like someone stuck a hot pointy iron into my hips and didn’t let up. I also had consistent heat coming off the area and it was just ever so slightly swollen. That was the main tell it wasn’t just CP, contrary to what my doctors brushed it off as.

I had to seriously advocate for myself through multiple doctors (PCP, rehab med) with the help of my mom (I’m in peds), before I finally put my foot down to my PCP and said “this is different. Refer me to rheumatology or chart that you refused patient request.” That threat/verbiage request made him write the referral.

My rheum did the typical poking and prodding and declared me a “weird case” but that he “wasn’t saying [I] was making it up.” He ordered 7 tubes of blood and sent me to x-ray then home with methylprednisolone “just to see what would happen.” The x-ray was clear but with HLA-B27+ and the methylprednisolone helping, we ordered a start on sulfasalazine and an MRI.

My pelvic MRI came back with no evidence for ankylosis at the SI joints or erosive changes, but showed patchy loss of marrow fat and subarticular regions bilaterally involving the sacrum as well as iliac bones. Pelvis and included lumbar segments were nominal. The patchy loss of marrow prompted the MRI interpreter to recommend correlation with clinical findings (all the prodding + other blood results), which prompted my doctor to diagnose me with juvenile idiopathic arthritis, separated into sacroiliitis and spondyloarthropathy.

Now, I’m on Humira weekly, as well as leflunomide daily, and those two are my miracle drugs.

If you have any questions about your own journey, feel free to DM me on Twitter or email me at hello@derekschmitz.com with the subject line “new autoimmune help” for a hand or a listening ear. Also, I serve as the Outreach Coordinator at the Autoimmune Community Institute, focusing on providing community support and ensuring health equity for all autoimmune patients, so I may have further connections there if I can’t help with your specific condition or needs.

If you found this useful, a share is always appreciated, or if you can and want to tip me for this piece, you can find all of that info on my Support page. Thank you!

Vocational Rehabilitation Centers are Useful, Hidden Gems in Disability Support

Vocational rehabilitation (sometimes referred to in the shorthand VR or voc rehab) is a division of social support services for disabled people to get and maintain employment, as well as provide support to remain living in the community. And, they’re unfortunately hard to know or find out about unless you know exactly where to look for them. I’ve talked to my partner pretty extensively about the “underworld” of disability support services that aren’t talked about unless you know a person who knows a person, and VR is definitely one of those. But, every state/territory in the US has at least one (find a full list here), and I highly recommend every disabled person at least apply for the services offered by their area.

VR has been essential for me for as long as I’ve been a part of it, and I seriously wish I would’ve known about it sooner. For 14 years, I was in the dark of the underworld and had absolutely no clue these services existed, until my doctor asked “hey, are you connected with voc rehab?” and I asked “no, what’s that?” and he educated me about it and put me in contact with my local people. At 14, I opened a case with Children’s Rehabilitation Services (or CRS) to start on my journey up to voc rehab. And the services I have received have been invaluable to me as I transition from teenagehood to adulthood.

I’m writing this piece because I don’t want any other disabled person who qualifies to have to miss out on these quintessential services like I did for 14 years. You may be wondering “isn’t that their job? Why do you care?” and I would agree with you if I didn’t have the work experience I do. It was shocking to me when I discovered that federal funds cannot be used for community outreach to generate new clients or increase intake. But, it’s true, according to multiple colleagues working within various states’ VR programs. So, I’m taking it upon myself, as an advocate, to do what I (try to) do best: advocate for and share resources.

I will forewarn you, it’s a lot of paperwork and bureaucracy in most instances, but the services are well worth it. I can’t, in good conscience, make very many vast generalizations, but I can almost guarantee it will be a lot of paperwork and hoops. If you’ve worked the system like I have for the last 17 years, what’re a few extra hoops for more help, right? Right.

So, now that we’ve established that, I want to take a minute to list off a few things my VR services have provided me: job opportunities, IEP assistance, college tuition payments, assistive technology, mobility aids, benefits management, and driving assistance. That list is not at all exhaustive, but I wanted to provide a glimpse into some things the paperwork and effort are good for. I would not be nearly as confident or independent without the help of my VR counselor and the services she has curated for me.

