Stacy Ellingen

Category: Stacy's Journal

“When a person can make more money flipping burgers at McDonald’s or stocking shelves at Walmart than they can helping people literally live, it’s nearly impossible to find people.” I use something to that effect when I talk about the caregiver shortage. The workforce shortage has elevated to the crisis level in recent years, and now it seems to be even more of a dire situation. The national guard is assisting in some of the state institutions. Nursing homes are turning people away because they don’t have enough staff. People are going without care in their homes. Elderly parents are being forced to take care of their adult children with disabilities. It’s endless. Something has to give, but nobody seems to know what the solution is.

I’ll be honest--I’ve been extremely lucky for about a year and a half with staff. I’ve had a decent core group of girls who have been awesome about helping me cover shifts. They’ve also recruited friends of theirs to work with me. Sure, we’ve had rough patches where shifts weren’t able to be filled, but, for the most part, it’s been really good. Having said that, I’m finding myself scrambling to find people to hire. Right now, most of my workers are college students, and they have clinicals or internships. Then, ultimately, obviously they move on. They’re also typical “college students” and, to no fault of their own (I get it—I once was in college too), socialization often comes before work. As I get older, I notice how prioritizing changes with age. As the age gap grows and I deal with young kids, it’s very apparent that priorities differ with age.  

I knew it was coming and knew the drill all too well. I posted on the website where you can post a job without paying (the website only sends you a few applicants when you don’t pay, but most websites won’t even allow you to post unless you pay) and I posted on every Facebook job group I could find. I posted it on my own profile and ask my friends to share it as well. I always have my ad up on Handshake which is the student employment website for UW-Oshkosh, but I haven’t had much luck with that—I’ve been told students don’t look on it very much. With those advertisements up, this time, I’ve literally got three names. One of the people is a past caregiver’s daughter who has just graduated high school and finished the Certified Nursing Assistant (CNA) class and want to get some experience. The other two came from the website and we’re interviewing one of them (if she shows). I probably could use two or three more people, but I can’t find anyone even interested.

This is a common problem across the state. Workers in almost every field are desperately needed. It’s almost like jobs are competing against each other, and, unfortunately, caregiving is often considered “dirty work” which nobody wants to do. For the millions of people like myself who literally rely on caregivers to survive, it causes a serious problem.

Rates increased a little bit at the beginning of the year which definitely helps, but it’s nowhere adequate for what caregivers do. When people can make more money doing something mundane like working as a cashier at a dime store or flipping burgers and a fast-food joint, why would anyone want to make less money taking care of people which often involved very strenuous and disgusting tasks? There have been many discussions about this in the different councils I’m involved in. People also have brought up another great point—not necessarily in my situation at the moment, but, many times, caregivers also have lower economical status and often qualify to receive state benefits as well. There’s nothing wrong with this; however, those people often don’t want to work as many hours as they could in fear of not qualifying for things like BadgerCare. It’s very understandable, but where does that leave people like myself who literally rely on caregivers to survive? It’s a vicious cycle for everyone involved.

I’m hearing about a lot of agencies and nursing homes offering workers just outrageous bonuses to work. In fact, I have a worker who also works at a nursing home back in her home town, and she was telling me about how their paying workers a ridiculous amount to pick up shifts. I explained that while it’s awesome for her, it seems unfair to people in my situation because we literally can’t pay workers more than what the state allows (it’s illegal to pay people additional cash if you receive care through the state). Once people have worked with me for awhile, I try to show my appreciation by dinner every so often or something little like that. However, I understand that while it may be appreciated, it’s not enough to sustain workers.

I’m very blessed with amazing parents who will continue to fill in the gaps for me until they physically are no longer able to. While I have an awesome sister and brother-in-law who will help in the short term when that time comes, I’ll ultimately end up in a care facility. It’s mentally draining to constantly worry about cares. Between that and various medical issues, it has consumed my life in recent years. To the average person who doesn’t know anything about the “system,” when I talk about the caregiver shortage, they often can’t comprehend why it’s such an issue. Most people think that there are agencies that we can call who will automatically provide support. I find myself explaining unfortunately that’s not the case. When I explain the system a little, they are often flabbergasted how things really are.

I don’t have the solution to this massive issue. While I do think adequate pay and maybe some benefits would help, I don’t think that’s the whole issue either. People don’t want to work period. When you have an overall lack of enthusiasm to work and can make more money not working, how can you blame them? It’s going to come to a boiling point sooner than later, and something will be forced to change. I don’t know what that point is (and I’m scared to find out), but something has to give. All we can do is keep advocating and telling our stories about the crisis. It often seems pointless because it’s all we’ve been talking about for years now, but, eventually, something will have to change. I’m beyond ready to find out what that change is!

***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.

Stacy's Journal: Is Outer Space Accessible?

By Stacy Ellingen, 2021-12-14

Richard Branson. Jeff Bezos. Elan Musk. Michael Strahan. Those are just a couple of the famous people who took a trip into space recently. Yes, there have been other people who went who had significant connections to space, but these trips have been funded by well-known billionaires. I had a chance to watch news coverage of the most recent one where the famous football player and news broadcaster, Michael Strahan, went up to space.

