Stacy Ellingen

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Stacy’s Journal: The Broken System

By Stacy Ellingen, 2018-11-01

When’s my next shift?  Will the person show up?  What do I do if they don’t?  Am in the right program?  What will my future look like?  While most people my age worry about things like wedding plans, their kids’ activities, and buying or remodeling a house, I’m faced with questions that nobody should have to worry about.  As I discussed in my August entry, my family and I have started looking into different care and living options for me.  Until we recently started researching the options, I had no idea of how absolutely messed up the long-term care system really is.

As I explained in previous entries, when I started college at UW-Whitewater, I was on a wavier program which allowed Medical Assistance to pay for my cares with an agency.  When I graduated and moved back to Fondy, my parents and I met with the local Aging and Disability Resource Center (ADRC).  At the time, we were presented with two long-term care program options—Family Care and IRIS.  Back then, Family Care really didn’t have self-direction options, so IRIS was the obviously right choice for me.  At the time, the home care agencies I was trying billed Medical Assistance, so that wasn’t an issue.  When we realized that the care agencies weren’t working, I got on the waiting list for Self-Directed Personal Care through IRIS.  It worked out that right around the time I got on SDPC I found out that I got the apartment in Oshkosh.  I was very lucky that the care agency that was connected to the apartments worked with us and billed through SDPC.  That worked incredibly well for over five years until rules changed in IRIS no longer allowing third-party vendors for SDPC.  Long story short, I went to an agency that billed Medical Assistance for eight months.  For various reasons, that didn’t work out, so I went back to SDPC and have been hiring and managing my own staff for over two years.  As I’ve explained, it’s a lot of work and stress.  For the time being, my parents and I are making it work because basically we have to, but we realize that this isn’t going to work long term.

When my sister settled down in the Madison area about  three years ago, I thought that I’d eventually move down there—not only to be closer to her, but since it’s a bigger city, I had thought that services would be better and there’d be better opportunities.  Just over a year ago, I got on waiting lists for two income-based accessible apartments in Madison.  We knew that the list was years long, but at least I was on the list.  A few months ago, when cares really started becoming a challenge again, my mom and I started researching our options.  What we’ve learned is that the options are very limited and the “system” is unbelievably broken.

In early October, my mom and I went to Madison for a day and met with the ADRC and the Independent Living Center.  My sister happened to have the day off, so she joined us.  I went into these meetings with a very open-mind wanting to learn about all the options available.  We learned that everyone who receives long-term care services in Wisconsin has to in one of three programs: IRIS, Family Care, or Partnership.  IRIS is the least restrictive and Partnership is the most; Family Care falls in between.  Initially, our first thought was to switch to Family Care because it still has self-direction options, but yet it sounded like they’d help me manage my care.  Perfect, right?  We then began to ask questions about the care agencies and housing.  Due to the care shortage everywhere, agencies are having a hard time filling shifts and many aren’t taking on new clients. 

There are several different types of living options for people with disabilities, but, unfortunately, none of them are really appropriate for me.  There are basically Adult Family Homes, Assisted Living Facilities, and Residential Care Apartment Complexes (RCACs).  There are variations of these, but they are the main categories.  Adult Family Homes are basically group homes.  There are very few for those with physical disabilities, and honestly, I don’t want that.  Assisted Living Facilities usually have age limits (usually 55).  RCACs are probably the closest thing I’d consider, but I don’t fit the criteria (usually require less than 28 hours of care per week and need to be able to transfer independently) for those either. We asked about how income-based housing works.  The Dane County Section 8 waiting list is now closed, but they won’t even tell people where they are on the list.  You aren’t allowed to tour an apartment until you’re at the top of the list and your application has been accepted, so you’re expected to apply for these apartments without even seeing them!  From the little information we were able to find online about them, we learned that the apartments are usually one bedroom and are quite a bit smaller than what I have.

After learning a lot of information, my mom and I discussed our options on the way home.  I realized that I’d be no better off in Madison.  My apartment here is really pretty nice, and we can work on improving my situation here rather than starting all over down there.  I had decided I wanted to look into Family Care in Winnebago County.  It wasn’t an easy decision as I felt like I was giving up my independence I had in IRIS, but, nevertheless, I was ready to at least consider it because I understand something needs to change.  My mom called the local ADRC the next morning to try to setup an appointment to learn more about Family Care.  The case worker asked why I wanted to switch.  My mom explained that we were just having too much trouble with cares and wanted to learn about Family Care.  The worker wasn’t very nice or helpful, and she told us that we’d be no better off because agencies are having the same problem.

My mom and I have done some more research on our own and found out that there are two Managed Care Organizations (MCOs) that work with Family Care in my county.  Neither of them will meet with us unless I enroll.  The list of their providers is on their websites; however, you don’t know what your options truly are until you enroll and apparently have a team meeting.  It’s incredibly frustrating because there are a lot of home care agencies out there, but because they get a better deal with contracts from the MCOs, very few of them accept Medical Assistance.  The few agencies in my area that do seem to be either be full or only provide services during daytime hours which makes no sense to me.  How can a home care agency that provides personal cares for people only provide care until 7p.m.? I’d be stuck in bed for 12+ hours! 

