Stacy Ellingen

2021 is finally here! With vaccines beginning to be administered, hope is on the horizon. There are many different factors to consider regarding the vaccine for COVID-19. With it being so quickly developed, is it safe to get? Are there long-term side effects we don’t know about yet? Who should be priority and what is the criteria that makes them so? Should employers be able to make it mandatory for employees? How long will it take to get enough people vaccinated so the world can return to some sense of normalcy? How long will the vaccine protect people? These are all questions circulating in today’s society. Where do people with disabilities fit into this discussion? That’s a good question. Like almost every minority, at least for myself, I feel like I’m at a higher risk even though I’ve already had it once.

In previous entries, I’ve discussed how careful my immediate family and I have been from the beginning. We wear masks everywhere we go and really limit our outings and gatherings. My nephew is over six months old and we still mask up when we’re around him. My sister works in the healthcare field, so she and her husband wear masks anytime they’re around anyone else. We knew I’d be at risk of getting it simply because I have caregivers come in. Sure enough, the first week of college classes, a worker was exposed in a class, caught it, and unknowingly brought it into my house. In turn, myself and two or three workers contracted it. Fortunately, my symptoms were very mild, but I ended up having to go to my parents for over two weeks because all of my workers were quarantined. Miraculously, somehow, my mom and dad didn’t get it (that’s still something weird about this virus—how can both of test negative when I was with them 24/7 for over a week? It doesn’t make any sense), but what if they caught it, and got really sick? What would have happened? Questions like these are what keep me up at night.  We just had another scare recently where a worker’s husband tested positive and the worker exposed me without realizing it. As a precaution, I went to my parents for a few days. After talking with my doctor, we found out it’d be extremely rare for me to catch it again, and I’m probably not even a carrier anymore. Again, there is still so much unknown about this virus that it’s hard to know what to do.

How should the vaccine be prioritized? Obviously, healthcare workers and first responders should take first priority. They’re risking their lives to help and protect others who may or may not take this virus seriously. After that, I’ve heard residents in long-term care facilities will be next. While I understand they're at higher risk because they live in a congregate setting, I guess I have sort of a hard time understanding this simply because they unfortunately don’t have the opportunity to leave the facility most of the time. That said, if it means that residents can finally have visitors, I totally understand why they’d be next. I’m just not sure that’s the case as of yet. After people in community living settings, I think it’ll go by a combination of age and health risk factors. Where will people with disabilities fall in this equation? That’s the million dollar question for many of us. In my opinion, it’s going to widely vary depending on individual circumstances. I haven’t talked to my primary physician about this yet, but I’ve talked to other doctors and they feel I may be a higher priority just based on having cerebral palsy. Since I’ve already had it, though, I’m not sure how that’ll factor into it. For those of us who rely on other people to take care of us, it’s an uneasy time. We have no choice but to be physically close to people. I’m hoping in-home caregivers will have some priority just like people who work in long-term care facilities did. Time will tell.

The other question is whether the vaccine should be mandatory or not. Even though, I personally believe that everyone should get the vaccine, I understand why it can’t be mandated. Especially with this being such a new vaccine, people have reservations. People have the right to refuse medical treatments. Many people don’t believe in any vaccines which is their right; however, I don’t know where the line is drawn between personal choice and public safety. That’s a hard question that I’m not going to get into. Therefore, as an IRIS participant, I can’t force my workers to get the vaccine. This is why it’s important that people who are in situations like myself (those who need assistance from other people to complete daily living skills) get the vaccine as soon as possible.

With a vaccine beginning to be administered, I feel hopeful. While understandably, some people are hesitant to get vaccinated, I’m more than ready. Even though we don’t know the long-term effects of it, my opinion is that we have something that will most likely keep us safe and make it so that we can gather freely again hopefully sooner than later. Yes, getting the vaccine is risk, but I’d rather take the risk than continue to live in isolation forever. 