And, that’s why I’m such a big proponent of reaching out and ensuring people know VR exists. It’s literally life-changing. The paperwork and occasional bureaucracy hang-up are so worth it for all the support you can potentially receive and all the resources you may be able to tap into. If you’re not connected to VR and think you might be eligible, there’s no harm in applying, and if you need a hand, I’ll be right here to support you. Feel free to email me for help at hello@derekschmitz.com with the subject line “VR help”, or DM me on Twitter if you think I could lend a hand!

Thank you so much for reading, have a great day everybody!

CDC FOIA Update #3

Well, this is a long-overdue update that I’m gonna break into two parts and back-date. This is the second part of that two-part update. The first part can be found here. For reference and transparency, it’s September 2, 2022 as I write this update about events that happened on August 17, 2022.

So, I got a call from the FOIA officer handling my case. I didn’t answer, because I refuse to do anything with the government that is not in writing. He left a voicemail, in which he told me they received the narrowing, but that it was still “way too big” and used the word “enormous” to describe the mass of documents they’re having to plow through to find what I asked for. For reference in case you’re not following the request changes or the series here on the blog, I’ve pasted both prior versions below. Changes are bolded.

Original: I am requesting copies of all: 1. records starting on Jan 20, 2021 that contain information
related to the CDC’s decision to remove the mask guidelines for vaccinated Americans on May
13, 2021. 2. communication (emails, internal memos, etc), starting on November 1, 2021, that
led to the development and implementation of the new COVID-19 Community Levels on March 4,
2022.

First revision: I am requesting copies of all: 1. scientific documents and communications (emails, internal memos/directives, reports, etc) starting on Jan 20, 2021, that contain information related to the CDC’s decision to remove the mask guidelines for vaccinated Americans on May 13, 2021. 2. communication (emails, internal memos/directives, reports, etc), starting on November 1, 2021, leading to the development and implementation of the new COVID-19 Community Levels on March 4, 2022.

I thought that the first revision was specific enough, but I guess not. So, back to the group chat of my 4 friends and colleagues I went. I re-explained what I was looking for specifically to them and we completely tinkered with the wording and moved things around for more clarity. We discovered I hadn’t clearly specified a “who,” that “related to” was way too broad, and that I didn’t specify an “about” for the second point (leading to and about are not the same thing). After some workshopping, this is what I sent back, with changes bolded.

I am requesting copies of all: 1. electronic mail communications between CDC leadership members spanning dates from Jan 20 and May 13, 2021, about scientific data used to justify the decision to remove the mask guidelines for vaccinated Americans. 2. electronic mail communications between CDC leadership members spanning dates from January 1 and March 4, 2022, about the development and implementation of the new COVID-19 Community Levels.

So, I specified that I wanted emails including scientific data and about the Community Levels. I’ve opened myself up to getting hit with a lot of “deliberative process” redaction, but you can see a lot from what’s missing sometimes, so I’m hopeful. I also narrowed down the dates for the second request to start at the beginning of the year, so there’s not as much to plow through. And now, we wait yet again.

If you are a member of the press who would like to have me write an op-ed or have your organization work with me to shed light on these documents after I receive them, please email press@derekschmitz.com with the subject line “CDC FOIA Press” and I’ll add you to my contact list for this project and send emails after I complete my review.

I can’t wait to see what all I get back! If you’re interested in keeping up with everything, follow me @derekischmitz on Twitter for short-form informal updates and threads once the info is received and through the “CDC FOIA Request” category on the site here for long-form updates and analysis.

I’m not in this for the $, but if you appreciate the work I’m doing and would like to tip me, you can find all that info here. You can also find links to my books and affiliate codes there, too! Or, if you know someone who may be interested in this, please share it with them. Thank you!

How I, as a Multiply Disabled, Chronically Ill, Neurodivergent Person Plan and Track Assignments

Hey everybody, Derek here. This is quite different from some of the things I would typically post here (it almost feels like I’m one of those “self-help” blogs or recipe blogs where you’ll have to scroll for ages to just find the recipe), but I was writing this thread about assignment management on Twitter and said “screw it, this is too long to be a thread,” so it will live here now as soon as I hit publish!

Introduction

I’ll start by saying it took me SO LONG to develop a school planning system that works for me. I used every fancy planner, all the calendar apps, and nothing worked for me until I developed my system. It takes a bit of setup, but now that I have it, I could never ever go back. I figured “why not post it in case someone needs it”… so here it is!

