Whether it’s getting your foot in the door for a company you want to work at, getting an important question answered, gathering information for a critical decision one has to make, getting in touch with the right person about something important, or getting something that you really need approved by the state, most people have benefited from having connections at some point in their lives. Connections can come from all different facets of one’s life. When people are fortunate enough to happen upon the right people in various aspects of their life, it often turns out to help them in ways they didn’t foresee. Having connections helps everyone find their way through life. People with disabilities are no different. In fact, for many different reasons such as preconceptions, isolation, and the lack of resources, we likely rely on connections more than most people. For people with disabilities, the power of networking and finding connections is crucial in our lives.

In previous entries, I’ve explained that, ironically, my mom was a special education teacher before I was even born. She was teaching for several years before I was even born. Some call it fate...I don’t think it’s coincidence that I came along and had some challenges. Obviously, I was too young to realize it for quite some time, but it was a huge blessing to our family. Not that mom had all of the answers, but she had some knowledge of disability and knew of the resources available to help us navigate through the system to get what I needed to be successful. She was aware of our rights and she knew what to advocate for. She knew the process of IEP meetings and what services I needed. Albeit, it got a little awkward when she became a Program Support Teacher (where she reviewed IEP paperwork and attended meetings for students in different programs) and then had to switch roles and be the parent during some of my meetings that got heated (I feel like every kid with significant needs has at least one or two intense meetings during their school years). The team did a good job of understanding she needed to be a parent in those situations, though. 

I don’t even remember how this happened, but my sophomore year of high school, we began looking at UW-Whitewater. I believe that I got a brochure in the mail about a camp they put on for people who use augmentative alternative communication devices. For various reasons, I never ended up going to the camp, but, through one of my groups on the Internet, I connected with the organizer of the camp. He was a student at Whitewater and had very similar needs. I talked with him via email, and his hometown was only 20 minutes away from where we lived. My mom and I ended up going to his house to meet with him. I was amazed to learn that someone like me could go away to college and succeed. The summer before my junior year, my mom and I went to see the campus of UW-Whitewater. for the first time. Obviously, it was way too early to do a formal visit, but I wanted to see if it was something I’d be interested in. We met with my friend again—this time at his apartment. After that visit, I knew that was where I wanted to go. It was because of a by chance connection on the Internet that I found an amazing opportunity that ultimately shaped the rest of my life.

When I moved to Whitewater, I literally knew two people . One was the organizer of the camp and the other was a girl I met during my pre-enrollment day (Whitewater has students with disabilities come to campus a few months before to meet with people at the Center for Students with Disabilities). The girl I met also had very similar needs. She graciously gave me her contact info and we began talking. In the months prior to moving down there, I asked her all sorts of questions about college. Looking back, there’s no doubt that I bugged her with pretty silly questions, but she was good about answering them. As luck would have it, that summer we learned that we’d be neighbors in the dorm for my freshman year . She took me under her wing that year and showed me the ropes. As I met more people, I obviously made a lot more connections. Like everyone else, having connections helped me navigate college life.

About my third year of college, my mom forwarded me and email she received from her work about an online mentoring opportunity for students with disabilities.  It was through Midwest Alliance which was associated with UW-Madison. I ended up mentoring high school students with disabilities for about five years, but that isn’t the point I want to make. The manager of the program really connected with me and ended up asking me to be on a panel for a session at the Transition Conference. Being able to attend that conference literally changed my life because I was introduced to the world of disability advocacy. At the conference, I was able to attend sessions about employment for people with disabilities which happened to be perfect timing because at the time I was struggling with DVR to find employment. I ended up connecting with the presenters of one of the sessions, and, although in a very roundabout way, that connection led me to becoming self-employed and working with the organizations I do. It’s really incredible to think about all of the connections it took for me to be where I am today. It’s simply amazing!

I’ve been incredibly fortunate to be able to make even more connections that have personally benefited me through the advocacy work I’m involved in. Knowing the people to contact when I have a question or need something has been so helpful. I’ll just share one recent example.  Our wheelchair accessible van was totaled in mid-February. It was literally my only means of transportation. Right away, I posted on Facebook asking if anyone knew of any funding resources for van modifications. Much to my surprise, I learned that I could ask for a one-time expense through IRIS. My awesome consultant had never done one before, so she and her supervisor worked together to get the process started literally right away. They found out that I needed to have an accessibility evaluation done. They contacted my Independent Living Center to set it up. The Independent Living Center knows me as I’ve done some work with them over the years. They understood the urgency of the matter and they were able to squeeze me very quickly and do the assessment. They were amazing and we had the report early the next morning. It was submitted to the state. I waited a few days and then I reached out to someone who works in DHS and has presented many times to a state council that I’m on. He was able to connect me with the person who does one-time expenses, and later that day we received word that it was approved! The multiple connections that made it happen so quickly is remarkable.

As a person who has a significant physical disability that affects my speech, to say I’m proud of all the connections I’ve made would be a huge understatement. I realize that it takes some extra time and effort to communicate with me and get to know me. I’ve been beyond lucky to have so many incredible people who have done just that. Without all those connections, I wouldn’t be able to do anything. The connections have led to opportunities I never dreamed of. Everyone has different connections that influence their path in life. I’m incredibly fortunate to have so many connections that have led me to where I am today!