Ever since I was young, I have had an interest in outer space. My junior year of high school, I did my multi genera research project on John Glenn, who was a famous astronaut. Watching the coverage of the space launch made me think about what if I wanted to go? Albeit a little scary at first, but I can’t imagine how cool it’d be to be totally weightless. What would happen to my muscles? Now, realistically, that’d probably never be possible because obviously I’m nowhere close to being a millionaire, but I was thinking about the principle of it—what the if a person with a disability could afford it and had the desire to go? I did a quick Google search and found out that it cost over $55 million to go to the space. That’s just for one person and I’m assuming it’s for only a few minutes like the recent trips have been. Right now, very few people in general could afford that, but, as more and more of these trips become reality, the cost will likely eventually decrease. There is already talk going around about a “space tourism industry.” Will people eventually vacation in space? It’s bizarre to think about, but it seems like it’s quickly becoming reality. This brings up a frequent question in the disability community--will it be accessible?

When Bezos went to space this past summer, a meme went around on social media saying something to the effect, “Another billionaire went to space today. If this is possible, why can’t people who use wheelchairs fly without having their wheelchairs wrecked? Why can’t air travel be inclusive? “That wasn’t the exact quote, but the point was that if regular civilians can go to space, we should be able to make air travel inclusive. As a person who has experienced having their wheelchair ruined by the airlines, I completely agree with the statement. A few years ago, I wrote a journal entry about how my chair was ruined on a trip to Vegas. Unfortunately, it happened on the way there, so it kind of wrecked the vacation for my parents and I. Since then, when I fly, I take my manual wheelchair which makes me dependent on others for almost everything.

In my opinion, there’s a bigger issue around this conundrum. Considering we’re in the 21st century, why shouldn’t everything be inclusive? People with disabilities are one of the largest minorities in the world. When inventing new things and opportunities, regardless of what they are, inclusivity should be a factor in development. Yes, I understand this would make things more expensive and complex, but it’s time. I think back to my entry about the Eagle Tower in Door County--that’s a perfect example. It was knocked down due to safety concerns, and, when it was rebuilt, it was made accessible. Did it take longer and cost a lot more? Absolutely, but now a lot more people can enjoy it.  

While the Americans with Disabilities Act and other laws have made a lot of things accessible, there is often a sense of frustration when people find out that things will take longer or cost more because they need to be made inclusive for everyone. As a person with a disability, knowing that people are frustrated because they have to wait longer or more money has to be spent to make something accessible, it saddens me. Am I not worth the wait or extra money? Now, of course, there are things that just can’t be made accessible. For those things, alternative options often can be made available. An example of this would be adaptive sports. They obviously aren’t the same as regular sports, but people with various limitations can experience what’s it’s like to play and compete.

Engineers are designing new airplanes and automobiles every day, why can’t we figure out how to get wheelchairs on planes? Yes, I understand it would take many years and billions of dollars to replace all the time airplanes, but, if we can send civilians to space, why can’t we figure out how to make wheelchair accessible cabins? Something doesn’t add up. While I understand the need and desire for extravagant recreational experiences, where does the need for accessibility fit in the priorities of the country? It’s definitely an interesting question to ponder. If we can send civilian tourists to space, we should be able to take flights in airplanes without our vital equipment being damaged. Unfortunately, I don’t foresee anything changing anytime soon. We, as a disability community, have to continue to make sure that we are seen and heard. That’s the only way changes are going to happen.

***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.

Stacy's Journal: Eagle Tower

By Stacy Ellingen, 2021-10-28

“Remember this because I won’t be able to do this again,” I vividly remember my dad saying as he carried me all the way up the Eagle Tower at Peninsula State Park in Door County when I was seven or eight years old. At the time, I certainly didn’t recognize or appreciate the beauty of the view from the top of the tower or how much work it was for my dad to carry me up and down it. Looking back at it now, I realize how hard it must have been, and, really, how unsafe it probably was for him to do that. As I’ve discussed in previous entries, my parents do everything they possibly can to make sure I get to experience as much as possible.

A few years ago, I started hearing about how the Eagle Tower was going to be redone. It had been closed for a while because it was deemed unsafe. It was eventually taken down. There were articles going around on social media about how a group called Friends of Peninsula State Park was trying to raise enough money to build an accessible tower. They raised over $750,000 towards the new tower and canopy. It was started in 2020 and opened in May 2021.

whole tower view.jpgThis summer, many of my friends who use wheelchairs posted pictures on Facebook of them going up the tower. All summer, my parents were trying to find a day to get me up there, but, due to busy schedules, we never could. Finally, a few weeks ago, I couldn’t find care coverage for a Saturday night and Sunday morning. My parents decided that would be a perfect time. Because it was peak time for colors in Door County, there wasn’t a hotel room to be found. I tried saying it’s ok – we’ll get there next year--but my parents weren’t going to take that. We ended up leaving Oshkosh early on a Saturday morning and driving up there. It ended up being six hours of traveling because we had to drive back the same day, but it was worth it! going up sho.jpg

When I first saw the tower, I was simply amazed by the scaffolding and ramp. scaffolding.jpgThe 850 foot ramp swerves up the 60 foot tower. What caught my attention when I first approached the ramp is the width of it. I don’t know the exact measurement, but it’s wide enough to fit two wheelchairs side-by-side on it. Of course, that’s not a likely scenario, but most ramps like that are usually pretty narrow. I was extremely pleased that I had no problem driving up, and people could walk on either side of me - - that usually never happens on a ramp. There are several bench cutouts on the ramp for people who need to sit and rest on the way up and down. What I also noticed is that there are several places where the wood railing is replaced with wire, so people in wheelchairs can see out below. I thought that was really neat because part of the experience is being able to see how high up you are, and, most of the time on things like that, railings or guardrails often prevent the view for those of us who can’t see over. The view from the top is just breathtaking. There are a couple of places at the top where it’s cut out and have only wire fencing, so people who use wheelchairs can see below. cutout.jpg The panoramic view is incredible!