I take a multifaceted approach to scheduling/planning/pacing using different tools and methods. I have the calendar app on my phone for events I call “solid” (pre-planned meetings/calls/press/etc). I have an undated paper planner with a to-do section for more wiggly events/tasks (this is the one I use and it fits this stuff perfectly). And I have a Google Doc strictly for assignment due dates.

To simplify that:

Device calendar: solid eventPaper planner: soft events/tasks that don’t need to be on the calendarGoogle Doc: ASSIGNMENTS!The Device Calendar and Planner

It will be much easier to explain my device calendar and planner setup than it will the Google Doc, so let’s dive into these things first. If you’re here for the G Doc specifically, just scroll until you see the next spacer and you’ll be right there!

Calendars:

I work with four different organizations (although one of them is my personal brand) and have school virtually, all of which have hard events (whether it’s meetings, calls, or who knows). I also have personal events (including doctor’s appointments and family time). For me, I had to have an easy, straightforward way to distinguish personal from work. So, I do that with calendar colors.

Everything that is work, including school events, is in one color (for me, it’s orange, so it catches my attention). Everything that is personal is a different color (for me, it’s light blue). I’m also set to “read-only” on my mom’s calendar, which is brown. My mom is set to read-only on most of my calendars too (with the exception of confidential organization work). We do this to make it easy for us to see when to schedule appointments (I’m a minor, so she has to handle most of the scheduling of my appointments for me). Everything that is hard (set in stone) is put on a device calendar as soon as it is scheduled.

The Paper Planner:

My paper planner is GREAT! It’s the most variable, flexible piece of my planning system. Nothing gets put into the planner until the night before and it’s all done in pencil, so it is easy to change. I keep a consistent wake-up time (normally around 7:30am) written into this planner, every weekday, and write myself an hour to get out of bed. Then, I write in an hour or so to work out, shower, and eat breakfast. Then, I take the hard events from my phone and write them into the paper, so they’re “double solid” and I know they’re coming as I scan my planner in the morning. I’ll identify 5 top priorities, and 8 to-do items in their respective spots on the left. I write in rest. I write in lunch. I write in family time and time with my partner. Everything that will happen, is expected to happen, or is happening will hit that planner and change fluidly the night before and the day of.

And now, the awaited Google Doc setup guide:

The Google Doc

At the start of every semester, I create the Assignment Planning Document. This document includes a list of all my appointments during school hours, a solid tally of how many assignments I have total for the semester (and separated further into a tally per month, which we’ll get to in a second), a running tally how many assignments I’ve completed total for the semester (and separated further into a tally per month), and a highlight color system (red = late and pending, yellow = turned in late, green = on time).

While creating this document, I run through my phone calendar (hard events) and put all the ones during school hours on that first list. I then divide the document by month, and add any school holidays throughout. Using the pacing guides my school provides for each class, I also separate the document further by due date and add the assignments under each due date.

After that data is input and the tallies for assignments by month are done, I add an accountability partner to the document. Having an accountability partner here, in this segmented-off aspect of strictly education and deadline management/compliance has been HUGE for me. I have to know “XYZ person (who is not a parent) can see if I’m actually doing the work or not” to be motivated. So, that’s what I do.

That sounds EXTREMELY complicated, I know. I doubt I did a fair job portraying how “simple” it is for me to set up. To give you a head start, here is a copyable template that you can use! It has the barebones (the “appointment list” template, the tallies, the color code system, and the month breakdown), ready for you to input your data/information after you click “Make a copy”. Please know: I will have no access to any of your information after you make a copy of the template.

Conclusion

This took way longer than I thought it would to put together, honestly. I’m laughing at myself right now as I’ve spent the last two hours and change writing up this piece that WordPress estimates can be read in 6 minutes.

I’m so glad I decided early on to pull this off of Twitter and put it here. It just came together better here, and now it’s easy to reference with its new shortlink, https://go.derekschmitz.com/howtoplan!

In the interest of full disclosure, I will let you know that I am an Amazon Affiliate. I may receive a commission if you purchase the planner linked above, or use any Amazon links on this site.

I really hope this system helps some folks out! If you have any questions or comments about it, feel free to email me at hello@derekschmitz.com with the subject line “Planner” or just slide into my DMs over on Twitter @derekischmitz! If you found this useful, a share is always appreciated, or if you can and want to tip me for this piece and the associated resources, you can find all of that info on my Support page. Thank you, and happy planning!