***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.

“Stranger danger” is something parents teach their kids starting at a young age.  Don’t talk to people who you don’t know.  Never go with somebody you don’t know.  Always tell an adult you know if a stranger tries to do something to you.  The list goes on.  Parents do this to try to protect their child.  As kids grow up, they learn who are the people they can trust, and they develop a sense of people who may not be good to trust.  As adults, we know right from wrong and, in most cases, have a pretty keen sense of who we can and cannot trust.  Until we get to know a person, we often put a guard up when we’re around her/him.  We’re careful about what we say and do.  Depending on the circumstances, gaining trust can be challenging.  For people with disabilities, trusting people is often a unique challenge.

As I’ve explained in many previous entries, I rely on assistance from caregivers to complete all of my basic needs every single day.  Simply put, I depend on assistance from people to live.  Having to so heavily rely on people, I often find myself constantly “on guard.” When you need assistance doing tasks you need to literally survive, you have no choice but to put a tremendous amount of trust in others.  I didn’t realize it at the time because I was so wrapped up in the idea of going to college, but starting at Whitewater was when I first began really putting a lot of trust in people besides my family and friends.  Not only did I have to trust that the care agency was going to find people to fill all of my shifts, I had to put complete trust in the workers who were assisting me (and when I first started, I didn’t even meet the person until their first shift).  Granted, there were a few mishaps along the way, but, thinking back, I don’t remember having too many trust issues with people while I was in Whitewater.  A big reason was because most of my workers were college students as well, so it was like I was just hanging out with friends.

After graduating college, I moved back in with my parents.  As I’ve explained in previous entries, during that time, we tried having different care agencies come in.  While it was uncomfortable for my parents to have people come into their home and do my cares, they understood it was what needed to happen.  This was when we first realized what a struggle finding care was going to be.  Not only did we have lots of no shows, but we also had some sketchy people coming in.  I remember one time, a worker was making me dinner, and I saw her literally grab some lettuce from the bowl and eat it!  Obviously, it was just lettuce and we had plenty of it, but it was more the point that she not only felt It was ok to sneak food, but she also thought she could eat while feeding me. If she felt it was ok to take food, what else would she have taken?  There were some other issues with this person, so I had to tell the agency they couldn’t send her anymore.  That’s just one example.

When I moved to Oshkosh, I started with a new agency.  When you have new caregivers, your trust level always starts at zero.  I’m always on guard until I get to know a person.  I fortunately had pretty good luck with the first agency I had in Oshkosh. I’m not sure whether or not they did background checks, but the workers were pretty decent.  If I had a problem with a with a worker, the agency would try to work with the person and I to resolve the issue, but, ultimately, if it wasn’t working out, the agency would take the worker off my schedule.

After five years with that agency, I had to switch to a different agency.  This was truly when my trust radar heightened.  I don’t know how to say this without sounding judgmental, but, after working with caregivers for so many years, I have an uncanny way of reading people.  Within five minutes of meeting a caregiver, I can usually tell if the person is trustworthy or not.  With the agency I switched to, none of the workers were what I consider trustworthy.  However, because those workers were the only people the agency had to help me, I had no choice but to have them help me.  Low and behold, my instincts were right.  In the eight months I was with the agency, I had theft happen more than one. Being the curious person I am, I began looking the workers up on CCAP, and I was shocked what I found.  The agency couldn’t have done background checks.  Yet, these people were in my apartment with me alone.  After eight months, I had had enough and switched to Self-Directed Personal Care through IRIS.  The week before I left the agency, one of the workers who had the majority of my shift came in and told me that she had been just released from jail!  That confirmed that I made the right decision to leave the agency.

Doing Self-Directed Personal Care, I’m able to hire the people I want.  Before even interviewing people, I look each applicant up on CCAP to make sure they would pass the background check.  When we interview people, I usually have a weird sense of whether or not the person is going to work out.  However, unless there are multiple red flags during the interview, I usually have them fill out the paperwork and hire them.  Given the caregiver shortage, I can’t be too picky.  Unfortunately, many times after a training shift, people end up not working out.  The training is hands-on so the person can experience what working with me physically entails.  Another worker is here during the training to explain everything to the person. 

While the veteran worker is explaining everything to the new person, I’m evaluating the person.  I have to think about whether or not I’m going to feel safe and comfortable with the person alone.  I should preface this by saying that the first couple of shifts are rough—they always are.  However, during the training, I have to determine I’m going to be safe with the person.  As hard as it is, I try to be very open-minded when people train.  I have to remember that it’s just as uncomfortable for them as it is for me.  I have to really try to read the person and decide if it’s going to work.

Most of the time, I usually try to give people the benefit of the doubt.  However, sometimes, you have to trust your gut.  I found myself in this situation a few weeks a few weeks ago.  The person was one of the few applicants who applied and passed the background check.  We interviewed her and had her fill out the paperwork.  Again, looking back, I should have trusted my instincts, but it’s hard because I desperately need workers.  After she was approved, she came to train and her true colors came out.  She didn’t listen to anything the worker or I were saying. She kept wanting to leave on a break when I was in vulnerable situations (for example, she wanted to leave when I was on the toilet which would have been a disaster if she were alone and decided to leave—I have no way of opening the door or using the phone when I’m in the bathroom).  She also randomly left for 45 minutes and had no idea where she was.  Those coupled with some other pretty major red flags made me really question what to do.  I desperately need workers, but is it worth jeopardizing my safety and causing me stress of wondering what would happen on her first shift alone?  In this case, it wasn’t.  I decided it was best to let her go.