donor wall.jpgAt the bottom of the tower, there is a wooden wall and each piece of wood has a name of someone who donated to the project on it. It’s really neat to see how many people donated to the project. My mom went into the clubhouse to get a park sticker when we first got there, and the guy told her that the tower is actually 15 feet shorter than the old one. It was almost as if he was disappointed about that. I did some research on the Internet and found out that they made it shorter because it’s the best height to see the view. at the top.jpg

I find it ironic that this new accessible tower is in Door County. Door County isn’t usually known for its accessibility. Many of the shops and restaurants are still inaccessible. I understand the smallness and daintiness of the places is often what makes them unique, but in my opinion, it’s time to make changes so that everyone can enjoy these places. Maybe the tower will influence owners to make necessary changes to their places so that everyone can enjoy them.

me at beginning.jpgIt’s really cool to experience something that you never thought would be possible, and know it was made possible due to generous people. In today’s world of so much doom and gloom, it’s refreshing to experience humanity first-hand. What a gift to be able to witness the beauty of humankind! going up showing length.jpg

***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.

When was the last time you really watched a person get into a swimming pool? Do we stare at girls dancing at a wedding? Do we watch when people do ordinary things like this? Typically not—unless it’s different. We are accustomed to seeing people do things a certain way. When a person does a task or activity different, we are interested. It’s not wrong--it’s human nature to want to watch someone do something in a different way. For people who have visible disabilities or health conditions, it sometimes feels like you’re in the spotlight anytime you go out in public.

In a journal entry a few years ago, I wrote about fitting in at various social events. Using a power wheelchair and having uncomfortable movements understandably draws attention to myself pretty much wherever I go. It’s just something I’ve learned to deal with. Usually, I do whatever I can not do make even more of a scene when I’m out. It doesn’t work too well most of the time, when I’m at a gathering with friends or family, I try my hardest to keep my movements under control and not make too much of a scene. As I explained in previous entries, though, when I try not to do something intentionally, my body doesn’t cooperate. In fact, it does the complete opposite - - the harder I mentally try, the more my body does the opposite. It’s part of Cerebral Palsy. Usually, I just “try not to try” and just ignore my body. I’m learning that it’s pretty much all I can do in those situations.

There is a different kind of attention when I try do something ordinary, but it causes a scene because I do it different. Let me try to explain. A few years ago, I was at a friend’s wedding. She had worked for me for a few years and we became friends. My mom went with me to the wedding. I didn’t know anyone but the bride, and I was the only one with a visible disability. Obviously, some of her family knew about me, but I didn’t know anyone else which was fine. I was just there to support my friend. My mom ended up running into some people she knew, so we sat at the reception with them. It was a nice time. However, the whole night, my mom kept urging me to get on the dance floor. I kept saying no. When we left, she said, “I really wish you would have danced. It warms people’s heart to watch you dance.” I tried to explain to her that’s exactly the reason I didn’t want to. I didn’t want to be a spectacle that night in front of people I didn’t know. At other weddings, yes, I’ll get out on the dance floor, but, it’s different around people who I know.

Another example is when I get in and out of swimming pools. I love to swim and it’s so good for my muscles. However, when I get in and out of pools, it’s a scene. My parents have a system down. It takes both of them to get me in and out. Getting in is easier than getting out. They get me out of my wheelchair, sit me on the edge of the pool, one of them holds me up while the other gets in the pool, and then they ease me into the pool. Getting out is even more of a scene. We sometimes use the lift if the pool has one to get out. Regardless, it’s something that draws attention to us. Normally, in hotels, I don’t care. Usually, we go to places that aren’t crowded, so there’s just a few people around the pool. I figure it’s worth making a scene if that means I can swim. My aunt and uncle have a pool at their house, and this summer we had a big family gathering for my grandma’s 90th birthday. All of our family came in from across the US, and we had a big party. On the second day, it was a pool party. We did family pictures as soon as everyone got there, and people were swimming all day. I wore my swimsuit, but I wasn’t sure I’d go in. After pictures, I was just about to go in because my sister and nephew were in, but then other people (besides family) started arriving. They were friends of my aunt, uncle, and cousins. I quickly changed my mind and didn’t go in. Even though nobody would have probably cared (and likely people would have offered to help), I didn’t want to draw more attention to myself. Does that sound conceited? Probably, but I knew it’d cause a scene.

Unfortunately, I’ll probably always have this issue. It’s just something I’ve learned to deal with. Most of the time, I have a choice whether or not I want to do the activity. It’s a fine line between wanting to experience or do something and feeling like you’re a spectacle. Everyone is different—some people care less about being watched while doing an activity in an unusual way, while others hate being the spectacle all the time. Most of the time, I don’t really mind people looking at me when I’m doing something different because I believe that’s part of advocacy—showing others what I can do despite my challenges. However, admittedly, sometimes I miss out on opportunities just because I don’t want it to be made into a scene. I feel like some things are just not worth being put on stage for.