***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.

                                                                                                                               


Waiting. Whether it’s waiting for a red light, waiting for a loved one to come home, waiting for a package to come in the mail, or waiting for something else, whether we like it or not, waiting is a part of life. Some people do it better than others, but, generally, people don’t enjoy waiting. The saying, “patience is a virtue” comes to mind when we discuss the challenges of waiting. In a past entry, I talked about how people with disabilities are generally pretty good at waiting because basically we many times we have no other choice than to since we depend on assistance from others. However, we aren’t the only ones who need to have patience. The people who we work with and interact with often need to have some patience as well.

Having severe physical limitations, things take much longer to complete most of the time. Things as simple as grasping a straw to take a sip of water or hitting a button to open the door can take me a lot longer than the average person. With the type of cerebral palsy I have, when I’m under any sort of pressure to do something, my body freezes. When my brain tells my muscles to do something under pressure, it’s like they lock up. It’s not only frustrating for me, but it’s also frustrating for people who help and interact with me.

My mom, dad, sister and close friends understand this pretty well and know not to rush me most of the time. However, like everyone else, they occasionally get impatient and get frustrated with me. They know it’s part of my disability and that I’m trying my best, but, sometimes, understandably it’s frustrating to wait for me to do the simplest of things. They get irritated with me, and, often, want to just quick do whatever the task is for me. Sometimes, that isn’t possible though. For example, when I’m talking to them using my communication app on my phone, they often try to guess what I’m trying to say before I’m finished typing it. Now, others who use communication devices absolutely hate when people do this; however, I personally don’t mind. If they guess wrong, I just continue typing. If they guess right, we can just move on with the conversation faster.

It’s frustrating when others close to me don’t understand this. I remember one family Christmas a few years ago, I was trying to talk to a family member about something, and the person got up and walked away while I was trying to talk to them. I realize the person did this because they didn’t realize I was trying to talk with them, but that is so frustrating. People who don’t realize that often things take me longer, don’t know to wait for me. 

Sometimes, even though it’d be much quicker to have someone help me, there are things I like doing independently. This is the case for many people with disabilities. While we appreciate the help, sometimes, it’s gratifying to be able to do things by ourselves. This example is funny, but it demonstrates this point well. For me, I’m able to physically use a tissue to blow my nose myself. As weird as that sounds, you have to understand the skill it takes to grab a tissue and hold it up to your nose yourself when you have limited fine motor skills. Would it be easier and quicker to have someone hold the tissue for me? Absolutely, but it’s something I can do independently. Other people with similar circumstances use opening a door as an example. Would it be faster if someone else opened it for you? Sure, but independence is such an important thing.

Over the last few years, I’ve seen many doctors for various reasons. One thing I’ve noticed is that for whatever reason doctors seems to be patient with me. Most of them wait for me to communicate, and usually don’t look to my mom for what I’m trying to say. I’m impressed by this. Maybe it’s because they know me well enough to know to wait. It’s nice—I really appreciate it. I wish others would follow.

I fully admit, I lose my patience with myself and others from time to time. It’s human nature. Living with a disability has taught me lots of things, but patience is one of the biggest things. In my situation, I literally have to be patient with my body. If I try to rush things, it’ll likely end up taking me significantly longer. People who get to know me learn this pretty quick most of the time. People who don’t know me well get frustrated waiting for me to do things. While I understand, unfortunately, I can’t change that. It’s something I deal with on a daily basis, and I’ve learned to try my best, and accept that some people will never understand why things take me longer. Patience is truly a virtue, and, while some have more than others, waiting is something everyone has to do to some extent. All the time—but especially during the holiday season this year—remember people are doing the best they can. Be patient with others. Take the time to talk to people. Try not to rush people. Life is too short!