Where does all of this leave me?  Good question.  Nobody really has a solution at the moment.  We continue to do research and look for options.  Personally, it’s very nerve-racking and depressing knowing there isn’t a good solution.  What’s one supposed to do?  Many people say raise wages for caretakers; while I agree that’d definitely help, I don’t think it’d fix everything.  I’ve spent many sleepless nights pondering; I don’t know what the answer is.  It’s not likely to happen anytime soon, but I think a complete overhaul of the “system” needs to happen.  I’m not even sure what that would entail, but things need to change.

So, while I’d give anything to have the worries most people my age have, I have to remind myself that I have a special purpose in life—it’s to advocate and pave new paths for people with different abilities.  I don’t have the answers, but I know giving up is not an option in my family! 

***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:  Giving Back

By Stacy Ellingen, 2018-10-01

Whether it’s Loaves and Fishes, Optimist Club, donating blood, or something else, most people enjoy giving to others.  Volunteering or being active in the community often makes people feel good about themselves.  For many people with disabilities, it often seems impossible to give back to the community.  Barriers such as transportation, communication, or just simply physically being able to do the task at hand often prevent our ability to volunteer.

Growing up, my mom was always involved in something it seems.  Whether it was teaching Sunday school, serving on church council, or being the President of the ARC, she was and continues to be involved in something.  My sister followed her example by volunteering at the hospital in high school and now she volunteers with a spinal cord injury group in the Madison area.  Due to my physical limitations, I had to find different ways that I could give back and be involved in the community.

Although I probably didn’t realize it, I started giving back when I was really young.  Beginning in elementary school, almost every year I would make a presentation to my class about why I was the way I was.  Obviously, for the first few years, it was pretty basic and didn’t go into much detail about what actually happened during my birth, but, as we got older, I went into more detail.  My message always was that I’m just like all of you except my muscles don’t work like they’re supposed to.  It helped my classmates understand and feel comfortable with my circumstances.  In high school, I also presented to a couple of speech classes about the different communication methods I used.

In college, I occasionally was invited to speak to education classes about living with a disability.  The students in these classes were going to be teachers and were interested in how teachers accommodated me.   I still occasionally speak to classes at UW-Oshkosh.  It’s a little nerve-racking because these students are really listening to what I’m saying and may someday use something I talked about in their own classroom.  It’s also very rewarding to me because future teachers are learning from me!

I was fortunate to have an incredible opportunity for a few years while I was in college to be a volunteer columnist for my hometown newspaper.  What started out as a failed job shadow tour (because, at the time, the newspaper layout room wasn’t accessible), turned into an incredible experience.  Every other week, I wrote a column about living with a disability.  I wrote about all different topics.  It was very well received by the community and the exposure was great.

Like as everybody says, the Internet has opened up a whole new world.  As I’ve explained in a previous entry, I’ve been a part of many online disability support groups for many years.  First, it was egroups; as the web advanced, groups emerged on social media sites.  These groups not only allow people to share valuable information with one another, it also allows people to share experiences and develop relationships with those with similar circumstances.  I’ve been able to connect with many parents of younger children who have cerebral palsy.  I’ve shared my experiences, answered questions, and offered advice on various topics.  By doing that, I feel like I’m “giving back” in some small way.  It’s really a great feeling.

Recently, I have been able to get involved with some disability advocacy councils.  Last year, I was appointed to the Wisconsin Independent Living Council.  The Council runs the eight Independent Living Centers across the state.  While I’m still learning the ropes, being a member makes me feel like I’m contributing.  I’ve applied to a couple more boards and councils, and I hope to get more involved in disability advocacy efforts soon. 

While I may not be able to “give to the common good” in a traditional way, I find other ways to contribute to society.  I truly believe every single person on Earth, regardless of his/her circumstances, has something to give.  Sometimes, a person’s gifts and talents may not be blatantly obvious, but if we take time to dig deep enough, I believe you’ll find a special talent in everyone! 

***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:  A Dose of Reality

By Stacy Ellingen, 2018-09-10

“Life isn’t fair.”  Most of us have heard that saying more than once in life.  Whether it’s your favorite team losing a game or learning devastating news about a loved one, hearing someone say “life isn’t fair” in those situations often isn’t what we like to hear.  As I’ve said in previous entries, comparing ourselves to one another is human nature.  Most times, when we compare ourselves, we are invoking pity on oneself over our circumstances.   It’s during these times that life truly doesn’t seem fair.  For people with disabilities and health conditions, self pity is something we vastly try to avoid, but, sometimes, at least for myself, I can’t.

