As I traverse the terrible world of disability and public services, I keep finding myself saying, “The system is so incredibly broken.” With my health insurance, I have to call up to 20 of the providers listed on the insurance company’s website to find a provider that actually takes my insurance and also has availability. The nurse practitioner I saw for psychiatric care for my psychosis issues actually told me my problem might be that I have ghosts in my home (true story). Every time I find some sort of path to take to get help, I end up being blocked somehow. Every system seems to be broken. Every website I use to apply for benefits is broken. I can’t help but think how broken our systems are. But…the story of my application for SNAP benefits proves these systems aren’t actually broken, they’re just designed for failure, and they are working “properly”.
When I first applied for SNAP benefits in early January 2024, I ended up having to submit my application 7 times. Halfway through my application, the website would fail and kick me out. It said it would save my application so I could continue later, but it never saved anything. I had to keep typing the same information. On my final try, I couldn’t enter information into some of the fields, because it did retain information from my last application attempt, however, the information needed to be corrected. I was unable to correct it and had to submit it as it was. This website, known as Illinois ABE, looks (and acts) like it hasn’t been updated in 10 years. It’s not even available on weekends.
It amazingly only took about 2 weeks to get a phone interview. The representative went over all my information and told me she would approve the application. I should receive my documents in 3-5 business days. 3 weeks went by and I received the following update letter:
It said I didn’t submit all the documents that were needed. To be clear, I submitted every document I could for the categories listed on the website. I have no other documents to submit. The letter sent to me beautifully sums up how ridiculous all the processes are. It says to submit the documents listed below. When you check below, it says to “see above” for the documents needed. Circular logic that cannot be fulfilled.
I never received anymore documents from the agency. Several weeks went by and I checked the status of my case on the website. I saw that it had been denied a week prior due to “missing documentation”. Because of course it did. And I still hadn’t received the denial letter. I immediately appealed the decision through the website. 1 week later I received my appeal verification, and the missing denial letter on the same day. I eventually received a letter saying the appeal would be a phone call on April 2nd.
Someone from the SNAP office waited until the day before my appeal was supposed to take place and finally called me. I explained the situation to him, and he said my claim was denied in error and he would “send it back to the office”, which means the claim starts over again and will get re-reviewed. I didn’t believe that was a guarantee of approval though. He told me I should cancel my appeal because of this. I wasn’t so sure about that advice. I was 3 months into an application that should have been resolved in 3 weeks based on what the original representative told me.
My appeal was supposed to be a 9:00am on the 2nd. Someone called at 10:40. I could hear them, but they couldn’t hear me. Because of course that happened. Then they hung up the phone on me. Thankfully they called back 5 minutes later from a different phone number. It was an Administrative Law Judge. He asked if I wanted to cancel my appeal. I told him that since my application still hasn’t been approved, and because I think it was denied improperly, then I would like to keep my appeal in place. The representative I spoke to the day before suggested cancelling it, not me. I can’t trust that it will be approved when it’s sent back for processing. The judge should be able to approve it on the spot when they review it. The judge then told me another judge will call me later to hear my appeal. I don’t know why we need one ALJ to call me and tell me another ALJ will call me later to hear my appeal. This system is clearly designed for failure.
The SNAP representative called at 12:35. It was the same person from the day before, but he didn’t seem to have any memory of speaking to me. He spent a lot of time looking everything over and told me he would approve it and I would no longer need my appeal. I was very confused. Was that conversation with the SNAP representative my actual appeal? Would another ALJ be callling? Why are so many people calling, but nobody seems to know what’s going on? I asked why the representative said they approved it in January, but it never actually got approved. He said it was approved in January, then it was de-approved in February for reasons he couldn’t figure out.
I asked why the day before he said he was sending it back to the office, but today he was confident it was approved. He said he was approving it on the spot today and that I should withdraw my appeal. He said another ALJ would be calling me.
The ALJ (a different one from earlier) called and spoke with me about withdrawing my appeal. I told them I would only be comfortable with that if the case was actually approved. The judge ended up giving me more information than anyone else throughout this ordeal. She told me the approval was indeed entered, on an “emergency basis”, and that it also covered back-benefits to January. She said I would have access to the benefits within a few days. Because it was resolved, I withdrew my appeal and thanked the judge for the help and the information.
It seems they very much do not want these cases to actually go to appeal. I imagine the judge would approve it on the spot. I would look bad for the representatives and the agencies for not approving something that so clearly should have been approved. They would have to defend their decision for denial, which in this case, I felt was a software glitch. The representative entered it on an emergency basis in order to avoid the appeal with the ALJ. The day before, he was only going to send it back to the office for processing. This time, when I pushed the appeal, it got approved on an emergency basis. I’m glad I didn’t withdraw my appeal. I got all the results I wanted by being the squeaky wheel.
Social Security is a whole other ordeal. I applied for that at the same time as SNAP. At least the website didn’t break on me. I received the following update about 3 months after submitting. It’s the first status update so far. The “25%” progress bar is very misleading. It doesn’t mean they are 25% complete, it only means we are at 25% of the “typical 343 days”.
These are systems that are more broken than I have ever seen in my life. You can see how it is actually designed this way. Whoever came up with these processes and work flows should never be allowed to design these things ever again. It makes me wonder why we have these services at all. Why offer something only to have a process so broken nobody can access it? Why not just not offer the services at all? If we are offering these services, then we need to be able to access them.
In the end, there was a safeguard in place with the appeal to an Administrative Law Judge. Thank goodness for that. I’ll never understand these systems, but now I know I have to keep fighting it and take advantage of the appeals. The next denial I have coming is Social Security Disability. That has also been ongoing for 3 months without any updates or progress. It might take up to a year, and most people get denied on their first application. These services are supposed to be safety nets. Instead they are nightmares.
Let me be very clear: I am grateful for these services. Medicaid is better than nothing. Without it, I would have no chance. No future. No hope whatsoever. I would have no access to healthcare at all, and I would be left to die. I am writing about it so people know how frustrating and demoralizing the process can be. I want it to get better. I want those who need it to have better access to care and other services. We need to work to make the systems that administrate these programs work better. I have hope that it can be improved. There are many people who want to destroy these systems altogether. I am not one of those people. I want to bring attention to the problems so we can work to improve the system, and improve access to it.
Update 4/16/24: It has been 10 days since the Emergency decision and I finally received my approval letter. I have not received my Link EBT card, nor is there any information about it. Baby steps.
Update 4/19/24: The EBT card finally arrived! I set up the PIN, and put it in my wallet. I will now have to test it out. I’m glad it FINALLY worked out. As long as they don’t de-approve me again.