Trusting caregivers to assist you with your personal needs is an interesting life many people with disabilities live. As vulnerable as I am not only needing assistance to complete my basic needs, but also being nonverbal, I have to put an enormous amount of trust in people who I don’t know very well.  Over the years, I’ve learned what to let go and also when I need to take action to protect myself.  Sometimes, it’s exhausting being “on guard” all of the time, but it’s what I have to do to remain as independent as possible! 

***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.

Being a starter on a sports team.  Standing up in a wedding.  Getting a promotion at work.  Being asked to speak at a big event.  What do these things have in common?  Things such as these make an individual feel valued.  Being valued is a psychological need of every single person on this earth.  There are a million different ways to make a person feel valued, and what makes an individual feel that way varies from person-to-person.  Feeling valued, wanted, and needed is essential to everybody.  In today’s society, it’s especially important that people feel valued.  People who have disabilities or health conditions are no different; we need and deserve to feel valued just like everybody else. In fact, sometimes, I believe people who have any sort of limitation have the need to feel more valued because, the truth is, society still doesn’t view us as equal. 

“I know you’re busy, but I’d like to come visit with Parker a day next week.  We won’t stay long.  What day would work best?,” my sister recently texted me.  Nearing the end of her maternity leave with my second nephew and wanting to visit my parents as well, she was trying to find a day to drive up.  Having talked with my parents, they told her how busy I’ve recently become.  After looking at my calendar and texting her back with the few days and times that’d work, I was talking with my mom and I said, “it’s weird that people have to schedule around my stuff. It’s usually vice versa.” What I mean by this is that I’m not used to being this busy.

As I’ve discussed in past entries, I’ve learned the hard way that my body can handle so much.  A few years ago, I took on another very part-time job doing very similar things I do for InControl Wisconsin.  People had reached out to me and encouraged me to apply.  The fact that people thought that I had the right skills and would bring value to the organization meant so much to me.  However, as I explained, a few months into the job, I ended up having emergency surgery.  After doing my best to continue working while I recovered, I discovered that my body couldn’t handle it.  Much to my dismay, after many doctor and hospital visits, I ended up resigning from the position. People totally understood, but it was really hard on me because I knew that people valued me and wanted me to do it.

That was nearly two years ago.  Knock-on-wood, my health has vastly improved and I’ve been on a really good streak.  Because of that, I’ve been able to participate in more activities and take on more responsibilities. I’m not sure of the reason, but it seems like in the past month or so, I’ve been fortunate to have been asked to participate in several different advocacy activities. With almost all of these opportunities, people reached out to me and asked me to participate in the particular activity because they thought I’d add value to the project.  Due to timing, I had to say no to one or two of the things, but I’ve been able to do most of the opportunities.

Having people reach out to me because they think I bring value to something is an unexplainable feeling.  Although, the perception of persons with disabilities has vastly improved, I still constantly feel the need to prove myself.  As I’ve said before, being in a wheelchair, having involuntary movements, and being nonverbal, I know people make assumptions.  I get it—I make them too.  We all do.  It’s human nature to.  Admittedly, knowing this, makes me self-conscious and I find myself always trying to show people that, despite my physical challenges, I can accomplish things and be successful.

Knowing that people value who I am and what I do greatly boosts my confidence.  It does for everyone, but, for people who have blatant stereotypes attached to them, being wanted and needed means a little more. Personally, as I’ve shared before, when I get discouraged or depressed because things aren’t going well or I can’t do something, my mom reminds me of all that I’ve accomplished and of all the people who value me.  Honestly, depending on the situation, often I shrug it off because she’s my mom and she has to say those things; however, deep down, it helps to be reminded.

Being valued greatly improves one’s self-worth.  Everybody benefits from getting a boost of confidence every once in a while. Have you made somebody feel valued recently?  My challenge for you is to make a friend, family member, or colleague feel valued today.  By doing so, there’s a strong possibility that you’ll feel more valued as well! 

***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.

$1.35 billon. That’s the amount of the recent Mega Millions jackpot. It has been all over the news because it has been awhile since anybody has won the jackpot.  It has brought up the question: what would you do with a billion dollars?  Obviously, everybody has a different answer to the question and there is no right or wrong answer.  Responses to this question widely vary.  While some people dream really big and have extravagant ideas, others are more conservative and think strategically.  It’s an interesting question for everyone to ponder.  For people with disabilities or those who rely on government programs, the thought of suddenly having that much money is almost daunting.

“It wouldn’t really be beneficial to me if I won the jackpot, “ I said to my parents a few years ago when one of the lottery games had an enormous jackpot.  My dad disagreed and said yes it would.  Since my parents and I always have the topic of my care on our minds, my dad explained that I could pay people decently to take care of me.  We could hire and pay people decent wages to stay with me around the clock (while I don’t need 24/7 care right now, I’m realizing more and more how nice it’d be to have someone around to help me with things all the time).  I agree, but I don’t think winning the lottery would solve all my care troubles.

What would I do with one billon dollars (ok, about 474 million after taxes)?  That’s a very good question.  It’s interesting to think about because while, yes, almost everything in my life would change, my needs wouldn’t.  I’d still need caregivers to assist me with all my daily needs, I’d still need accessible housing of some sort, I’d still need medical professionals and other specialists to help me with my medical and equipment needs...the list goes on and on.  Would I still be able to receive the services I need?  Obviously and rightfully so, I’d be off all government assistance, but how would that work logically?  Would I be kicked out of my income-based apartment right away? What would happen with all of my insurance things?  Having so many needs, would I even be able to get private insurance?  I’d be able to buy all the equipment, but would I still qualify for assistive technology support?