I admit, the last few months have been pretty rough.  Many issues relating to having a disability have surfaced, and I’ve been faced with a dose of reality.  My care situation continues to be an unbelievable struggle.  I had four people quit in one week.  Two of the people were brand-new hires and didn’t show up for training on multiple occasions.  I try to give people a few chances, but, when it comes down to it, I need responsible people because I literally depend on them to live.  Due to these people quitting, I’m left with a ton of open shifts.  Thank goodness my parents are retired because they’ve been my savior.  I’ve had to go to their house for a few days and they’ve also come up here (it’s about a half hour drive) multiple days per week to help me.  I also often go without a lunch shift (which includes using the restroom).  This situation isn’t at all what I want.  I absolutely hate relying on my parents.  I’m burdening them and their plans.  They, of course say, it’s ok, but it’s not!  People tell me that I can’t take it personally when people no show or quit, but it’s almost impossible not to under these circumstances.

Due to these care issues, discussions about my future have started.  Quite frankly, it’s pretty depressing.   I’m a very realistic person, but I guess I’m also a dreamer.  While I know that we need to come up with a better plan or solution, in the back of my mind, I ponder what if I could meet that special person who I could spend the rest of my life with.  Everything from around the clock care, to group homes, to assisted living have been brought up.  I understand these are the realistic options for my situation, but, honestly, it breaks my heart that we have to even discuss these options for me.  Boastfully, I take a lot of pride in the independence I do have.  Even though, deep down I understand assisted living or a nursing home will probably be reality for me at some point down the road, I’m only 33 years old.  I don’t want that for myself.  Selfishly, I think I deserve better.

Though definitely most prevalent, cares aren’t the only issues I’ve had.  Earlier this summer, I saw a gastrointestinal specialist to see if there was anything that could be done to prevent more stomach issues.  I guess I was hoping for some magical solution; instead, I was basically told nothing could be done and to probably expect more problems.  Unfortunately, due to cerebral palsy, it’s just the way my body is.  Additionally, I had been dealing with another medical issue for over six months; I finally saw a specialist for it last month and learned, though it can improve with treatment, it’ll likely never completely go away because of my condition.  Thankfully, it’s very minor and something I can easily live with, but it’s just one more thing to deal with.

Additionally, I’ve been dealing with some social issues due to my physical limitations as well.  People make plans and try to include everybody, but don’t realize that the plans aren’t realistic for a person in with my circumstances.  While I know people never mean to exclude me, it’s very frustrating when I’m not able to participate in things due to my physical limitations.  Usually I’m pretty good at seeing happiness through other people’s eyes, but, in some situations, it’s almost impossible to do.  There are just some things that I desperately wish I could do, and when people I love get to do them, sometimes, it’s just hard. 

 How do I deal with self-pity and disappointment?  Unlike most people my age, I don’t have a significant other to vent to or to comfort me.  This often poses a problem because often, besides a few close family members and friends, the only other outlet I have is social media.  I often irrationally post something on Facebook out of frustration.  Far too many times I’ve heard it from my mom because family members have called her asking what’s wrong with me.   I’ve gotten better at refraining from posting, but, admittedly, I’m not perfect.  Putting my feelings on Facebook allows me to talk with friends who have similar situations.  Depending on what the situation is, I often just message people now instead of posting.

Do I want pity?  Absolutely not!  I certainly admit, though, there have been far too many times lately when I felt hopeless and sorry for myself.  It really does no good, but it’s human nature to.  It’s during those difficult times that I rely on my wonderful family and friends to help me through.  I also think people with disabilities have a stubborn side to them, and, often, I think that’s what helps us persevere through the challenges life throws at us! 

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

Stacy’s Journal:  When Obvious is Too Obvious

By Stacy Ellingen, 2018-07-31

A tv commercial demonstrating how to interact with those with disabilities has been running in my area.  While the commercial is positive and has accurate advice, when I first saw it, I questioned why it’s even needed.  After all, we’re in the twenty-first century.  Shouldn’t people know to treat a person who happens to have a disability like any other person?  Unfortunately, that’s not the case.  Although, it has significantly improved over the years, the general population still isn’t comfortable with people with disabilities.

 “She’s drooling.”  That’s what a man walked up and said to my mom as he handed her a paper towel in a congregational meeting after church one recent Sunday morning.  Very shocked and not wanting to make a scene, my mom quietly said, “thank you.”  I, on the other hand, was ready to walk out of the room right then and there.  Mom made me wait until we voted on the issue and then we left.  Words can’t describe how utterly embarrassed I was.  I don’t even think that the people sitting at our table realized what had happened (which is a good thing), but that’s not the point.  I’ve been going to that church all of my life and know that man has seen me many times before.  I realize that in his heart, he probably meant it well, but if these things are still going on in a church of all places, there is a lot more educating to do.  Most of the time, people with physical disabilities are well aware of what their bodies do or don’t do, and to have an adult point it out, is a real slap in the face (kids are a different story because they don’t know better).