***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: Thankful


By Stacy Ellingen, 2020-11-04

Can you believe Thanksgiving is in just a few weeks? Where has this year gone? It’s no secret that 2020 will be a year people won’t soon forget. As the holiday season approaches, many people often take time to reflect on the year that has gone by. No doubt that this year was different than we all could have imagined. While most of the issues were undesired, many people found lots of silver linings. In a time where the world is kind of chaotic, there’s a lot of things to be thankful for.  As a person with a significant disability, each Thanksgiving I try to take a few minutes to reflect on the year. Many times, it’s easy to get caught up in the busyness of the holidays, and forget what’s really important. For people with disabilities, it’s so important to reflect on the positives in our lives.

As I begin to think about the year that has gone by, I’m amazed by all that has happened. For starters, in January, I was having so many care problems. I began the process of switching to Family Care in hopes it’d be easier. As it turned out, that wasn’t the case. It was good to learn how it works, but it wasn’t going to work for my current situation. It was very disappointing to find out that there is no real good care program for people like myself. I’m still shocked by this, but it just confirms more advocacy is needed. Timing was impeccable in March when my parents and I decided to start in IRIS. All this was happening right when the pandemic hit.

Everything was shut down in the beginning of March. Most of my caregivers went back to their hometowns because the colleges were shutdown. I’m fortunate that I was able to move in with my parents for three months. If they weren’t able to take care of me, I would have ended up in a nursing facility.  As much as I complained about being at their house on their schedule, I’m very thankful that I was able to stay with them.

When we realized that the pandemic wasn’t going anywhere anytime soon, my mom and I came up with different care shift schedule to try. We interviewed and hired several new workers. I’m very shocked by how well things have been going. This has been probably the best four or five month stretch we’ve had in years. Now, I know that after the holidays, we’ll have to hire some new people because a few of my current workers are moving on, but it gives me hope that this will continue to be doable.

In June, I became an aunt for the first time. As hard as it was emotionally for me, words can’t describe how amazing my nephew is. He brings so much joy to the family. I’m so thankful that I’ll be able to watch him grow up and be part of his life.

I haven’t shared anything about this because I didn’t want people to feel bad, but in September, I had COVID – 19. It ran through most of my workers and I. I had to go to my parents for about three weeks. Thankfully, my symptoms were very mild, and somehow, neither of my parents got it. Coincidently, during that time, I ended up in the hospital with a gastrointestinal issue, but, thankfully, I didn’t need surgery this time.

As weird as this sounds, I’m very thankful that so much has gone virtual this year. As I’ve discussed in previous entries, for me, not having to worry about transportation or cares, I’m able to attend many more events and meetings than I otherwise would have.  Like everyone else, I miss seeing people in-person, but, with everything being virtual, I have more opportunities to participate in things.

The key word is thankful. With so much going on in the world, sometimes it’s hard to see the positives in life. I’m incredibly thankful for the life I have. Things could be so much worse. It’s because of the overwhelming support from my amazing friends and family that I’m able to be as successful as I am. Unfortunately, I know everyone does not have that support. It’s sad to think about and hear stories about people not having that kind of support. Do I find myself still being down and wishing things were different? Of course, I do. However, in those times I have to remember what I have and what I’ve been able to accomplish.

This Thanksgiving, I challenge each of you to take five minutes and reflect on the good things that happened this year. Yes, there were a lot of unpleasant things that occurred, but I’m willing to bet if we truly think about it, the good outweigh the bad.  I believe it’s true - - when bad things happen, it brings out the good in people. This year is the perfect example of it. We need to remember to be thankful for what we have. Happy Thanksgiving, everyone. I’m thankful for what each of you do for the disability community.

***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: The Desire to be a Mother


By Stacy Ellingen, 2020-10-06

“I think he already knows I’m different,” I said to my mom as I was playing with my then almost three-month-old nephew as she was holding him in her lap. I know the statement caught her off guard because she told my sister what I said later that day. Normally, my friends and family know that if there’s a big event that happened, I’ll write about it in the next month’s journal entry. I was fully expecting to write about becoming an aunt in my July journal entry, but that didn’t happen.