Now, I realize that even thinking about this is pretty silly—especially since I’ve never bought a lottery ticket—but, what is the first thing I’d do after winning the lottery?  After contacting my immediate family (and probably going out for a nice dinner to celebrate), calling and meeting with a lawyer and financial advisor, I’d begin notifying government entities to try to figure out how to move forward. Next, I’d have to figure out a place to live.  I don’t think there are too many accessible millionaire homes readily availability in this country, so I’d probably find a big condo in a big city and have it renovated.  Then, assuming I’d be off my long-term care support, I’d have to figure out how I was going to do my care.  Since I wouldn’t be limited by insurance, I’d probably seek out a nice home care (believe it or not, some do exist—it’s just that only accept certain insurance or private pay) to set up care.  I’d buy an accessible van and hire and insure drivers to drive me everywhere.  I’d have to figure out health insurance.  Due to having a significant pre-existing condition, finding insurance maybe challenging, but I’d be able to afford a hefty insurance plan.

What would I do?  Would I continue working?  Probably not—at least not for pay.  Would I continue to advocate?  I can’t imagine that I wouldn’t because it’s who I am.  After ensuring my family and I were set for life, I think I’d start donating my money.  No idea how this would be possible, but I think I’d figure out a way to donate money to direct care workers.

It’s impossible to fathom having that much money.  To most people, one billion isn’t really even a realistic number.  Suddenly having that much money would drastically change anybody’s life.  Persons with disabilities are no different; however, we might have some extra things to take into consideration. Being financially stable would definitely make life easier, but it likely wouldn’t solve all our problems. In some ways in may in fact create new ones.  While the odds of winning a big lottery jackpot are extraordinarily low, it’s fun to daydream about what life would be like as a billionaire! 

***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.

What’s your name? What’s your date of birth?  Please state your Social Security number.  Questions such as these are commonly asked when people are setting up appointments, participating in important personal financial meetings, or completing other personal business.  Most adults are able to answer these basic questions without even thinking about it.  In this day in age, we have to make sure it’s a legitimate source we’re giving our personal information to, but, generally speaking, if it’s a credible source, people are able to verbally say their personal information when asked.  People with disabilities and health conditions frequently have to provide personal information on a regular basis because it’s required in order to receive the services and supports they need to live a successful life.

“Please state your date of birth and Social security number,“ a lady from the Social security Administration said to me on a recent call to fill out the application for a benefit I’m going to soon qualify for.  My parents were on the call too—in fact, my parents setup the call and were going to do it for me because we thought we had setup my mom as a representative for me so she could speak on my behalf (due to my communication barriers).  It turned out that wasn’t the case.  My dad called me on his phone, put me on speakerphone, and my mom put the lady on her phone on speakerphone so that we could hear each other. 

After calling me, my parents thought that the lady would be able to ask me a simple yes/no question such as, “do you give your mom consent to speak on your behalf?” She eventually did ask that, but first she needed me to state my date of birth and Social Security number.  My parents tried explaining think I use a communication app and type everything out—at this point, I was typing something out on my communication app to see if she could hear it.  She could, so my parents explained that I could type out my birth date and Social Security number—it’d just take awhile.  The lady agreed to wait while I typed them out.  After that, she allowed me to give my mom consent to help answer the questions.

The application for this particular benefit was absolutely ridiculous!  Not only did it ask for all of my financial information, it asked about all of my health history and capabilities. My parents were able to answer most of the questions and I chimed in with my communication app when needed. It took an hour to complete the application.  It would have taken a lot longer if my parents hadn’t been able to help.

As I’ve discussed in previous entries, answering questions and having to tell people about your condition and limitations over and over isn’t easy--especially in this scenario where somewhere in the system there should be most of the information from previous benefit applications I’ve done.  While I understand some health conditions change frequently, cerebral palsy doesn’t really change too much. People don’t like rehashing what happened to them or what they can’t do.  It adds another layer to it when you need assistance completing the interview (yes, theoretically I could have answered each question by typing it out on my phone; however, there’s no way a person at Social Security would have time to wait—it’d literally take a full day to do).  Thankfully, my parents are able and willing to help me with things like this, but I’m sure it isn’t easy for them either to explain my circumstances—again, we try not to dwell on my limitations.

In an ideal world, applications such as this would be able to be completed digitally.  People would be able to fill it out on their own, do electronic signatures, and be able to communicate through an online portal if clarification is needed.  It’ll be awhile, but I think things will become even more digitized.  The need to answer those seemingly degrading questions about my circumstances will always be a part of my life, but I’m hopeful that as things become more digital, the need to verbally state personal information will decrease.  For some people, having things become more digital has been an inconvenience; however, for people like myself, it has been amazing—I can’t wait for more opportunities to be available digitally! 

***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.

Packing boxes. Cooking dinner. Studying for an exam. Stretching before a race. Researching an item before you purchase it. There are millions of ways that people prepare for different things. Many times, we don’t even realize we do it—it’s habit. Some people feel the need to prepare for things more than others. Some people can just wing things and have them come off seamlessly. Not always, but usually preparedness and organization go hand-in-hand. Most of the time, if someone is an organized person, they also feel the need to be prepared.

“I won’t agree to do this many things again,” I said to my mom in early September as I was preparing for the Self-Determination Conference. She laughed and shook her head because she knows that’s not true. She knows how much I absolutely love doing presentations and talking with others. Like in many years past, I was asked to participate in many different things at the conference this year. It started in June or July. People sporadically began reaching out to me asking if I would like to do different things. I always say yes, but there’s a caveat—I need to know what I need to present on as soon as possible. While people do their best to get me the information in a reasonable amount of time, it’s usually not an ideal length of time for me. While I understand that most people can kind of wing speeches and presentations without putting an enormous amount of time in it, that’s not the case for me.