Articles about “disability etiquette” have surfaced on social media in recent years.  One thing commonly discussed in those articles is how not to automatically help a person with a disability without first asking.  While it’s human nature to want to help somebody who appears to be struggling with a simple task, often people with disabilities and other conditions take pride in being able to do things independently.  If someone jumps in and tries to help without asking, not only could it hinder the person’s independence, it could also unintentionally harm the person or his/her equipment.  Another common thing often discussed in those articles is how people should always talk directly to the person even if he/she appears to unable to communicate or not cognitively aware.  This happens all the time to me.  Rather than asking me a question directly, they’ll phrase it in third-person and ask the person who I’m with.  This drives me crazy!  Granted, the people I’m with often answer questions for me just to save time, but questions should be always directed toward the person it’s about (if he/she is present) .

While those articles are great, I often wonder who reads them besides those who live and work in the disability community.  Generally speaking, most family and friends of someone with a disability learn fairly quickly what’s considered offensive to people who have disabilities and health conditions.  I’m betting that most of the people who read those articles certainty agree with the etiquette tips, but aren’t the ones who need the information.

I haven’t seen too many things about “not pointing out the obvious” for lack of a better words.  In my opinion, a lot of it has to do with the way people were brought up.  As I’m writing this, something else dawned on me.  Fifty years ago, people with disabilities were rarely seen in public.  That probably has a lot to do with why many older adults often aren’t sure what to do around people with different abilities.  It certainly isn’t an excuse by any means, but it explains a little bit—some older adults were never around people with disabilities while growing up.

Dealing with other people’s reactions definitely takes an emotional toll.  As I’ve said before, unless a situation presents itself, I usually don’t think of myself as having a disability.  However, it doesn’t sit well when I’m reminded of my differences due to someone pointing out a flaw.  Regardless of whether it was intentional or not, it still hurts.  I’ve learned to laugh most of the comments off, but there are some that really sting.  It’s when those happen that I need to be reminded that I’m a pretty unique person, and sometimes people are totally unaware that their comments are very degrading.  All we can do is keep educating society in hope that one day each and every person—regardless of his/her unique differences—is treated just like everyone else.  It’s apparent that we still have some work to do! 

***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.

Who is going to get me up in the morning?  Do I have lunch covered?  Who has the dinner shift?  Is the bed shift covered tonight or will I have to sleep in my wheelchair?  Did everyone submit hours?  While these aren’t things people typically think about, questions such as these run through my head usually many times a day.  When you rely on others for help with almost all of your basic needs, you’re practically forced to constantly think about these things.

Recently, thanks to “Facebook Memories,” I was reminded that it has been two years since I started hiring my own caretakers through Self-Directed Personal Care (with IRIS).  What a learning experience it has been!  Before I switched to SDPC, I had been with many different home care agencies over the years.  As I explained in a previous entry, I started with home care in junior high or high school.  Back then, it was just for like an hour after school just to help me off the bus, get me inside the house, help me to the restroom, and feed me a snack.  It was when I moved to UW-Whitewater that I truly learned what home care was.  Although, I didn’t realize it at the time, the care agency that I had down there was by far the best agency I’ve had.  Sure, I had some issues with them, but they worked with me, and always made sure I was well cared for.  Granted, I realize a lot of it probably had to do with the people I became friends with, but the administration worked with clients to ensure  they were happy with services.  After college, while at my parents, I worked with two different care agencies which for various reasons didn’t work out.  When I moved to Oshkosh, I started with an agency that was connected to the apartments I moved into.  I was with them for over five years.  Unfortunately, due to a rule change, I had to switch agencies.  I was with another agency for eight months and I had a plethora of issues.  Tardiness, no shows, and the caliber of workers were just some of the problems I had.  It wasn’t safe for me to stay with the agency, so I switched to SDPC.

Hiring and scheduling my own staff is like a full-time job.   I post ads online on places such as Facebook and  Fortunately, my mom helps me with the initial process.  We may be changing how we do things in the near future, but, for now, when I get a name of a person, I forward the information to my mom.  She calls the person, tells them a little bit about me, and sort of does a phone interview.  If the person is interested, I then email the person the packet.  I tell them to print the paperwork off, fill it out, and to email me to setup a time to drop it off.

Unfortunately, it’s getting harder and harder to find people.  Most job websites now change to post jobs.  I’d maybe consider it if I thought It’d help get more applicants, but I honestly don’t think that’s the case.  One of my biggest problems is that I have short shifts.  My longest personal care shift is two hours.  Understandably, many people don’t want to work for an hour or two at a time.  On the other hand, though, what’s a person like myself supposed to do?  I don’t need, want, or quality for around the clock care.  I just need assistance during certain times of the day.  Of the hundreds of employee packets I send, I’d guess I hear back from less than 25% of the people. When I do get a person’s paperwork, it’s a gamble whether or not the person will still be interested in the job by the time the paperwork gets processed.

