A teenager taking the exam to get their driver’s license. A soldier completing a test to upgrade their rank. Someone taking the bar exam in hopes of getting into law school. An athlete gets a medical exam in order to participate in sports. There are many different types of exams that people do. In most cases, the exams are tools that prove whether people are capable or incapable of doing something. Generally speaking, people want to “pass” the exam, so that they are able to move forward with whatever it is that they are trying to accomplish. A lot of the time, “passing” the exam is an exciting accomplishment; however, there are times when doing well on a test or screen isn’t necessarily a positive thing.

A few years ago, I wrote a journal entry about how many times, people—especially those who have disabilities--are unintentionally interrogated.  I talked about how people with disabilities often have to repeatedly answer questions about what they’re capable and incapable of doing. The questions are asked in order to determine how much support and funding for services the individual receives. Despite the screeners being nice and understanding, anyone who has had to go through a functional screen, knows that they are usually pretty emotionally draining. Why, you ask? Simply because you’re asked about all of your abilities and inabilities. As I pointed out in that entry, after doing a couple of them, you learn to make yourself sound as “needy” as possible, so you can get the support you need. While I don’t lie, I’ve learned to make myself sounds as vulnerable as possible when I do those screens. I was lucky enough to have both my functional screen and my screen for Self-Directed Personal Care hours within weeks of each other this year (insert sarcasm).

Through the grapevine, I had heard that many people’s budgets and personal care hours had decreased this year even though nothing had changed. Sure enough, my personal care hours decreased by a few hours. While, it’s not particularly surprising given what’s happening federally, it’s incredibly frustrating! So, what happens when budgets decrease or personal care hours decrease? Depending on the situation, sometimes, if the decrease is not significant, a person might be able to make do with it by rearranging some things in their budget; however, often, people can’t make do. What happens when people are not able to make it work without the given support? In the IRIS program, participants can request a Budget Amendment for a particular service or support.

I may have written about going through a Budget Amendment process in past entries. Depending on what the amendment is for, in addition to the consultant having to do lots of paperwork, participants have to provide different documentation for it. Since my personal care hours decreased, I need more Supportive Home Care hours to make up for them. As I’ve explained before, I have 16 hours of care per day which equates to two eight-hour shifts per day. In order to maintain that, I will need a couple more hours of Supportive Home Care. My current consultant is amazing and she’s on top of everything. As soon as she got the results of the screens, she emailed me right away realizing that we’d probably need to do a Budget Amendment. As she started the paperwork, she emailed me saying that she needed an updated caregiver task schedule. What this is is a document laying out what the caregiver does for every 15-minute segment for the entire 16 hours that they are here. I initially had to do this about two years ago when my hours significantly increased. Think about that. That’s 64 time increments to have to fill with a specific task. While we did it because we had to, it’s just not realistic for someone to person to plan out their life in 15-minute segments--that’s just not how life works. This is especially frustrating to have to do when I have notes from two different doctors stating I need 24-hour care. One would think that a doctor’s note would hold enough necessity, but that’s not the case. Personally, it doesn’t make any sense to me. As it turns out, we ended up not needing to submit a request for a Budget Amendment this time because my regular IRIS budget increased enough that we were able to make everything work, but it could all change next year when I’m screened again.

Supports and services aren’t the only things that people who have disabilities have to go through hoops in order to prove they need. As I’ve talked about in previous entries, Durable Medical Equipment (DME) is another thing that people often have to prove they need in order to get it funded. It often takes many justification notes and therapist evaluation reports in order to get a piece of equipment covered. More often than not, this process takes months. Depending on what the equipment is, a person could be left not able to live their life while waiting for funding to get approved. In my opinion, this is one of the most major flaws in the so-called system.

Social Security and Supplemental Security Income are also things that require proof on a regular basis. Additionally, Medicaid requires a rigorous review annually (in Wisconsin). Obviously, a lot of these benefits are interconnected, but individuals still have to provide proof that they need it. The renewal process for these benefits can be especially daunting because if you miss checking a box or don’t upload documentation correctly, you’re at-risk of losing your benefits that provide the supports that you need to survive.

While some people have conditions that change over time, many people don’t. Having to constantly prove that you need supports is not only time-consuming, but it can be mentally and emotionally exhausting. As I’ve said before, many of us don’t think about having a disability until circumstances present themselves. When you’re constantly having to prove you need services and supports, it’s often a reality check of your circumstances. Unfortunately, I don’t see anything changing in the near future—in fact, given today’s political environment, it may get worse before it gets better. That’s why it’s so important that we keep relentlessly advocating for what we need!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.