As I’ve explained in previous entries, I use an app on my phone called Proloque2Go to communicate. I’ll be honest—I don’t use it right. I never have used communication devices the “correct” way. I’ve never been a fan of using symbols and sequences to communicate. I’ve always preferred to type everything out that I want to say. I believe it’s not only faster, but it’s also a much more accurate way of communicating—rather than using preprogrammed phrases, I type out exactly what I want to say. Having said that, typing everything out does take some time. For spontaneously communicating, it’s usually fine because the person who I’m talking with usually know to wait. However, for long presentations, obviously typing everything out spontaneously, wouldn’t work. It’d take way too long, and I wouldn’t be able to cover hardly any of the information that I needed to. To solve this conundrum, when I have presentations, meetings, or anything that requires immediate response (that has to be semi lengthy responses), I preprogram things on to buttons. 

Now, when I say preprogram, most people have no idea what that entails. Before I explain how I do it, I have to tell you that the way I do it is probably very unconventional, but I’ve found it’s what works best for me. When I first learn that I have a presentation or something, I immediately ask what I’m presenting about or for an agenda (if it’s a meeting). I then begin typing what I want to say out on a Word document on my computer using my eye gaze system. Depending on how long of a presentation it is, this often takes days. A 30-minute presentation is about seven pages typed just to give you an idea. Once I have the first draft typed out, I copy all of it into an email and email it to myself. I then create a page in Proloque2Go for the specific event. I then start creating buttons on the page. I go back and forth between Proloque2Go and the email app on my phone—I use my double-jointed thumb to select and copy each paragraph from the email and paste it in Proloque2Go. Each paragraph is a separate button and, depending on what type of presentation it is, I label each button. I then have to go into options for every single button, and select “speak immediately” (the default option is to have the text displayed in the display box in the app and that would add more things to push while I’m presenting). In addition to programming buttons for each paragraph, I put a blank button between each button that has content. I do this because I’m apted to hit the wrong button if they’re right next to each other, so I put blank buttons in as spacers to help me be more accurate. While I don’t have to label or change the options for blank buttons, I still have to program a space for the button in order for a blank spot to appear.

After I get all of the paragraphs programmed, I then have to play each button to make sure it sounds right. Many times, I miss a word or something isn’t pronounced right on the app (for example, in order to have it say my last name, Ellingen, right, I have to spell it ell in jen). When that happens, I have to go into the specific button, copy the text, paste it into the Notes app, correct whatever it is, re copy the corrected text, and paste it back into the button in Proloque2Go. The process continues until each and every button sounds right. Depending If it’s a long presentation, I label the buttons using the alphabet. After I’m done programming the speech, using the Word document I originally created, I label each paragraph with the correlating letter of the button. I print out the labeled document and put it in the binder, so while I’m presenting, I follow it and know which letter I’m on.

You may see why I like to be prepared. I actually have no choice. I have to in order to be able to do many things. I had 138 buttons programmed with content for this year’s conference which meant, because of the spacer buttons, I programmed over 300 buttons total! It was a lot this year. Ideally, I would have had more time to prepare, but I understand that when you’re collaborating with people, things can’t happen as fast as you’d like. It was a pretty stressful few weeks, but I managed to get everything done.

While I would love to be able to just wing a presentation or a meeting, I can’t. Luckily, for me, I’m an overly organized person. As I’ve discussed in previous entries, I don’t procrastinate on anything. I have to be almost overly prepared for everything in life—it’s just who I am. Most tasks take me at least twice as long to complete, so time is a crucial component in my life. I have to consider the extra time I need in all aspects of life and try to be as prepared as I can for whatever life has in store!

***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 a car breaks down, people get it towed to a repair shop and have it fixed. If it’s going to take a few days to get it fixed, people usually have the option of getting a loaner vehicle to use. When your furnace doesn’t fire on a cold winter morning, you call a repair company and they often can come fix it within hours. For the most part, if something isn’t working, people are now used to getting it fixed or finding a solution within at least a few days. Generally, people don’t have to wait weeks or months for a solution—that is, unless you’re someone with a disability. As I’ve said before, for many people who have different abilities, “wait” should be our middle name.

In previous entries, I’ve talked about how I wait for everything from getting up in the morning, to eating and using the restroom, to going to bed at night. Waiting is a major part of my life. There is a different kind of waiting that a lot of people with similar circumstances do that the general population doesn’t even realize. The wait for services or approvals. I’ve briefly touched on how it takes many months for needed equipment to be approved through Medicaid. In most instances for Durable Medical Equipment, if it’s a new need, the approval process is generally pretty quick because the person needs the piece of equipment likely due to a recent change in condition. However, if it’s a replacement piece of equipment, it often takes many months due to needing very specific justification and documentation. This is often the case with repairs and adjustments to existing equipment as well. If the piece of equipment is not functional for the person to use without repairs or adjustments, the DME provider usually tries to find a loaner or similar solution for the person to make-do until approvals come through. Many times, the make-do solution isn’t ideal for the person. This happened to me several years ago when my wheelchair stopped working while I was waiting for approvals for a new chair. Many times, people keep their old chair as backup for when something happens to their current one, but, unfortunately, my old one had stopped working. The chair was in the shop five or six times, but they couldn’t figure out what was going on with it. Eventually, they gave me a loaner. Fortunately, they had a similar power wheelchair sitting in the shop and they were able to jerry rig it to make it functional for me, but it was less than ideal. As I explained in last month’s entry, power wheelchairs are usually pretty customized, and, as great as my Assistive Technology Professional is, you can only customize a loaner to a certain extent. I ended using the loaner chair six or seven months until the new chair was approved, ordered and delivered.