With the Fiscal Employer Agency (FEA) I have, the amount of paperwork people need to fill out is ridiculous, and it takes at least two to three weeks (longer most of the time) to get people approved.  By that time many have often found different jobs.  Yes, I’ve thought about switching to a different FEA, but there are different factors that go into that., First of all, the last time I checked, the FEA I have was the only one that had an electronic time sheet system.  For me, that’s a must.  I have to do everything electronically.  I haven’t looked into it recently, but I did hear that another FEA may have started an electronic system.  Secondly, there are only certain dates when they do transfers, and you have to get all of your workers to fill out and sign paperwork months prior to the date.  Frankly, that’s just not feasible in my situation.  I have staff turnover almost monthly and I can’t imagine having to work between two different FEAs during the transition trying to figure everything out.  In the future, I may reconsider because other FEAs are said to have faster turnaround times for new workers, but, for now, I plan to stay with the one I have.

I currently have about 13 workers (besides my parents), but only six or seven are really active.  I’ll just say you learn a lot about people when you’re the boss.  It’s amazing how much work ethic vary from person-to-person.  I’ve learned that with some people nothing gets done unless I’m right there watching.  I’ve also realized that some just don’t care about how they treat otters.  In addition to people giving me attitude when I ask them to do things, some people try to rush my cares so they can leave early.  I’ve had multiple people quit on very short notice.  Last year, a person who had been my main aide for several months, decided to quit showing up for shifts without any notice, and stopped responding to texts and calls!  On multiple occasions, people have called in on short notice, including in the middle of the night, or not shown up at all.  When that happens, I message everyone in my group right away to see if anyone can help me.  Unfortunately, not many people are willing to pick up shifts on short notice.  Depending on what shift it is, I often go without substantial food or using the restroom until the person for the next shift comes.  I’ve learned to always have some finger foods (like pretzels and fruit snacks) in baggies on my table where I can access them.  I’ve slept in my chair a few nights when nobody could help me to bed or get me up in the morning.  It’s unhealthy on multiple levels, but you do what you have to.  My parents always offer to come help, but, unless I’m stuck in bed in the morning, I usually say no because I don’t want to rely on them all the time.

Even with that many workers, I still constantly struggle to fill shifts.  Since early May, I’ve been at my parents every weekend but one because I can’t find people to fill shifts.  It’s incredibly frustrating because my parents just retired and want to travel, but, until I get more secure staff, they feel like they can’t go anywhere.  Often, they want me to just travel with them so they don’t have to worry about me being stranded without anyone, but that’s a catch 22 because then I’m not here for the staff I do have or to collect paperwork from new workers.  Plus, I sometimes have no desire to go where they want to go, and I feel like they should be able to travel without me.

The direct care shortage is nationwide, so I know I’m not alone in this battle.  Agencies, nursing homes, and hospitals are struggling to find caretakers too.  People say higher wages would help.  While I agree it’d help some, I don’t know that it’d be a “fix all” to this—especially in my situation.  I wish I knew what the answer was, but I don’t.  Until a solution is figured out, I guess we just have to continue to try our best working with what we have. 

***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 Yearning to Fit In

By Stacy Ellingen, 2018-06-03

“Never judge someone by the way he/she looks.“  Most people are taught that beginning at an early age.  While we all know it’s not right to judge one another, everybody does—it’s human nature.  Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are taught to believe that everyone is equal and nobody is the better than anyone else.  Theoretically, this means that everybody should feel like they “fit in” everywhere all the time; however, it’s not realistic.  Most people experience feeling “singled out” negatively more than once in their life.  Often, it’s unintentional and purely situational, but, regardless, “sticking out” usually isn’t something to be desired.  People with disabilities often “stick out” more than most—it’s just a fact.

My disability is pretty noticeable.  Some people have very mild cerebral palsy and the effects often go unnoticed by many.  I happen to have a pretty severe form of cerebral palsy.  In addition to using a power wheelchair, I can’t verbally speak clearly and because of my fluctuating muscle tone, my arms and legs often move unintentionally.  My head often droops and sometimes my mouth hangs open or my tongue sticks out.  I also drool. There’s no way around hiding the fact that I’m “different.”

As I’ve explained in previous journal entries, I accept that I have a disability, but it doesn’t define who I am.  Unless a situation presents itself, I don’t think of myself as being disabled.   Growing up, I guess I became accustomed to “sticking out.”  Since I was in regular classes, classmates got used to having me in class and understood what I was capable of.  It wasn’t a big deal.  College was unique.  UW-Whitewater specializes in serving students with physical disabilities, so I certainly didn’t stick out on campus.  In classes, sometimes I felt like I stood out because I was the only one with visible limitations, but again, after people got to know me, it wasn’t an issue.