***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.

“You’re so lucky to have a place to sit all of the time.” I’ve been told something to that effect more than once. I was told that I’m lucky because I never have to buy new shoes because I never wear out shoes since I don’t walk (which is completely false, I probably go through shoes faster than most people, but that’s beside the point). When people make statements like that, I usually just try to fake laugh it off or ignore it, but really on the inside it bugs me. While some people with disabilities find humor in this, I’m not one of those people--they’re much stronger than me and I give them kudos for being able to laugh it off. Let me be clear, I know people aren’t trying to be mean when they say things, but it irritates me that the thought even crosses their mind. Am I really lucky I have to sit all the time?  Don’t they know how lucky they are to be able to stand and walk… even if the conditions aren’t ideal?

My parents and I recently took a trip to Las Vegas. I absolutely love the city, and my parents really trying to get me out there every so often. When we booked our flight, things were looking much better with COVID. Unfortunately, things kind of went backwards lately, but we tried to be really careful. We brought my manual wheelchair because we weren’t going to take anything any chances with the airlines ruining my power chair. We’ve been to Vegas multiple times, and the one thing that struck us this time was the number of people who rented power scooters. There were noticeably more people using scooters out there. While I totally understand that there are hidden disabilities and health conditions that may require a mobility device, it was quite apparent that many people were using them as “toys.”  Multiple times, we witnessed people messing around and having races on them. We even saw couples trying to ride on each other’s lap. Yes, we did see some people who clearly needed mobility assistance, but there were a lot of people who appeared to be using them as toys. My parents got irritated because these people were taking up the elevators and clogging up the sidewalks. It irritated me because of the principle of it. I selfishly thought, “why the heck are you using one? Don’t you know how lucky you are to be able to walk?“

Another thing we noticed in Vegas was the number of people who brought their “service dog” everywhere. I’ve written about this before. I understand it’s a fine line because some people do benefit from emotional-support animals, but many people take advantage of being able to use that “excuse.”  While having some sort of a vest or identification that the animal wears would expose a person’s personal health issues, it would cut back on the number of animals being “used” as fake support animals. What irritates me is that people take advantage of many of the accommodations that are supposed to help those who really need them.

It goes the other way too—the example that comes to mind is that the lines in the Disney parks. I think the policy has changed now, but when my family went when my sister and I were kids, we were forced to go to the front of lines. While it’s a nice gesture for people with conditions that literally can’t wait in line or people who are terminally ill, we felt very awkward doing it. Why should I get special privileges? We were actually quite embarrassed.

Another example is a few years ago, my mom surprised the family by getting us four accessible tickets for a Green Bay Packer playoff game. She had only gotten them because it was a lottery for accessible tickets for that particular game. My sister and dad are the Packer fans, so I felt like she used my disability to get the tickets. Looking back, I realize it was pretty selfish of me to want to take that experience away from my dad and sister, but I was so mad at her. In the end, it ended up being a moot point because the Packers lost the game before.

There are some “perks” (as some people refer to them as) that I literally couldn’t live without. Long-term care supports are one of those. While I’d love to be able to be off all of the government benefits, that’s just physically not possible. Some people with disabilities can earn enough money to be completely independent and off the so-called system, and that’s awesome. As I unfortunately found out a few months ago, I can only physically do so much without my body flipping out. As frustrating as it is, I have to remind myself that at least I’m doing something to contribute to my needs.

I’m not fully independent in any aspect of life—I never will be. Do I wish I could be and not use any of the specialized equipment I rely on? Of course I do. However, I try my hardest to do what I can. When I see people “take advantage” of specialized equipment or say something irrational, it does affect me. I have to remind myself that they probably don’t realize what they’re doing or saying may be offensive. While I don’t see these situations changing anytime soon, educating people is important. Please take advantage of the abilities you do have. There is a magnitude of specialized technology and equipment to assist people who can’t do various things, but please understand that many people don’t have a choice whether or not to use those things!

***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.

Gold. Silver. Bronze. Those have been popular words on TV the last few weeks with the summer Olympics taking place in Japan. Yes, because of the pandemic, it’s a little different because no fans are allowed, but the games have brought some much-needed positive excitement to the world. From the many records broken, to the stunning upsets, to the inspiring stories, it’s been refreshing to hear so many positive news stories after over a year and a half of pretty rough times. The Olympics have also highlighted some pressing issues in today’s society.

As I write this, I can think of three different types of Olympics: The “regular” Olympics, the Paralympics, and Special Olympics. I can’t help but think of the movie Murderball when describing the difference between the Paralympics and Special Olympics. The movie is about wheelchair rugby and in the movie the athletes make a not-so-nice comparison between the Paralympics and Special Olympics. It was trying to illustrate that Paralympians and Special Olympians are very different. Often, there’s confusing between the two which can be very degrading for both parties. Admittedly, I don’t know much about Special Olympics, but they are games for people with mostly intellectual disabilities. From my understanding, the athletes train and compete like other athletes, but it’s more about giving the athletes the opportunities to participate just like everyone else. It’s about having the ability to show personal strengths. The competition isn’t as intense. Whereas, in the Paralympics, the competition is just as intense as it is in the regular Olympics and the athletes are considered elite.