Durable Medical Equipment isn’t the only thing that people with disabilities often have a wait for. For those of us who need specialized technology equipment to help us access the computer, there is sometimes several hoops to jump through and takes months to get the equipment you need. I’ve done an entry about my eye gaze system that I use to type on my computer. It’s much faster than typing on an adapted keyboard. I have had it for about three years now. My actual computer is about five years old. Low and behold, both the eye gaze and the computer recently started acting up. Of course, it happens when I’m busy preparing presentations for the Self-Determination Conference. Unfortunately, I can’t just go out and buy a new computer like most people do. Since I have so much specialized technology equipment I use, I need an assistive technology specialist to help me figure out what I need and to help me set it up. One of the only ways to get an Assistive Technology evaluation done is to go through the Department of Vocational Rehabilitation, DVR. Obviously, I use my computer for work, so DVR should hopefully be able to help me get an evaluation through a vendor.

The process of re-enrolling in DVR is pretty extensive. First, I had to reapply online which is a long list of questions you answer. The application asks all sorts of questions about your history and condition. Once you submit that, an intake person calls you and sets up a meeting. At the meeting, the person basically goes over the application with you and has you sign release of information forms to obtain medical records from your doctors. Once they gather your records, you’re then assigned a counselor. You then have to answer another series of questions about your employment history and capabilities. If you’re looking for employment, it makes total sense, but, in my situation where I already am happily employed and not looking for more work, these questions seem pretty pointless. After answering all of the questions, you have to have another meeting with your counselor to development your employment plan. Again, for people looking for employment, this process makes sense. However, for people in my situation who are just needing support and services in order to be able to continue working at their current job, it seems a little mundane. After you have your plan, you have to wait for DVR to find a vendor that will do the service. Depending on the vendor and service, there’s usually a lengthy waiting list. In this instance, once I finally have the evaluation, I’ll likely have to wait for the vendor to submit a report and recommendations to DVR and then I’ll have to wait to see what they approve. Then, it’ll take time to order and receive the equipment. Finally, I’ll likely have to wait for the assistive technology specialist to have time to come set everything up. Remember—all of this is just so I can get updated computer.

Meanwhile, while I wait for all this to happen, I try to make do with what I have and really hope that my computer holds on a little longer. My eye gaze system is going in and out—it works great for one day and then it doesn’t work at all for a few days in a row. When it randomly does work, I try my best to get as much typing down as possible (this journal entry is a perfect example—I’m typing this over a week before it’ll be posted because the eye gaze decided to work for a few hours). It’s just so much faster for me to type using it as opposed to my adapted keyboard.

As much as I’d love to just be able to buy new equipment or call a repair shop to have it fixed, there’s often so much more that goes into specialized equipment that many people with disabilities rely on. Sometimes, it gets frustrating having to jump through countless hoops and wait months for things that make life easier. Unfortunately, I don’t see many processes changing anytime soon. Waiting is incredibly hard, but, I have to say, it makes the time when you do finally get the proper equipment, much sweeter!

***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.

Adjusting the steering wheel in a vehicle. Getting a dress or tuxedo fitted for a wedding you‘re in. Adjusting the height of an office chair. Lowering the rail on a baby crib. Reclining or straightening a seat in a car. Raising or lowering shelves in a closet. What do all these things have in common? They are adjusted to fit needs of an individual. People adjust things to meet their needs all the time. While most of the time, adjustments are so minor that people don’t even realize that they’re making the change, some adjustments can have more of an impact. For many people with physical disabilities, making adjustments is a major part of our lives.

As I’ve explained in many of my previous entries, durable medical equipment became part of my life at a very young age. From strollers, to wheelchairs, to standing frames, to shower/commode chairs, I’ve had lots of different equipment over the years. Each time I need a new piece of equipment, most times I have to be evaluated by a physical therapist. Based on their evaluation, they make recommendations and justifications to the insurance company. When I was younger and receiving therapy regularly, it made sense because the therapist knew how my body worked because they had worked with me for a long time. Many times, therapists recommend things based off “proper” positioning. In other words, they make suggestions that would help people sit the “right way.”  This was the case especially when I young.

With my type of cerebral palsy, if my body is forced into a certain position, it will fight it hardcore. It’s been that way all of my life—it’s just how my body works. For years and years, therapists insisted on things like foot straps to hold my feet on foot pedals. Each time my feet were strapped down, not only would I loose fine motor abilities because my body was fighting so hard against the straps, I’d often push so hard against the straps and foot pedals, they’d break. This happened so frequently when I was a kid. I got so mad at therapists because they kept strapping my feet down. I understand they were doing it for my own good trying to get my posture as straight as possible to prevent complications later, but it, in my mind, it wasn’t worth it.