The IEP System Needs Reform

Hi everybody! Before I get into this post, I need to stress that the views expressed here are my own and are not endorsed, vetted, or reflective of my employer’s or educational institution’s thoughts, beliefs, or official statements. Additionally, I’d also like to stress the purpose of this post is strictly education, and that all circumstances alluded to do not inherently reflect my experience. With those disclaimers out of the way, I want to say that the entire Individualized Education Plan (IEP) system needs reform, and I’ll expand on why as you keep reading.

Before I get into my reasoning as to why reform is needed, I want to provide some brief definitions for those who may be unfamiliar. I suspect most who will read this will have some experience in Special Education or have a disabled child who has gone through these processes, but I want to provide definitions to ensure my post is accessible to all who come across it. An Individualized Education Plan (IEP) is a legally binding and individualized document and plan drafted by the IEP Team [typically consists of a parent, student (if appropriate, and newsflash, it’s almost always appropriate), a general education instructor (like the student’s math teacher, for example), a special education teacher who will most likely become the student’s case manager (the person who helps the student and ensures all documented accommodations are provided), an “LEA representative” (Local Educational Agency representative, typically a principal), someone who can “interpret results” of diagnostics and testing (oftentimes the SpEd teacher, LEA representative, or a member of the district’s IEP team), and if desired, a representative from an external agency (like rehabilitation services)] that establishes a student’s disability status and identifies services they need to receive a FAPE (free appropriate public education) that may differ from those of their non-disabled peers. That’s a lot of jargon to say that an IEP is a document that ensures a student receives accommodations due to their disability. I also used the term “Special Education” and “SpEd” above, which I’ll define as a program within schools tasked with carrying out the IEP and providing “additional” services to ensure a student receives a FAPE. I dislike the term “Special Education” because my needs aren’t special, they’re just things I need to access services, but to keep things brief and use current terminology, I’ll bite my tongue and use the term. Now that we’ve got definitions established, let’s hop into why reform is desperately needed.

Firstly, the process of qualifying for an IEP is grueling. I believe this was by design, as a way to scare or discourage already disparaged students and families away from seeking accommodations. To even qualify for an IEP, a student must fit a slim definition or category of disability that varies by every state. Additionally, the diagnosis/diagnoses must be verified by an extensive amount of medical documentation from doctors, and in many cases, specialists that some families may not have access to. This area alone disqualifies many, including myself when I was younger, from getting an IEP. After initially qualifying for an IEP, the student must be further assessed by the school district to, in all honesty, determine if the student really is “disabled enough” to qualify. I have a personal bone to pick with that piece, but I’ll save it for another post. These district assessments often include arbitrary IQ tests, life skills assessments, consideration of socioeconomic status, and other potentially dehumanizing tests and assessments. I understand the purpose of these assessments, however, they often pose additional barriers or establish a student’s assumed “value” in the classroom to how well they perform on these assessments. This is another area that phases out many students, as they may perform well on these assessments. However, just because a disabled student does well on their assessments, that does not necessarily mean they should not receive services.

Now, let’s say a student does meet all the criteria and tests into services. That’s only the beginning. The team will draft up a 15+ page document that describes all the testing and concerns, as well as accommodations, for the family and teachers to skim through, hoping to find the accommodations section on page 10. But wait, you’ve gotta have a meeting to discuss all of that first, with everybody on the team. Often, there are multiple scheduling conflicts on the date and time that works best for the parent and student, so the student/parent has to wait and try to make things work on their end to facilitate the meeting. Now, the meeting is scheduled! This should be an easy meeting, the team has everything they need, right? Nope. Now, the parent and student must review every section of that document to correct and offer input on what should change. Oftentimes in an initial meeting, this includes a question of “what accommodations are needed?” and the follow-up “do you really need that?” I was lucky enough to avoid most of that issue, as I was moving from a 504 Plan to an IEP and most of my accommodations were already solidified, but even the prospect of my accommodations being questioned by the team scares me. If I (or any student, for that matter) says we need an accommodation, we need it, and truthfully, we needed it yesterday. The student and parent are often in a “hot seat” being required to advocate for the student’s best interests and needs. This, in and of itself, is soul-draining and exhausting. Sometimes, the team can overpower the parent and student and flat deny to include a requested accommodation in the plan, or bury words in the plan that the parent and student object to. For example, I was outed in my first IEP and didn’t catch it until three days after I received my official copy. This, if received by my teachers, could have posed a significant risk to my safety and opened me up to discrimination. So, parents and students must learn to advocate for themselves in these meetings (or include an external agent to do so on their behalf) to ensure all of the student’s needs are met and abided by.