In recent years, both Special Olympics and the Paralympics have received more media coverage. The Paralympics begin a few weeks after the regular Olympics end this month. The opening ceremony and a few of the events will be on tv. I watched the opening ceremony of the last Paralympics a few years ago, and it was cool because I actually knew some of the athletes from Whitewater. I recently looked at the roster for this year’s USA Men’s Wheelchair Basketball team and I realized I still know four or five of the players. In fact, I was talking with one of my caregivers about it and I was saying I couldn’t believe some of those guys are still playing—they were playing on the Whitewater team over 15 years ago.

Watching the Olympics makes me wonder if things were different, would I be athletic? Surely, I probably wouldn’t be an Olympian or anything, but I think I would have done some sports. In a previous entry a few years ago, I talked about my love for sports. I absolutely love watching them—especially football and basketball. As I discussed, besides trying a little recreational power soccer a few nights in college, I’ve never played a real sport. Could I have been in Special Olympics or played in a Miracle League (where kids with disabilities are paired with able-bodied buddies to play baseball)? Probably, but I didn’t. It wasn’t on my radar, and, as a kid, I wanted to fit in with my friends. My sister and brother-in-law are involved in myTEAM TRIUMPH. It’s where able-bodied athletes volunteer to help someone with a disability complete a race. The able-bodied people often pull the person with a disability in a bike cart or an inner tube (while swimming). I know my sister would love for me participate in a race, but, for me, I can’t bring myself to do this. Saying this will make me sound incredibly vain, but, as a fully intellectually capable person, I can’t imagine being put it the spotlight for something others did. It’s amazing my sister and brother-in-law are involved in this, but, unfortunately, I don’t see myself ever doing it.

Competition is good for everyone. It’s motivates us to become better at whatever we’re doing. However, as we’ve seen in this Olympics, the pressure to perform can lead to serious mental health issues. Simone Biles, who was supposed to the gold medal favorite in gymnastics, took herself out of two of the competitions citing mental health issues. As unfortunate as it was, it has brought so much awareness to the issue. Social media has blown up with posts about this. While there are some negative posts out there about how she left her team hanging, most of the posts I’ve seen have fully embraced and supported Simone for recognizing it and stepping away. For many people, including myself, seeing her step away made them realize that it’s ok not to be ok. Besides the pandemic, I think it’ll be the biggest thing remembered from this Olympics. It’s amazing to see how much impact one athlete can have on the world. 

Athletics give us great entertainment. Sports have a funny way of pushing people to their limit, but also bringing people together. They make people realize what they are capable of and how far they can go. They also help us realize that humans are humans, and nobody is perfect. Sports teach us what’s important in life!

***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.

Stacy's Journal: Living Life on the Clock

By Stacy Ellingen, 2021-06-28

Whether it’s waiting for ticket sales to open for a concert for your favorite band, waiting for the clock to turn midnight to celebrate your birthday, or another scenario, almost everyone has experienced watching the clock to turn a specific time for one reason or another. When we have to wait until an exact time for something, time often goes by really slowly. Regardless of rather it’s for a good or bad thing, people get anxious about waiting. Often, the same feeling occurs when people are under a certain time limit to complete a task. One often feels pressure or anxiety when being timed to complete tasks. For people with disabilities who need assistance with basic needs, this feeling just got amplified thanks to a new federal mandate.

For years, the words “Electronic Visit Verification” (EVV) have been floating around the disability community. It’s basically where in-home caregivers have to log in and out for each shift. To the average person, this doesn’t sound like a big issue. Employees have to sign in and out at lot of jobs, right? What is the problem with that? Well, let me try to explain.

In long-term care programs, participants usually get a certain amount of care hours based on annual assessments. There are different types of care hours people qualify for—like Personal Care, Supportive Home Care, and Respite Care. I have Personal Care and Supportive Home Care. I have a certain number of each that I’m allotted weekly/monthly. Some people can just use the hours on whims notice. In my situation, it’s best to have a standing schedule of care. I have the different hours divided up each day and it usually doesn’t vary too much. I’ve been hiring and scheduling all of my own caregivers for over five years now, and I’m really glad I’ve done it this way all along--especially with this new mandate. If you don’t use the hours, you lose them. Generally, you want to use all the hours you can, so you don’t risk having your amount cut due to lack of use. I’ve learned it’s much more difficult to increase your hours than it is to have them cut back.

For the past five years, I’ve had certain scheduled shift times. My workers would enter the shifts into the portal, submit it at the end of each time period, and then I would approve it. Since my shift times stay the same, it worked pretty well--everyone knew exactly what to put. When I started hearing about EVV a few years ago, I knew it’d be a big hassle, and I was right.

My Fiscal Employment Agency (FEA) chose not to use the software application that the state came out with. Instead, they had to get the software that they were going to use approved by the state. The Department of Health sent out a large packet of information about their system back in November which caused mass confusion. I think all of the FEAs and IRIS consultants got bombarded with questions by anxious and confused participants. At the time, my FEA told us to not worry about it and more information would be coming. For months, I had been hearing people who have other FEAs starting to use EVV. I thought it was a little weird my FEA seemed to be so far behind, but I certainly wasn’t going to question it. In January, I started seeing advertisements to sign up for training through the FEA. I signed up for a session, but as it turned out, they were doing it over the phone (instead of on the computer) at the time, so I couldn’t participate. I had my mom do the training, so she could fill me in. At the time, their software system hadn’t been approved, so the training was pretty useless. In May, I started receiving emails saying to look for information about EVV coming soon. I told my workers to start watching their inboxes for information about it. A few weeks ago, some of my workers and I received an email about how to set it up, but some of my workers didn’t receive it. The email was very vague and didn’t have a start date. I assumed more information would be coming, so I didn’t start. About a week or so ago, I received an email from the FEA asking why there has been no shifts logged in the EVV system. I replied saying that only a couple of my workers received an email and there wasn’t a start date. That got the ball rolling. They asked for email addresses for the people who didn’t get it, and said we should start as soon as possible. They explained that it is a “soft launch” meaning that the time sheets will still be used for payment while the kinks get worked out of this new system. Eventually, though, this will replace timesheets.