Another example was when I got a new wheelchair when I was in college. We had to work with a new Assistive Technology Professional (that’s what they call the people who sell DME now) Because the people we worked with before had left.  We still had a therapist who had worked with me for several years, so he was able to help with the evaluation. Well, long story short, this ATP had it set in her mind that I had to have this very customized seating system. I had to sit in this machine that took imprints of my buttocks and she insisted that I needed a pummel (hump) between my legs to prevent them from crossing. Let’s just say, that was my worst chair ever! The pummel didn’t prevent my legs from crossing, and it actually caused me more problems. The seating ended up being just awful and didn’t support my body. Needless to say, we were very happy when that ATP left!

The wheelchair I got after that one was a much better experience. I worked with a new ATP, and, although we had to work with a physical therapist who had never worked with me before (because by that time, therapy had stopped being covered by insurance), they both seemed to finally understand that function was more important than proper posture. Both of them actually listened to me and understood that being able to function to my fullest ability was more important than preserving proper body mechanics at this stage in my life. It was so nice to finally have people who didn’t push my body into ways that just didn’t work. No, my spine wasn’t straight and my legs were rotated in, but you know what? I could continue to do as much as possible independently, and that was what was important to me!

I just got a new wheelchair a few weeks ago. Back in February or March, I needed some minor repairs done on my old one, and, to my surprise, my ATP said he thought it was time for a new wheelchair. I only had had my wheelchair for about seven years. I had heard that Medicaid only pays for one every 10 years or so. He explained that the parts needed to fix my chair were starting to be discontinued, and the he thought he could write a justification that’d be approved by Medicaid based on my needs. Again, we met with another therapist who hadn’t worked with me before, but it worked out even better this time because my ATP had gotten to know my body over the years and he worked with the therapist to write the justification.

Medicaid approved almost everything they recommended this time—even the elevate feature. I picked out the color of the fenders (purple this time!) and it was ordered. The joystick was back ordered, so, after a few weeks, the company decided to send an upgraded one (it has flashers, headlights, and turn signals—it’s truly like a vehicle). My ATP assembled it and then made an appointment for me to come in. From previous chairs, we know that wheelchair appointments take awhile when getting a new one. The ATP has to have me in the chair and make adjustments according to my body and preferences. Again, we were all on the same page this time—it’s all about function and comfort rather than proper positioning.

We were at the wheelchair place for over five-and-a-half hours this time. Many of the adjustments and adaptations were unconventional. For example, while I don’t like my feet strapped to the footplate, I do need something really strong attached to the footplate that I can push my feet on in order to push myself back in the chair. It sounds really weird and it’s hard to explain, but it’s just one of the unique things I need. On my old chair, my dad took a piece of piping and bolted it onto the footplate. The ATP couldn’t find pieces like that anywhere anymore, so, what he ended up doing is taking two armrest pieces from an old scooter they had in the back, bolted them together, and then bolted it onto the footplate. It works great for me! Unconventional? Yes, but oh so functional!

My wheelchair is just one example of where, especially as I get older, functionality is way more important than the proper or customary ways. I’m learning this is true in almost every aspect of my life. From wearing tennis shoes to weddings, to having people break the binding on books so the book stays open for me (yes, I do that), to making sure caregivers don’t zip the zip lock baggies when they make my lunch so I can grab and dump the things onto the table, there are hundreds of unconventional things I do so I can be as independent as possible! As people say, “if it works, that’s all that matters!”  That statement couldn’t be truer in my 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.

“Don’t give up…don’t ever give up.” That was the famous quote from Jim Valvano’s famous speech at the ESPYs in March of 1993. He was a famous college basketball player and later coach who was accepting the Arthur Ashe Courage and Humanitarian Award.  Jim was courageously battling cancer. Variations of that quote have been used in many different ways in the years since his speech. It’s likely that everyone has been told “not to give up” on more than one occasion in life. Whether it’s for something as simple as a child scoring in a sports game or something as serious as a person with a terminal illness fighting to survive, hearing people say those encouraging words usually ignites a spark of encouragement in the person. The motto, “never give up,” is often heard in the disability community. For many people like myself, it’s a motto we choose to live by.

In an entry a few years ago, I wrote about how comparing our lives is human nature. It’s something we all do without even realizing it. While often comparing is a reaction to jealousy of someone’s circumstances or good fortune, it sometimes can be reflective and can make people realize how well they’re doing despite life’s obstacles. It can help people see what may be possible even when life throws you curveballs.

If you’ve been reading my entries, you probably have figured out that I’m a pretty ambitious person. Thanks to my family, growing up I was taught not to give up.  Obviously, there are some things that I want that are just not possible due to my circumstances, but, if there is a chance it could work with accommodations, I was taught to pursue it until it was accomplished. It started early on when I refused to take assignment modifications even though things took me much longer to complete than most of my classmates. It was the same with going to college, finding an apartment, and eventually finding employment. I was taught to keep fighting regardless of how many obstacles get in your way.

Over the years, I’ve witnessed many people with very similar circumstances choose to not to make use of the abilities they have. Often, these people have more physical capabilities than I do (mainly the ability to verbally speak which is huge), but don’t take advantage of them because they don’t have the ambition to jump through the so called “hoops” to get the accommodations they need. When I see this, it’s incredibly frustrating for me because I can’t help but think if I had the abilities they do where I would be. Another example is when people abuse the Social Security system. While I understand that some disabilities and health conditions are hidden, there are a lot of people who claim disability that would be fully capable of working. I can’t say much because I’m obviously on the system; however, I’m doing what I can to help provide for myself. Do I wish I was able to do more? Of course—I’d love nothing more than to be able to make enough income to be able to not be rely on the government programs, but that’s not physically possible for me.