The IEP is now in place, yay! Or… not? Even though the plan is in place, it now falls onto teachers to implement and requires the student or case manager to further advocate and ensure a FAPE is truly being provided. This part will vary by student, case manager, district, teachers, etc, but I have needed to request that my case manager step in to remind teachers of accommodations they were not following. Aside from that, now that the plan is in place and the student/case manager have reiterated the specific needs to the teacher, there should be no issues.

But, wait, remember that every year (and multiple times/year if extremely important amendments are needed urgently), the team must convene again and revisit the plan! During this meeting, the team discusses if the student is “still disabled,” where the student is academically, and if new accommodations need to be added. And, that process looks like a “lite” version of the initial meeting, and there’s still a lot of advocacy involved to keep or change accommodations.

Now, I want you (the reader) to read all 700+ words of the past four blocks over again and imagine living it. Imagine constantly having to advocate for yourself or your child to ensure their needs are met. Imagine having to sit in grueling potentially hours-long meetings where a team of people who work for the school and have no/very little medical experience questions the need for you/your student to receive accommodations. Imagine, even after that, still being required to fight for your/your student’s needs. Just sit with it for a moment and imagine. Sounds tough, doesn’t it? That’s because it is.

But, there are ways to change it, and these are my top three suggestions:

Change the methods of testing a student for Special Education services to be more inclusive. If a student has medical documentation that notes a need for accommodations, provide them without question. If a student does not have a medical diagnosis or the resources to get one, but clearly needs services, provide testing to identify where and what help is needed, then provide those services. This ensures that no student “falls through the cracks” or gets left behind because of their inability to “test in” or their family’s inability to get medical documentation.Believe the student’s need for a requested accommodation. The purpose of creating an IEP is to allow learning in the “least restrictive environment” and improve the educational results of the student. Disabled students work best when all of their needs are met, and denying or inhibiting the implementation of some, directly counters the purpose of the IEP in the first place. As I mentioned above, if a student asks for accommodations, they needed the services yesterday.Make the language of an IEP make sense, and change the format to highlight the most important things first. Most of an IEP, to most families, is jargon that does not make sense. A 15-page document with accommodations on page 10 does not make sense for teachers who need to quickly identify which student needs what services. An IEP should make sense, or use “people language,” to ensure parents and their students can understand what is being written, assessed, and provided in the IEP. All elements of the IEP are important, however, the most important is the “Profile” (about the student as a person) and their accommodations. If those two sections were together and used “people language,” it would allow skimmability and better understanding by both parents, students, and educators, and most likely lead to better compliance with the needs of the student.

These suggestions, if implemented on a wide scale, would make the process of getting, understanding, and implementing an IEP significantly easier. The suggestions reduce the burden of proof for families, ensure all appropriate accommodations are met, and make the IEP a “living document” that reflects the student and their needs in a way that makes sense to them.

Some may call a new IEP system that included these suggestions a “dream” or a “long shot,” and they would both be right. Creating a new system like this is a long shot that will most likely require rebuilding from the ground up, however it incorporates so many important changes that students, parents, and educators need to ensure all students receive a free appropriate public education. I dream of implementing something like this, not for me, but for those who get put through the wringer after me. And I will not stop fighting until I make it happen.

Thank you for reading.

If you liked this article, I would appreciate it if you would consider sharing it or sending me a tip (completely voluntary!) with Ko-fi, Venmo, or Paypal. All of that information can be found  here  if you want it. As always, if you need a listener or extra support, feel free to shoot me an email at  derek@derekschmitz.com  or DM me on  Twitter . Thank you so much for reading!

I LED my IEP Meeting Today

As a disabled high school student, I have always received accommodations. When I started my journey, I had a 504 plan, but as I matured and realized I needed more support, I decided to make the swap to an IEP at the end of freshman year.