With the new EVV system, workers download an app on their phone to sign in/out of every shift. If a worker doesn’t have a smart phone or doesn’t want to download the app, there are other options to log in/out (such as a number to call or even a device the participant can request to time in/out). Luckily, my workers are young and tech savvy, so using the app isn’t a big deal. However, it’s a real pain having to log in/out at an exact time. I’ve always had a pretty lenient relationship with my workers. If we got done with everything I need done a few minutes early, I’d let them leave and chart the full shift on the timesheet; on the flip side, if I needed a few minutes more of assistance, they’d stay, but only put the regular amount of time on the timesheet. That all came to a screeching halt when we started EVV.

I now have five alarms set on my phone each day. Each one is a reminder to sign in or out of a shift. My night shift is split into two separate types of care, so, now, at 5:30 each night, we have to stop what we’re doing and the worker has to sign out of one shift and into another. It is ridiculous! Typical people don’t live “on the clock,” but that’s essentially what this is making people in my circumstances have to do. It makes me so angry! I understand that it’s meant to prevent fraud, but it’s also not fair to the participants. I have to literally keep my eye on the on time 24/7 now. At least, for now, the app just asks people to check the tasks for each shift rather than having to select tasks for specific minutes in the shift. If that ever happens, it’s going to be even more of a chaotic mess. Fingers crossed that doesn’t happen!

Fortunately, I’m in the IRIS program, so I don’t have to worry about location. Unlike other long-term care programs, participants in IRIS can receive cares outside of my home. Thank goodness! For those who are in other programs can only receive personal care in their home. The app does track location, but, as long as I’m with the worker (obviously), location shouldn’t matter.  I consider myself fortunate in that aspect.

Most people don’t live life on the clock, but that’s what many people like myself are being forced to do. I think it’s obvious that I’m not happy about this new mandate, but it is what it is. I have no choice but to embrace this new system, and figure out what is going to work best for me. Is it fair that I’m on the clock all day everyday? Absolutely not, but the reality is life isn’t fair for anyone!

***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.

Stacy's Journal: When Enough is Enough

By Stacy Ellingen, 2021-06-06

Ever wonder when enough is enough? Whether it’s referring to a person eating too much for dinner, a parent dealing with an unruly child, picking up overtime at work, or another scenario, almost everyone has had to say “enough is enough.” We all deal with stress and anxiety differently. Some people headaches, some feel the need to exercise more, others eat more. It varies person-to-person. Whatever people do to “de-stress” usually requires them to get away from the situation at-hand. There are many different ways to release stress. Ideally, whatever stress relief activity people use, once they do it, they can go back and continue handling the circumstances. Stress is part of life. We all have it. It’s part of life. People with disabilities are no different—in fact, in many ways, I feel like we have more stress than the average person.

If you’ve read my past entries, you probably know that kind of a go-getter by nature. When my parents told me that the insurance company deemed me “unemployable” at the age of four (without even meeting me), I knew I had to prove them wrong.  I’ve done that about four times in my life between mentoring, my different work experiences, and being a business owner where I’m independently contracted with InControl Wisconsin. When someone doubts my abilities, I like to prove them wrong over and over again. In early March, I was hired to do another part-time advocacy job by a different disability organization. It was very part-time, they were more than willing to accommodate my needs, and I absolutely loved the work I was doing. It was about double the hours I currently worked. It was all virtual and I thought I could easily handle doing both jobs. Boy, was I wrong. I lasted about two-and-a-half months before I made the difficult decision to resign. In that time, I had two trips to the ER, an emergency surgery, a week-long hospital stay, and countless trips to the doctor. During all of this, I was trying to do my best with keeping up with both positions all while trying to manage my caregivers, and just keeping up with normal life. I think part of the problem was that when I have things to do, I work nonstop until I get them finished. I don’t take time to relax until I have everything done. That’s just the way I am, so I was working on stuff nonstop for weeks on end without taking time for myself.

It was my last visit to the ER that made me realize I needed to slow down. I went in because my spasticity had been so bad for so many weeks that my neurosurgeon (who I saw earlier in the day) wanted me to get scans done because he thought maybe I had an infection or something. We were all trying to figure out why my spasticity was so bad. In the ER, they literally had to sedate me because my muscles were so bad. I had a full workup done and every single thing came back normal. Normal is a great thing, but we needed to figure out what was causing all of the issues. I slept for almost 18 hours straight due to the medication they gave me. The next day, when I was finally alert, my mom told me that everything came back fine. I then made the decision that I needed to step down from my new job. I know my parents were waiting for to come to that realization. They didn’t want to tell me that I should, but they wanted me to realize that I couldn’t handle that much.

I won’t sugarcoat it’s been difficult coming to terms with the fact that my body can’t handle very much stress. My mind wants to be able to do so much more, but my body says, “sorry, no way!”  I’m learning that I need to let my body guide me. I have said “no” to more things in the last few weeks then I ever have before. It’s certainly not easy, but my health has to take priority.