As I get older, I notice I feel I stick out more at social gatherings.  Whether it’s a retirement dinner for my mom, a friend’s wedding, or a cousin’s graduation party, I feel like I stick out like a sore thumb.  I think it has a lot to do with meeting new people who are unaware that the person that the event is for has a relative or a friend who has a disability.  Now, obviously, in all three of those scenarios, I was invited because the person wants me there and they see past my disability.  Often, at such events, the harder I try not to stick out (besides being in wheelchair), the more my muscles tense up which causes unintentional movements and noises.  Unfortunately, it’s just how my body works.  My mom, dad, and sister know not to tell me to try to fix it because it only makes it worse when I try harder. I also need to be fed at these events.  Being fed automatically draws attention to oneself.  Again, the harder I try not to make a scene, the more my body will react while eating causing me to cough and food to drop.

Admittedly, I also have some social anxiety when attending events where there are people my age.    While I know most people don’t expect me to get married and have a family, it doesn’t mean I don’t crave that.  I realize most people probably don’t even think about it (which is good), but I often feel singled out because I don’t have that.  Seeing friends and cousins with significant others and children at events can be pretty hard.  As happy as I am for them, it makes me wonder if it will ever happen to me.  The older I get the less likely it is and that’s not an easy thing to accept.  I try my best to experience happiness through other people’s eyes, but, sometimes, when everyone else around you seems to have what you desperately want, it can be hard.  As hard as it can be, I’m eternally grateful that I have amazing friends and family who always include me despite my circumstances.  I’m one lucky girl!

I’d love nothing more than to actually walk down the aisle and stand with the other bridesmaids at my friend’s wedding this weekend; however, I have a different path in life.  Instead, I will proudly roll down the aisle thinking about how lucky I am to have the bride as one of my best friends for over 25 years.  Will I stick out?  Definitely, but I’m honored to be in my friend’s wedding.  She obviously doesn’t have a problem with my circumstances, so why should I?

Having a pronounced physical disability often makes fitting in difficult.  Some people are completely okay with not fitting in because of their limitations, and others work hard to hide theirs.  I think I’m somewhere in between.  While usually I don’t have a problem with being seen as different, there are times where I desperately want to fit in.  It’s during those times that I need to remember that I was chosen to have a different path in life.  My purpose in life is different than most; I’m here to show people what is possible despite the curve balls life throws at you! 

***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 Repercussions of Change

By Stacy Ellingen, 2018-05-01

As the saying goes, “if it works, don’t fix it.”   In today’s world, where it often seems like we’re trying to improve everything for one reason or another, that saying is frequently forgotten or ignored.  While it’s human nature for people to want to make things better, sometimes people forget to consider the repercussions of changing things will have on others.  Change is hard for everyone.  Due to a variety of reasons, people with disabilities often struggle with change.  Whether it be a change in a material good or a change in an essential service, changes affect all of us.

I’m the first to admit that I don’t do well with change.  I’m convinced a big reason for this is because I live such a scheduled life.  As I’ve shared in a previous entry, due to having drop-in cares, my whole day is scheduled—everything from the time I get up in the morning, to the times I use the restroom and eat meals, to the time I go to bed at night, everything has a set time.  When I’m out of my routine, my body often starts to react in weird ways.

Changes in material goods often have mixed effects on people with disabilities too.  Many times, when material things are improved or upgraded, it often makes life easier for everyone.  However, sometimes when things changed, people don’t realize how it will affect others.  Recently, I read an article online about how the United Kingdom is trying to ban disposable plastic straws because they’re not environmentally friendly.  The article explained why this wouldn’t be good for people with disabilities.  To the average person, this probably doesn’t make a lot of sense.  Why wouldn’t banning plastic straws have such a negative impact on people with disabilities?  For me, personally, being able to drink from a straw “independently” didn’t come easy.  For many years, I either had to drink directly from a cup (someone had to pour liquid directly into my mouth) or someone had to literally hold my lips closed on a straw so I could suck the liquid up.  I think it was nearly college before I was able to use a plastic bendable straw by myself (meaning I’m able to suck liquid through a straw without somebody having to hold my lips shut).  It’s much more socially appropriate to independently drink from a straw than to have somebody pour liquid into your mouth or having someone hold your lips shut on a straw.  Having said that, most hard reusable straws aren't feasible for me (I don't have the ability to get enough suction to get the liquid up with hard straws). Lots of hard straws aren’t bendable either which poses another problem.  Some people, like myself, have a hard time positioning himself/herself to access a regular stick straw; bendable disposable plastic straws are often easier to get at.  Paper straws often aren’t a realistic option for some people with disabilities either.  In my case, because of the way I latch onto the straw, I’d ruin a paper straw even being able to try to suck on it.  Many of my friends with cp have the same issues with straws.  While I’m all for being environmentally friendly, I’m not sure eliminating disposable plastic straws would do much good.