I have always been extremely involved in the accommodations process. As such, I would always advocate and disclose my needs to the team and get frustrated when they turned to my mom for answers. I started the IEP process, I played into their arbitrary tests that often insulted my independence level, so I should be the one to have a key role in my education and accommodations. And, so that’s what I did. I was present at every meeting, and I communicated with my case manager on a daily basis to update her on my progress and express my needs.

Today, I took it a step further and LED my IEP meeting. My case manager and I spent weeks making painstaking and tedious edits TOGETHER. It was open flow communication. She told me “here are the guidelines and format we use, and here’s your last IEP” and then asked me to edit the working document with every single change I wanted to make before she made an official copy. Then, we spent all of yesterday making edits and final corrections. Today, I logged onto the call 15 minutes early, and set up a game plan. Everybody logged in and then I took the whole meeting. We discussed every aspect of my IEP, led by me, in a way that made sense to me. We set my goals for next year, decided my classes, discussed test scores and teacher input, and developed a concise but extremely inclusive plan that meets ALL of my needs in the way I need them met.

Today was groundbreaking. For me, it was an invaluable learning experience about taking charge. For my guidance counselor, teachers, IEP case manager, and vocational rehabilitation counselor, today was the first time they saw a student lead an IEP meeting.

I made history today as the first student to do so in my district. But, I will not be the last. I hope to be a role model for other students, in my district and the state as a whole, to show them that taking control of their own accommodations is possible and that their voice MATTERS in the way they receive an education.

Huge accomplishment today, and I’m glad to be leading the charge as the work continues to make education accessible for all of us.

First on Twitter: Reflections on April 27, 2011, 11 Years Later

The following is an “unrolled” archive of this Twitter thread.

Trigger warning: tornadoes , grief

11 years ago today on April 27, 2011, I was 6 years old. I don’t remember much, but I do remember loving the weather.

I remember going to school and the TV was on James Spann (@spann). I watched him all day. The tornadoes on TV were terrifying. We went home a little early, and when I got home I kept watching the weather. Later in the evening, I remember hearing the sirens (county-wide legacy system) non-stop for what felt like ages. I was scared but stayed safe.

Then came watching the aftermath. I remember watching someone get pulled out of the debris with their back stabilized on a wooden door. I had nightmares about that scene for months.

The outbreak on April 27, 2011, was generational. While I wasn’t personally affected by a storm other than having water damage, every single year when the date rolls around, I am filled with dread, grief, and a sense of mourning.

Alabama’s infrastructure has been rebuilt, but I still think about the 252 people who died and the families who cannot get their person back. Remember that things can be replaced, but people can’t. I got lucky. Hold your people close.

CDC FOIA Update #2

Well, this is a long-overdue update that I’m gonna break into two parts and back-date. This is the first part of that two-part update. For reference and transparency, it’s September 2, 2022 as I write this update about events that happened on April 1, 2022.

Remember how I said that I intentionally made the request extremely broad? Yeah, that came back to bite me in the ass.

Firstly, I received the acknowledgment letter. Fairly standard “we got your request” type verbiage, until we get about halfway through the letter and my request is labeled “complex.” The letter states that my request will take longer than 30 days because:
“• We reasonably expect that two or more CDC centers, institutes, and offices (C/I/Os) may have
responsive records.
• We reasonably expect to receive and review voluminous records in response to your request.
•We reasonably expect to consult with two or more C/I/O/s, or another HHS operating
division or another federal agency about your request.”

There was also a suggestion to tighten my scope, and conflicting information on my fee waiver request. One section reads: “You requested that we waive fees associated with processing your request, your request is granted…” but the section right after that reads “You requested that we waive fees associated with processing your request, your request is denied because it doesn’t meet the following criteria:
• You have failed to demonstrate that you disseminate information to the public.
• You have failed to provide enough information to warrant a waiver of fees.”

So, I don’t know about fees or anything like that at the moment. But, I digress. I’ll pay whatever they throw at me to get this info out.

The second letter I received was just a PDF entitled “BroadVague.pdf,” and this was when I knew I really was getting bitten in the ass. The letter notified me that I had “not submitted a proper FOIA request because [the] request lacks the specificity needed to assist the agency retrieve the information with a reasonable amount of effort” and instructed me to specify document types rather than just “records” with a stern warning that if revisions weren’t made, the case would be closed on May 2.