It’s more than just saying no to things. In my situation, it’s also about physically being comfortable. The other day, when my mom and I were on the way to another medical appointment, I told her about how I was planning to wear a dress with tennis shoes to our big 4th of July party. This won’t make any sense to most people, but when my feet are fully protected by wearing tennis shoes, my whole body is calmer. I have lots of dressy shoes and sandals I’ve worn to wedding and special occasions, but my body always is more tense when I wear them. I was telling mom how people will probably laugh at me at the party, but I don’t care—being comfortable is more important. She agreed.

Another example of enjoying life in the moment is getting what you want when you want it. I can’t go into financial details for obvious reasons, but I’m learning that I should get what I want and not wait for the “right time.” People with disabilities who receive government benefits are really limited financially. We can’t really save too much money (yes, I have an ABLE account, but it has so many stipulations that I have to be really careful); if we go over a certain amount in our account, we lose things like insurance and long-term care services. Many of us would never be able to afford to pay out of pocket for insurance and care services, so we have to very vigilante about our finances. I’m essentially learning that I need to spend money on things that I want rather than waiting for another time.

At age 36, do I feel like a 90-year-old? Yes, in so many ways. As I’ve said in many previous entries, Cerebral Palsy is considered a non-progressive condition; however, as we get older, our bodies seem to age faster than the average person. For me, slowing down and reducing my responsibilities has seemed to help me physically quite a bit. I still have problems with my spasticity from time to time, but I’m not stressed if I need to take the time to relax. I know that I have time to do what needs to be done. I don’t have to rush anything.

How do you know when enough is enough? That’s a good question. I’m still trying to figure that out. Personally, I’m learning that I have to let my body be my guide. If I start feeling too much stress (of any kind), my muscles will let me know. People need to listen to their body. Nobody else is going know when “enough is enough” for another person. Life is too short. Relax. Take time for yourself. Be comfortable. We only get one chance to live. Enjoy it!

***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.

Stacy's Journal: It's OK to Ask for Help

By Stacy Ellingen, 2021-05-03

When was the last time you thought about how much time it takes you to do a simple task? Like putting a Cheeto in your mouth? Or putting your clothes on for the day? Most people don’t even think about how long it takes them complete routine simple tasks. Simple tasks that humans do every day become second nature. It’s often only thought about when these routine tasks take longer to complete for whatever reason. When something takes longer to do than normal, frustration often sets in. For some people with disabilities, basic tasks often take longer to complete. It can vary day to day which creates more frustration. As I’ve said before, learning patience is a must when living with certain disabilities or health conditions.

Cerebral Palsy is considered non-degenerative which means that the actual condition does not get worse over time. As I’ve explained in previous entries, though, many people have found that secondary effects of the condition often appear as people age. Many of my friends with CP have found this to be true. The most frustrating thing is that none of us were expecting these issues. As kids, our parents weren’t told to expect more problems as we age.

I recently had another emergency gastrointestinal surgery. I’m fortunate to be able to know what’s happening and that I need to go to the emergency room. This was the fourth time it has happened in less than nine years. I spent a week in the hospital recovering and then another week or so at my parents. Fortunately, my parents were able to stay with me at the hospital to help with communication and cares. By now, we know the recovery routine pretty well.

However, this time has been a little different. My body hasn’t bounced back like it has in the past. While thankfully, the actual stomach issue has been resolved, my body is sort of playing games with me. My muscle spasticity has been way worse since the surgery. When my spasticity is really bad, my body freezes. I literally can’t move until the spasm passes, and this happens several times a day. We have no idea why suddenly it has increased. When it happens, it’s not only painful, but it’s also very frustrating. I have no idea when it’s going to happen. It has happened several times during meetings on Zoom. I just have to turn off my camera and do the best I can to continue to participate in the meeting. Thankfully, people who I work with are understanding and patient with me, but it’s incredibly frustrating.  

Due to this new issue, things also take me even longer to complete than before. I feed myself lunch everyday and I’ve noticed that it takes me much longer to eat than it once did. Same with typing--it’s taking me longer to accomplish things on the computer. My caregivers have noticed it too when they’re helping me with cares. When my muscles tense up, we have to stop what we’re doing and just wait. Fortunately, they’re all pretty patient and are good at taking the time I need.

I learned I need to have patience at an early age, but, admittedly, this has taken a toll on me mentally. Why is this happening to me? Will I ever catch a break? Is this my new normal? Questions such as these go through my head quite often lately. My poor mom gets the brunt of my frustration. We are working with doctors to try to figure out something that will help, but the truth is, there really isn’t a “cure all” for this. Unfortunately, it’s part of my condition and there are still many unknowns. At my post-op appointment, we questioned my surgeon about what could be done to prevent gastrointestinal issues from happening again. She told us that there is really nothing that can be done to prevent it. It’s just how my body is. She said that I have a “weird anatomy”,” and that there’s no way of knowing if/when it’ll happen again. Hearing that was discouraging. I told my mom, “I’ll probably end up dying from one of these gastrointestinal issues.” She didn’t know how to respond to that. She reminded me that it’s good that I’m able to tell when something is wrong and communicate that I need to go in. My surgeon emphasized that as well. Still, it’s a hard pill to swallow when your body is slowly declining at the age of 35, and there’s nothing you can do about it.