It’s commonly known that little most little girls dream of becoming a mother. They play with baby dolls and pretend to be a mommy. I was no different. I had many dolls and I enjoyed pretending to be a mommy. Obviously, as I grew up, I realized that the becoming a mother wasn’t as easy as it once seemed. It wasn’t until my younger cousins and best friends started getting married and having babies that I realized becoming a mom probably isn’t in the cards for me. My love for teaching and little kids makes that reality even a harder pill to swallow.  Personally, I think it’s one of the hardest parts about having a physical disability.

When my sister got married, I knew she and her husband probably would eventually have kids. On a Saturday morning last November, she texted me, “I have an idea of what you can get me for Christmas.” Not thinking anything of it, I casually texted back, “Great. What?”  She sent me Amazon link to the book, What to Expect When You’re Expecting. Of course, I texted back congratulations right away and asked when she was due. After the news set in, I’d be lying if I said I wasn’t sad. Don’t get me wrong, I was over the moon for my sister and her husband, but selfishly, I was feeling sorry for myself.

The holidays were right around the corner, and I knew she would announce it to our extended family. They announced it to a small group of people at Thanksgiving. For a few seconds I had to compose myself. Again, very selfishly, it’s not the easiest thing to witness everyone super excited over something you desperately desire, but know will likely never happen to you. I tried to hide my tears as much as possible. Having said that, though, my sister and parents understand why things like these are emotionally challenging for me. That’s part of the reason why my sister told the other side of the family before we got together for Christmas. My sister sacrificed the excitement of being able to tell people in-person to make it easier on me. I feel awful she does that with so many things, but I truly appreciated that one.

As I have talked about in previous entries, I lived with my parents the first three months of the pandemic. Understandably, my mom was beyond excited to become a grandma. Her excitement was overwhelming at times. Sometimes, all I could do was go in another room. I couldn’t help but think that if circumstances were different, I would have had her first grandchild. That said, my mom continues to be the only person I can talk to about how I feel. It was very hard for her because she was so very excited, but, yet, she knew I was having a hard time.  I feel bad for her because she has to see so many situations from both sides.

My first nephew was born in mid-June.  My brother-in-law texted his sister and I sharing the exciting news. My mom got to finally send the text to the extended family that she had been waiting to do announcing the birth of her first grandchild. Admittedly, that text got to me. As happy and excited as I was for my sister, I couldn’t help but wonder if I’d be a mom if things were different. Due to the pandemic, nobody could visit them in the hospital. My parents went down and saw him the day after they got home, and my parents took me down to see them the next weekend. I was so happy that I was living back in my apartment by then, my parents could have that first visit alone. When I went to visit, I tried to prepare myself because I knew it’d be kind of challenging for me emotionally, but I desperately wanted to be excited for my sister.

I’ve been lucky to see my nephew four or five times since he has been born. Each time, I recline my wheelchair back and my sister sets him on my lap multiple times. In the beginning, we used a bopsee pillow to help support him, but now he’s big enough that he can lay on my arm pretty good. I know he will grow up knowing about my disability because my sister and brother-in-law will talk to him about it. Will there be a time period where he’s scared of me because I’m different? Likely. It happens with most little kids, but we’ll work through it.

There was like a 10-day time period right around the birth of my nephew that six of my friends announced their pregnancy on Facebook. It was unbelievable! With my emotions already spiked, seeing that didn’t help. Again, I’m so incredibly happy for all of them; it’s just hard knowing I’ll likely never get a chance to experience that. I admit, those were some tough weeks which is why I decided to wait to write about this topic.

The feeling of selfishness makes a person feel even worse in situations such as these. I feel bad really for feeling sad about other people’s joy. It’s an awful feeling. However, I’m slowly beginning to realize it’s an unavoidable part of life. I will always have the yearning to be a mother. That’s part of being “normal” enough to have that desire. Do I still feel sad when I see friends and family enjoying life with their children? Absolutely. I don’t think that feeling will ever go away. I’m slowly working on ways to try to deal with it.