For reference, this was the initial request:

I am requesting copies of all: 1. records starting on Jan 20, 2021 that contain information
related to the CDC’s decision to remove the mask guidelines for vaccinated Americans on May
13, 2021. 2. communication (emails, internal memos, etc), starting on November 1, 2021, that
led to the development and implementation of the new COVID-19 Community Levels on March 4,
2022.

I saw how it could be too much to handle, and there was no way in hell I would let the case close without any answers, so, I got to work on revisions, with the help of my partner and a team of 4 of my colleagues and trusted friends. This was the final revised version I sent back with the changes bolded for clarity:

I am requesting copies of all: 1. scientific documents and communications (emails, internal memos/directives, reports, etc) starting on Jan 20, 2021, that contain information related to the CDC’s decision to remove the mask guidelines for vaccinated Americans on May 13, 2021. 2. communication (emails, internal memos/directives, reports, etc), starting on November 1, 2021, leading to the development and implementation of the new COVID-19 Community Levels on March 4, 2022.

So, I made it a little more specific. And now, we wait yet again. But, you don’t have to wait, because update #3, the second part of this broken-up update is available now here.

If you are a member of the press who would like to have me write an op-ed or have your organization work with me to shed light on these documents after I receive them, please email press@derekschmitz.com with the subject line “CDC FOIA Press” and I’ll add you to my contact list for this project and send emails after I complete my review.

I can’t wait to see what all I get back! If you’re interested in keeping up with everything, follow me @derekischmitz on Twitter for short-form informal updates and threads once the info is received and through the “CDC FOIA Request” category on the site here for long-form updates and analysis.

I’m not in this for the $, but if you appreciate the work I’m doing and would like to tip me, you can find all that info here. You can also find links to my books and affiliate codes there, too! Or, if you know someone who may be interested in this, please share it with them. Thank you!

I Submitted My First-Ever FOIA Request

Hey everybody! I’ve been talking about the FOIA request I submitted to the CDC over on my Twitter for a few days now, but I wanted to centralize everything!

I (and many, many other disabled people) have always been skeptical of the CDC from even before the COVID pandemic hit. Then, it hit, and the lack of transparency under two administrations is something very few of us expected. I mean, I expected it under Trump, as his whole thing (that’s been admitted to, by him, on the record) was downplaying the virus. I thought it would get better under Biden. I remember thinking “surely, it can’t be worse than this” back in 2020. It could have been, and it is. Now don’t get me wrong. Biden has fixed some things and done some things right (see vaccination rates, for instance). But, it’s still really bad.

I want to see exactly where shit went wrong. I have a particular interest in the mask mandate reversal back from May 2021 and the new community levels that were just put in place on March 4 of this year. So, I submitted my first ever FOIA (Freedom of Information Act) request to the Center for Disease Control and Prevention on Tue, March 29, 2022.

Now, some of you may be asking: What the fuck is a FOIA request? The Freedom of Information Act is a law that requires disclosure, upon request, of any non-exempt government information. A FOIA request is a written request for that disclosure. As I mentioned, there are nine exemptions that can prevent documents from disclosure if they are: classified for national security, details of internal rules and practices, protected from disclosure under law, trade secrets, privileged communications, privacy violations, law enforcement, financial institution information, and well locations.

Now, we have the basics out of the way. I put in an intentionally broad request to see what I can find. I requested “copies of all: 1. records starting on Jan 20, 2021, that contain information related to the CDC’s decision to remove the mask guidelines for vaccinated Americans on May 13, 2021. 2. communication (emails, internal memos, etc), starting on November 1, 2021, that led to the development and implementation of the new COVID-19 Community Levels on March 4, 2022” from the CDC. I intend to scour this data and publicize them here and in threads on my Twitter page after I review the documents. As of March 30 at 3am Central Time, my request’s status is “received.”

In these documents, I am primarily looking for the “science” they used that supported the changes to masks and community infection measurements. I am also looking to see what pressure CDC faced from the White House to revise mask guidance. If you remember, the CDC guidance came down as Biden said “COVID will be over by July 4”, so I’m looking to see if CDC was forced into the decision or if data really supported the change.

I am anticipating this process to take quite a while (as the government moves slow as molasses) and for large chunks of data to be redacted under Exemption 5(1): Privileged communications within or between agencies, including those protected by the Deliberative Process Privilege, however, it will be interesting to see what is unredacted.