Let me be clear-- by no means am I looking for pity. I only share this to educate people. Obviously, I don’t hope anyone else is going through similar circumstances, but the reality is that people are. I want them to know that they’re not alone. May is Mental Health Awareness Month. It’s no secret that I’ve been in several “funks” from time to time. There are several different ways to deal with depression and anxiety. Some people see a therapist on a regular basis. Others take medication. Other people need in-patient treatment. There are several different options to help people deal with this. Personally, I use a combination of things. My mom is my sounding board. She is able to usually talk with me and get my mind in a better place. Sometimes, I talk with friends who I know have dealt with similar issues. Getting out and doing something social usually helps me a lot. I’m disclosing this in hopes of ending the stigma—several months ago, I talked to my doctor and started on a medication to kind of help me with anxiety and depression. I’m not proud to tell people that, but it’s life. I think it’s important to know that others need a little help. I finally got the courage to talk to my doctor after I talked with two of my friends who have similar issues. For me, the medication certainly doesn’t mask any of the thoughts or feelings I have, but I didn’t want it to. It does, however, seem to keep my mind a little bit calmer.

Mental Health is part of our overall well-being. Sometimes, life can be hard and unfair. We all have feelings of sadness and frustration sometimes. What’s important is how we deal with it. For me, when I’m having a rough time, my mom says, “remember, you’re doing the best you can.”  She’s right. I really encourage people who are having a hard time in any way to reach out to someone who can be trusted. It could be a neighbor, a friend, a coworker, a doctor… whoever that may be, share your feelings with them. It’s ok to ask for help.

***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.

Stacy's Journal: Just Who are Them?

By Stacy Ellingen, 2021-04-18

“Sticks and stones may break my bones, but words will never hurt me.” Many people hear that saying in life. Is it true? Absolutely not. Words hurt. In today’s world, I wonder what would happen if words caused physical harm. I think we would have even more problems than we already do. Unfortunately, discrimination is part of life in the world we live in. I believe everyone gets discriminated against at some point in life—it’s just a fact. Obviously, there are lots of different types of discrimination. People with disabilities often feel more discriminated against than the average person.

“I used to take care of them,” a lady recently said to my parents while we were sitting by the pool in Florida. I was taken back by her comment. Them? Am I really a them? I know the lady likely didn’t mean to say it in a negative way, but it came off as if I was a part of some cult or something. I’m not a “them” just because I have some limitations. My mom went into her “Mama Bear” mode right away and started explaining all I’ve accomplished. This is a frequent occurrence when people make inappropriate comments or ask awkward questions about me. My parents don’t put up with rude people. When the lady left, I asked my mom, “am I really a them?” She and dad then went into their spiel about ignorant people. We’ve had this discussion a million times, but it doesn’t get old—it helps me realize that many people just don’t understand disabilities. In a way, talking about it with my friends and family (who obviously understand) helps me cope with the negativity.

I’ve written entries in the past about how people treat people with disabilities. People can be extremely rude. I’d like to think that they don’t realize they’re being hurtful when they say things, but sometimes, it’s hard to believe that. Thankfully, I was too young to remember this, but, when I was a kid and still in a stroller, a lady came up to my mom in a department store and asked her why she didn’t just let me die. Seriously? Who says that? I don’t even know how my mom responded, but I bet she said something to the effect that “I’m sorry you feel that way and I’m sorry Stacy heard you ask me that. We are extremely grateful that we have her.” My mom still brings it up every once in a while, so I know it hurt her.

As I get older, I find myself wondering if it will ever stop. Will my nephew have to respond to those inappropriate comments about me? How will he react? I know my sister, brother-in-law, parents, and I will try to help him understand that people will stare, point, and say things because I’m different. My hope is that he will understand and became another one of the people who help me advocate and respond.

As I’ve said before, kids are totally different. When they point, stare, and say things, they do it out of curiosity. They are trying to learn about differences. When I see a little kid pointing and asking questions or saying something, the adult with them often pulls her/him away and tries to hush the child. I don’t like this. Depending who I’m with at the time, I often try to interact with the kid. It’s so important to educate kids and let them ask the questions, so as they get older, they know how to interact with people who are different than them.

I believe people with disabilities also have to make a conscious effort to educate people. We can’t expect people not to react negatively if they don’t know how to appropriately interact with us. Of course, in a perfect world, people should not interact with people with disabilities any differently, but we know that this world is far from perfect. As a person with a disability, I feel I have a responsibility to educate people who don’t understand or know how to treat people with disabilities.

In today’s day in age, disability discrimination has been put on the back burner. With everything going on in the world, I believe there are many other pressing issues to tackle at the moment. That’s not to say that disability discrimination/equality isn’t important. It’s just the media has many more pressing issues to cover. I’ve only discussed verbal discrimination in this entry, but there are many other types of discrimination that people with disabilities face. Housing, financial, and employment discrimination are also very prevalent in the disability community.

Will there ever be a day when the pronoun “them” will be just associated with a group of friends and that’s the only meaning? Unfortunately, I don’t see that day coming anytime soon. It’d be a very boring world if everyone was exact same. We have to continue to make an effort to be vigilant and sensitive to differences. I challenge each of you to reach out to someone who is different than you this week. Take five minutes to talk to him/her and learn something about them. You never know—it could result in a lifetime friendship!

***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.

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