When my sister heard what I told my mom that day, her response was, “that may be true, but you know what? He’ll grow up knowing you, so, to him, you won’t be different.” If that doesn’t sum up the meaning of family, I don’t know what does!

***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: The Right to Privacy


By Stacy Ellingen, 2020-08-31

Most adults have some degree of privacy.  Growing up, parents usually teach kids what should be kept private and what’s okay to share with others.  Parents often gradually give their children more and more privacy as they grow up.  From very basic things early on, such as using the restroom by herself/himself, to more complex things as they grow up, like dating, children are taught the concept of privacy.  When we become adults, we decide our own level of privacy.  When people find her/his significant other, they often share private things with them.  Privacy is a human right.  In many scenarios, it keeps our dignity as people.  For people with disabilities, having any degree of privacy often is nearly impossible.

As a pretty avid disability advocate, I’m generally a pretty open person.  Since I believe part of my purpose in life is to educate others on what people with disabilities can do, I share my personal experiences, thoughts, and emotions with others in these journal entries, videos on the YouTube channel, media interviews, presentations, and other avenues.  It’s my way of feeling like I’m helping others.  While being open is part of my personality, I think having a significant physical disability has forced me to be open. Let me explain.

As I’ve explained in several of my previous journal entries, I need physical assistance with all of my basic needs.  I need somebody to literally undress me, lather me up and rinse me in the shower, and get me dressed again every day.  Every time I use the restroom, somebody needs to pull my pants down, clean me up after I go, and then pull my pants back up. I share these examples not to invoke any sort of pity, but rather to demonstrate how little privacy somebody with significant physical limitations may have. Obviously, I don’t really have other options in these circumstances, and I’ve, in essence, “gotten used to it.”

Physical body privacy isn’t the only sort of privacy people with disabilities often lack.  Recently, I ran into a situation where a care worker quit because she read text messages on my phone between my mom and I talking about her.  Now, yes, we were wrong to be talking about her (I was complaining she was lazy and always causing issues), but she had no business reading my messages.  It wasn’t like I was texting right in front of her either; she had to have gone into my phone and read them when I was out of my chair (my phone is mounted on my chair).  Yes, I realize I could have a passcode enabled to open my phone, but that brings up more issues (if I had to enter a passcode every time I use my phone, things would take me even longer to do).  What really irritated me about this situation is that the worker obviously knew I use my phone and specifically text messaging as my main means of communication with my parents, and she felt she had the right to go in and read my messages.  Really?  I guess maybe I put too much trust in people.  Again, my mom and I acknowledge we were wrong to be talking about her, but it’s tough when I rely texting to communicate.

Another thing people with disabilities often have little to no privacy with is finances.  Many rely on government assistance to live.  When you receive government financial assistance, one has to report any income and assets she/he has. There is a review done regularly for eligibility for Supplemental Security Income (SSI).  I live in subsidized housing, and I have to do an annual recertification where I have to provide all of my financial information.  The information is used to determine what my rent is for the year.  While I understand why this needs to be done, it can be a little daunting.  Providing the information year after year is not only time consuming, but it can also mess with emotions.  While I’m not ashamed that I need government assistance, it’s not something I’m proud of or want to be reminded of either.

Having little to no privacy in life isn’t fun, but it’s something I’ve learned to live with.  When you rely on others for so much physically, you try to savor any dignity you can. It can be as simple as being able to pick up a Kleenex to blow my own nose.  As silly as that sounds, using a tissue myself takes a lot of concentration and effort, but I do it because I’m able to. I realize I’m fortunate that I’m living in my own apartment. While I gripe about having limited privacy, people who live in group homes or facilities have even less. 