Advancements in technology have made a huge positive impact on lives of people with disabilities.  However, advancements sometimes bring on more challenges that people don’t often think about.  For example, flat screen TVs have become the norm.  While they save a lot of space and are neat, the one thing they normally don’t have are controls on the front of the TV.  Most people wouldn’t even think about this; however, for me, having to use a remote to control the TV presents some challenges.  Due to my fine motor limitations, I can’t just grab the remote and press a button to turn TV on.  In order for me to work a TV remote, it has to be on a hard surface (like a table) and aimed at the TV.  Depending on the setup, the remote often has to be velcroed to the table so it doesn’t fall off when I try to hit the buttons.  Before when buttons were on front of TVs, I could just press them on the TV itself.  Another example of how technological improvements have made some additional hurdles for me is with the adaptive keyboard I use.  Since I was really young, I’ve used enlarged keyboards with mouse functions built-in (meaning I control the mouse by pressing buttons on the keyboard).  I’ve used the same brand of keyboard for over 15 years.  These keyboards wear out because of just over usage.  A few years ago, it was time to get a new computer and It was then I realized that the keyboard I’ve been using hard been discontinued.  I had an assistive tech evaluation done to see if there was anything similar out there.  Unfortunately, to my surprise, there isn’t another enlarged keyboard that has a built-in mouse on the market.  Luckily, the discontinued keyboard still works computers with newer operating systems, so we bought quite a few used keyboards off eBay.  I’ll use those until another keyboard with a built-in mouse is developed.  I can only guess that the keyboard was discontinued due to more advanced products being developed; however, before something is discontinued, there should be something similar made to replace it.

Some home products are often adapted to be made “handicapped accessible.”  Most of the time, these accessible products make life easier for people with disabilities.  There have been times, however, where I’ve found it’s actually more difficult to use adapted products.  One example that comes to mind is when the housing authority tried installing a high-rise toilet in the bathroom in my apartment.  While I can normally use high-rise toilets, because of the way my bathroom is setup, I would have had a much harder time using a high-rise toilet.  Fortunately, the housing authority eventually listened to me and let me keep the regular toilet.  That’s just one example of where an adapted product didn’t work in my favor.

People say change is good, and I agree most of the time that it is.  However, sometimes with all repercussions of the change, it can do more harm than good.  We, as a society, just have to remember to consider how it will affect everybody involved when making a change! 

***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:  Secondary Effects

By Stacy Ellingen, 2018-04-12

Unless a problem presents itself, most people don’t think about their medical well-being on a regular basis.  Sure, people try to stay healthy by doing things such as eating right and exercising, but, unless something feels wrong with our bodies, we normally don’t think about what could go wrong or what we would want done if something catastrophic were to happen.  People with disabilities are no different.  Granted, we often have some extra baggage to deal with (cares, medications, accommodations, etc…), but most of the time, those things become second nature to us—we don’t even think about it

Some disabilities and health conditions are progressive which means the symptoms of the condition get worse as time passes and the effects are eventually terminal.  Fortunately, cerebral palsy isn’t considered to be progressive.  I’ve read in multiple articles that the average life expectancy for somebody who has cerebral palsy is around 70 years old.  Although, cerebral palsy itself doesn’t get worse, people often develop secondary conditions due to cp.  Research also points out that treatments used to help people who have cp sometimes can take a toll on the body eventually leading to premature death.

A few years ago, I wrote about how I was learning to navigate my way through the health care system.  In that entry, I shared a little bit about how I had started having some health issues.  In summer of 2012, I had a Baclofen pump surgically inserted which helps relax my muscles.  Three weeks after that surgery, I had major emergency gastrointestinal surgery.  Since then, I’ve had ongoing issues.  I had another surgery in 2014 and have had a few hospital stays since.  About three weeks ago, I had another emergency surgery and spent a few nights in the hospital.  I had yet another gastrointestinal issue.  Due to my past surgeries and the effects of cp, we found out that I’m unfortunately prone to having more of these types of issues and there really isn’t anything I can do to prevent it.

It’s often said that there isn’t enough focus on treating adults who have cerebral palsy.  There is quite a bit of information about treatments and research to help children with cp, but there’s not much out there for adults.  I’ve had many conversations with friends who also have cp, and many of them feel the same way—although we know cp isn’t progressive, we feel the effects of it impacting our lives more as we get older.  I haven’t done much research lately, but I haven’t seen anything recent on how cp effects the aging process.  It’d be interesting to see studies done on that. 

Like everybody else, each time I go in for surgery, I have to answer those dreaded questions.  What measures do you want taken to keep you alive?  Do you want to be on life support?  Questions such as those aren’t the easiest to answer especially when you’re headed into emergency surgery.  I understand why the questions need to be asked, but, regardless of the situation, they are never easy to answer.