I have already received praise for “walking the walk”, “getting answers”, “exposing the truth”, and so many other things. Plus, my Twitter following has almost doubled since I announced I filed. I’m honored and humbled to be in a position where I can file these requests and help get answers for the people. However, I ask you all to remember that I am still a 17-year-old. I may be a highly motivated 17-year-old, but I am still 17. So, I ask for patience as we all wait on the edge of our seats for the response, and even more patience as I work through the documents. I am anticipating receiving thousands of pages of documents, all of which I (and a few people who I have recruited to assist me) will have to manually pour and pick through for important information.

My goal in doing this is to expose where shit went wrong in a way that is understandable to people who may not be as involved as I or my friends are. That also takes time. So, I ask for patience more than anything right now.

If you are a member of the press who would like to have me write an op-ed or have your organization work with me to shed light on these documents after I receive them, please email press@derekschmitz.com with the subject line “CDC FOIA Press” and I’ll add you to my contact list for this project and send emails after I complete my review.

I can’t wait to see what all I get back! If you’re interested in keeping up with everything, follow me @derekischmitz on Twitter for short-form informal updates and threads once the info is received and through the “CDC FOIA Request” category on the site here for long-form updates and analysis.

I’m not in this for the $, but if you appreciate the work I’m doing and would like to tip me, you can find all that info here. You can also find links to my books and affiliate codes there, too! Or, if you know someone who may be interested in this, please share it with them. Thank you!

My Thoughts on Payan v. LACCD

Disclaimer: I am not a lawyer or paralegal. The following are simply my analyses and commentary on the Payan versus LACCD case from the standpoint of someone interested in law. These thoughts are personal and do not necessarily represent the views of my employers.

Hey, y’all, Derek here to provide my thoughts on the Payan v. LACCD case. I was made aware of the case this morning after seeing DREDF post about it on Twitter (they have a great explainer here, as well as a petition). This case is a direct challenge to the ADA and is extremely important to the disability community.

The case started when a few Blind students sued the Los Angeles Community College District due to inaccessible course materials. The school argued on the basis of disparate impact, or that the discrimination was unintentional and systemic, and because of those qualifiers, it did not need to be rectified and could not be acted upon in court. This is false.

The ADA requires all institutions to provide reasonable accommodations to disabled people, and in conjunction with Section 504 of the Rehabilitation Act of 1973, extends that requirement to educational institutions. These students made repeated requests for rectification on the matters of course material inaccessibility. The only way LACCD could logically “get out” of providing these accommodations is if doing so would place undue hardship on the organization. Rectifying this issue would not place undue hardship on LACCD, the largest community college district in the US. As such, the case was brought.

Courts have agreed with LACCD in some aspects, allowing their claims of disparate impact on the front of the website and library to stand, as they affect a broader population than the students who brought the case. However, the basic fact that the named students were discriminated against also stands. This led to the dismissal of LACCD’s attempt at limiting enforceability of the ADA due to disparate impact.

Essentially, the ruling from the appeals court boils down to one quote from the proceedings: “Section 504 and the ADA were specifically intended to address both intentional discrimination and discrimination caused by ‘thoughtless indifference’ or ‘benign neglect,’ such as physical barriers to access public facilities.” This ruling had one dissent, and the case was left open to escalation as the appellate court reversed the district court’s ruling.

LACCD has now planned to file a SCOTUS petition regarding this matter on March 4, 2022. It is likely LACCD will lose this case, as it would take an extreme interpretation of the law for them to win. However, the implications of success for LACCD would be grave. According to the DREDF interpretation (linked above), if LACCD succeeds, “the Supreme Court will rule that the ADA and Section 504 do not prohibit “disparate impact” or unintentional discrimination.” With this form of discrimination being most common, its prohibition is at the heart of the ADA and Section 504. A ruling in this manner, though unlikely, would essentially gut the ADA.

As I mentioned, it is very unlikely that the Supreme Court will rule in favor of LACCD. The plaintiffs (Payan) have won the case twice in all lower courts. It would take an extreme interpretation of the law, which would overturn all precedent, for the college to win. Even though the court is majoritarily conservative, it is unlikely they would interpret the bipartisan law in a manner that would allow LACCD to win.

Though the probability of LACCD losing their case is very high, we must also remember the implications of LACCD winning as we evaluate this case. I urge you to join me in signing the petition and following this case closely. Thank you for reading.

(Psst, if you like this analysis, feel free to share it or tip me! Thank you!)