There are many different types of “giving up.”  A few years ago, there was a big conversation among the disability community about the book entitled, “Me Before You.” It’s about a man who becomes paralyzed and he wants to commit suicide. However, because he’s physically unable to, someone else would have to assist him. There was discussion about ethics. Should someone be able to assist someone in ending his/her life if the person so desires? That’s a loaded question that has no right answer. Some people with disabilities and health conditions feel like their life isn’t worth living anymore and think it’d be better to end their life. Another example of “giving up” is when, sometimes, older people decide they have lived the life they desire and are ready to move on to the next endeavor. They Intentionally do things not to prolong their lives.

“Never give up” has been my motto for years. I used to close with it when I presented to high school students. It’s extremely hard for me to watch others not take advantage of the abilities they do have. I’m sure some people feel that I don’t take full advantage of my capabilities either; and, I respect and accept that opinion. Knowing that just pushes me to try and accomplish new things. For me, giving up will never be an option. My family and friends have worked too hard to support me in all my endeavors for me to give up on them. Sure, I have days where everything is going wrong and I feel like giving up on everything—I think everyone does, but it’s in those trying times where Jimmy V.’s words really come to fruition. “Don’t give up…don’t ever give up.”

***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.

Ever imagine what a perfect world would look like? A world where everyone would see eye-to-eye, where there’d be no right or wrong, where everyone was treated equal? What would that even look like? In today’s day and age, it’s hard to even fathom.  What would a perfect world even look like? Would there be sickness? Would there be disagreements? How would every person be treated? Would there be disability? If so, what would ideal services look like? All of these are deep questions to ponder and there isn’t a right answer.

As I mentioned before, I’m not an overly religious person, but I do believe that there is a reason I survived complications from a traumatic birth. I believe I won’t truly know why until I reach the other side, but there is a reason why I survived. Admittedly, when things get hard due to having cerebral palsy or not having sufficient services to help me live the life I desire, I think about this. Thoughts such as, “why can’t I get the support I need?” or “why do I have to deal with this?”  often creep into my head when things aren’t going right. Of course, it does no good to dwell on it, but the fact is that it’s unavoidable.  

The Americans with Disabilities Act was signed 32 years ago this month. Laws such as this have made a huge impact on the lives of people living with disabilities, but, yet, many people struggle to get long-term care support services. I’ve written about my care situation many times.   While it’s been a few months since I’ve written an entry about it, things haven’t improved. For over six years now, I’ve been hiring my own caregivers through IRIS Self-directed Personal Care. In that time, I’ve experienced the whole spectrum of craziness. Some of the stories you wouldn’t believe. The bottom line is still I can’t get reliable workers. Practically every day, I’m dealing with trying to fill a shift because someone called in. My parents continue to be my saving grace, but this has put a strain on our relationship too. They’re retired and want to travel all over the place as they should be able to do, but, because of my situation, they can’t leave me behind. This has resulted in arguments because they want me to go with them on multiple longer trips (because they can’t risk leaving me hanging if someone calls in or doesn’t show), but I don’t want to be gone that long for multiple reasons. First and foremost, if I’m gone a longer length of time, I risk losing the workers I do have—even with the low wages they make, these college students count on the income. Second, I have a job and commitments I need to fulfill. Yes, most of it is remote, but I have an elaborate computer setup I use at my apartment. When traveling, I have an iPad that I bring along that I can attend meetings on, but I can’t complete what I need to do on it. “I hate being a burden,” I told my mom during one of our recent discussions about this topic. Of course, she told me that I’m not, but I explained that I know I am. This seems to be a frequent conversation these days.

Long-term care services go beyond daily care needs. There are many disparities among things such as housing, transportation, therapy services and medical equipment. After direct care, housing and transportation are the two most talked about disparities in the disability community. There aren’t enough accessible housing options for those with disabilities. If people want to live in a non-segregated setting, finding something accessible is nearly impossible. I’m fortunate to have found my apartment over 10 years ago. While it started out as being a complex for those with disabilities, it has since changed to a complex for people who receive housing assistance—not only people with disabilities. Personally, it’s still not the ideal situation for me because I don’t think of myself that way (in my opinion, I’m only considered to be low income because of the restrictions I have due to my disability), it’s better than nothing. Transportation continues to be another issue for people with disabilities. Simply put, there aren’t enough accessible options available. I’ve had to limit my trips out and about because the only accessible cab in my city is so unreliable.  Disparities in treatment options and equipment also continue to be a challenge for many people with disabilities. Limiting the number of therapy sessions one can receive because it’s not considered “rehabilitative” is ridiculous. In my opinion, if therapy helps a person feel better and possibly prevents losing more function, they should be able to continue with therapy. These services are necessary to keep a person as healthy and, in some cases, as independent as possible.

In a perfect world, assuming disability a part of it (we could debate that issue forever and never come to an agreement), care would be something that is readily available to those who need it. Caregivers would get paid adequate wages and receive benefits and training. People who needed care wouldn’t have to fight tooth and nail to get dependable hard-working people to assist them with their basic needs. All long-term care services would be available to those who need them without having to jump through a million hoops to justify you need them.

Unfortunately, we know that a perfect world doesn’t exist and probably will never will. This means that we have to continue to advocate for what we deserve. Often, when we constantly advocate for what we feel what’s right, it feels like we hit dead-ends; like we’ve done all we can, but things aren’t changing. It’s in those challenging times that we have to continue to push ourselves to fight for what’s right. There may never be a perfect world, but knowing our efforts will impact generations that come after us should give us motivation to continue the fight!

***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.