Privacy is one of the few things that’s hard to modify.  It’s something that we, as people with disabilities, have to try to figure out how to persevere on an individual basis.  For myself, I realize that giving up some privacy also means that I’m able to be as independent as possible.  That sounds like a weird analogy, but by having people come in to help me, I’m able to live independently. That’s what I try to remember when I have issues with privacy.  It’s part of this unique journey I’m on called 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: Choices


By Stacy Ellingen, 2020-08-02

From a young age, most people are given choices and are encouraged to try new things.  To begin with, parents give children very basic choices such as the choice between juice and water.  As kids get older, they began to learn consequences and benefits of their choices.  Parents often encourage them to try new things and then help them make decisions.  Making decisions is a huge part of life.  As adults, our choices often have significant (both positive and negative) repercussions.  Some choices are very easy while others are almost impossible to make.  For all people, having choice is a critical part of life; for people with disabilities, having choice and being able to self-direct often comes with many obstacles.

I’ve been out of college over 11 years now, but each August, I find myself reflecting on one of the biggest decisions I’ve ever made.  It was a decision I made 17 years ago. At the time, I had no idea of how big of a decision it was.  I just had graduated high school and was preparing it to go off to college.  Sure, I had some extra things to get ready, but I was getting ready for college just like all of my friends were.  It didn’t hit me that I was about to take a huge leap of faith and move away and be on my own.  I was just doing the “normal” thing.  Now, I realize what a life-changing decision that was. I had no idea what I was getting myself into which, looking back, was probably a really good thing.  I know my parents—especially my dad—would have rather had me start out at UW-Fond du Lac, but, nevertheless, they supported and encouraged me to try it at UW-Whitewater.  It was the best decision I’ve ever made.  Yes, I’m very proud I earned my Bachelor of Arts degree, but, beyond that and perhaps more importantly, I proved to myself and others that I could live on my own.  Like I’ve said in past entries, this was a huge relief to my parents knowing I could physically manage (with the right supports) without them. I often wonder where I’d be today if I hadn’t taken that giant step.  Where would I be? Would I be living on my own?  Would I still be living with my parents? What would I be doing?  It’s honestly a scary thought.  There’s no doubt in my mind that that one decision has shaped and will continue to shape my life forever!

Most choices obviously aren’t as monumental.  Recently, I found myself wrestling with the decision whether or not to resign from one of the state disability councils I was on.  I had been on this particular council for three years, and while I enjoyed my time on it, I never really felt a real connection to the subject matter.  The role of this council was more about funding allocations and policy for a certain type of organizations which provide services for people with disabilities rather than actually creating change that directly improves lives.  I tried my best to learn and become interested in the council, but my interest just wasn’t there.  When I was appointed, I filled someone’s spot who left in the middle of their term and then I started my own term.  Originally, when it became clear that I wasn’t passionate about this, my plan was to finish out my two-year term and just not apply for a second term.  My term would have ended next July; however, the council began updating its policies and there was talk of having terms being three years each (instead of two).  That’s when I really started questioning whether I should resign.  It was hard because I’m friends with some of the council members and I knew they’d be disappointed, but I knew it was best to resign because I wasn’t fully invested in it.  I knew it wasn’t right to take up a spot on the council when I had these feelings, so ultimately, I decided to resign.  Those weren’t pleasant emails to send, but I feel it was the right decision.

Care is another area where having choice is crucial for many people with disabilities. When you rely on caregivers to help you live life, you have to have some choice about who comes into your home and when.  Although it’s often denied, some long-term-care programs don’t allow for much choice.  Some people with disabilities need assistance in  making decisions about finance and care; while others are capable of self-directing everything.  As you know from reading my past entries, I’m a participant of the IRIS Program which allows me to self-direct every aspect of my life.  Not only do I have choice of how to spend my budget, but I also can choose who works for me.  That’s a huge plus of being in IRIS.  When I had care agencies in the past, if I didn’t get along with a worker, I’d have to talk to management, and, unless it was an extreme safety situation, I’d have to deal with it and continue with the person.  Now, although I try my best to make things work and get along with my aides, I can choose to terminate a person if things just don’t work out.

Making decisions and having choice is part of life.  We make hundreds (or probably thousands) of choices on a daily basis.  We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it 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: How Far is Too Far?


By Stacy Ellingen, 2020-07-01

How far is too far? That’s a loaded question in this day and age. With the ongoing pandemic colliding with the outbursts from the equity movement, 2020 will be read about in history books for years to come. Many people feel like the country is in shambles. People have different opinions about the two situations which creates tension everywhere. Different beliefs even among families are causing more unease during this unprecedented time in the world.

I’ll be the first to admit, I’m a pretty conservative person—I always have been. On most things, I listen to the experts and follow the advice of professionals. My immediate family is the same way, but I also think living with a disability has made me extra strict on some things. That’s why it was unusual that I wasn’t worried when COVID was first talked about back in late February. My parents were worried about it, but I didn’t think it was going to amount to anything. It wasn’t until everything starting shutting down in early March that I began to worry. States began implementing stay-at-home orders, and the number of cases began to skyrocket. News stories about hospitals prioritizing ventilators and refusing to treat people with disabilities began popping up in my Facebook groups.  What would happen if I would get it? It’s a question that still lingers in my mind today.

I’ve noticed that many people have eased up on the guidelines such as mask-wearing, social distancing, and attending large group gatherings. While I understand we all are sick and tired of living in a bubble for so long, the virus is still very prevalent across the country. It’s very hard to understand this when people are asymptomatic, but yet, are carriers of the virus. This is where the concept of being accountable for one’s own actions is so important. A person may not be overly concerned about contracting the virus herself/himself, but the thing that the person needs to remember is that she/he can spread it to others without even realizing it.

Obviously, nobody intentionally means to spread the virus to other people, but when people choose not to follow the guidelines, it often seems like people don’t care about others. This can be very frustrating and cause tension among friends and family. To those of us who are concerned about getting the virus, it’s hard to understand why some people aren’t taking the recommended precautions. The saying, “if you don’t feel the need to do it for yourself, do it for others” comes to mind during times like this.

Taking responsibility for one’s own actions carries into the equity movement as well. I personally believe that every single person on earth is racist. Most of the time it’s unintentional and we don’t even realize it. As a society, I feel we need to do a better job of understanding different cultures. Regardless of what culture it is--ethnicity, sexual orientation, disability, economic status, or something else—we need to do a better job of understanding people.

There have been many posts on social media about comparing ethnicity inequality to disability inequality--some agreeing; others disagreeing. While I agree that there are some similarities, I don’t think now is the time to compare. I don’t think it’s right to draw attention away from the ethnicity inequality crisis. Yes, even though the 30th anniversary of the Americans with Disabilities Act (ADA) is this month, there are still many inequalities for people with disabilities; however, we need to remember that we’re not the only culture still facing barriers.

Both of these issues boil down to having respect for one another. Yes, people have the right to have their opinions of what’s wrong and right and what people should and shouldn’t do, but we need to be respectful. How far is too far? That’s a rhetorical question. How far should the government go to enforce the pandemic guidelines? How far should law enforcement go to ensure equality?  How far does society have to go to have equality for all people?  Those are some questions that we may be pondering for years. Unfortunately, I don’t believe either situation will be resolved anytime in the near future. It’s my belief that both situations may take many years to resolve. My hope is that people will be more respectful of others as we create this new normal. Not only will it help to resolve the issues at hand, it will bring us closer together! 

***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: Navigating the Broken System


By Stacy Ellingen, 2020-05-28

What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go?  These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35?  My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.

Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.

I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.

Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.

A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceeded with putting together a plan for me.

Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.

The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world long enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.

After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being.  I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.

In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.

However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve 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. 

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