Often times, people, especially those with disabilities and health conditions, are encouraged to have a Power of Attorney of Healthcare on record at the medical facilities they use.  The purpose of the medical POA is to give health care professionals guidance as to your wishes in case you’re ever in a medical condition where you’re incapable of making those decisions yourself.  You can designate two or three people who you would want to make decisions for you and on the form you can answer specific questions about your preferences for sustainability.  People should have the medical POA on record, but a licensed doctor must “activate” it if a situation arose.  Ashamedly, I admit, I have yet to get mine on record.  Every year, during one of my screenings for IRIS, I’m asked if I have one on record.  I’ve had the paperwork printed out for three or four years.  It’s just a matter of filling it out, getting signatures, and sending it to my medical providers.  What’s the hold up, you ask?  Well, aside from finding witnesses (they can’t be family members) to sign it, there’s a psychological aspect to it.  It’s obviously a sensitive issue to begin with, but, for me, it brings up another issue.  For most people my age, their next of kin or their designated person would be their significant other.  Thankfully, I have great family who have agreed to be my designated people, but there’s something about putting it on record that just makes me feel hurt.  I know I need to get it done though.

When I was young, I had no idea secondary health issues were common among people who have cp.  Dealing with health issues definitely isn’t fun, but it’s part of my life and something I’ve learned to deal with.  Having to make tough decisions about “what if” situations isn’t easy either, but I guess that’s called being an adult.  While, at times it isn’t easy to do, I try not to let my issues get in the way and live life to the fullest.  That’s all we can do, right?

***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.

Is it safe to go anywhere anymore?  Regardless of political beliefs, it’s a question is on many people’s minds lately.  Years ago, questions about safety weren’t very prevalent, but due to recent events, we have no choice but to consider “what would you do?”.  As unbelievably disheartening as it is, we have to think about what we would do in a violent situation.  While most people would know what to do (generally speaking) and could physically react to the situation, people with disabilities and health conditions don't have the ability to try to protect themselves.  Truthfully, we, people with disabilities, are among the most vulnerable in violent situations.

I’ve been watching the news coverage of all the horrific events going on, but I hadn’t really ever thought about what I would do if I was in a shooting situation until a friend tagged me in a Facebook post.  The post was written by a teacher in Ohio.  The day after the Florida school shooting, the teacher got the dreaded question from a student—“what will we do if a shooter comes in your room?”  The teacher explained that she cares about her students very much, but since she was in a wheelchair she couldn’t protect them like an able-bodied teacher would.  She told them to escape if they could and not to worry about her.  A student in a class then explained that they had already discussed it and if anything would happen they would carry her.  That post touched me on so many levels.  As I’ve explained in previous entries, if my circumstances were just a little different (mainly if I had the ability to speak), I would have been a teacher.  It made me think about how I would have responded to the question.  I would have said the exact same thing.  Of course, I’d want my students to escape if they could rather than worrying about me.

The post also made me think about other situations.  Unfortunately, these awful things seem to be happening all over the place in today’s world.  I’m blessed to have the cognitive ability to know what was happening, but physically, I wouldn’t be able to do much to protect myself or others.  I could move my wheelchair around, but I’m unable to get out of my chair myself.  I can kind of cover my head with my arms, but with cerebral palsy in exciting or stressful situations my body tends to really tense up.  I can only imagine how tense my muscles would be in a situation like that.  Oftentimes, under dangerous circumstances, you are supposed to be as quiet as possible.  For me, the harder I try to be quiet the more noise I unintentionally make.  It’s just the way my body unfortunately works.  Also, many times in those situations, herds of people often run to escape danger.  When a person uses a wheelchair or another mobility device, it’s often very difficult to navigate through a crowd of people. 

Those with mobility limitations aren’t the only ones more at risk in those violent situations.  People with intellectual disabilities may not understand what’s going on in dangerous circumstances.  This could cause behaviors that could provoke the situation even more.  Screaming and lashing out could attract the suspect’s attention.   Depending on the circumstances, running could also cause danger.  Some people with intellectual delays may not understand the importance of following directions under the circumstances.

It’s troublesome to me that this even has to be a topic of conversation.  As a person with a disability, it’s my reality that I’d very vulnerable in if I was ever in a violent situation.  Like most people, I’d rather have others save themselves than risk their life helping me; however, I truly believe most people in this world have a good heart and would risk their own life to save others.  It’s getting to the point where it’s a risk to even leave our homes, but we can’t let a few bad people ruin life for the rest of us.  Although, at times it’s hard to believe, the good still outweighs the bad in the world, and we have to continue living life like we always have.  If we put ourselves in a bubble, we would conceding be to those few evil people, and we don’t want to do the that! 

***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 would the world be like today without cell phones or mobile devices?  It’s nearly impossible to fathom.  We, as a society, have become dependent on these devices for nearly everything we do.  We use cell phones for everything from getting travel directions to ordering dinner to be delivered.  The capabilities of mobile devices are endless.  Some people feel that we are “too connected,” but for most people, their cell phone is like another body part.  For many people, including those with disabilities, mobile devices have become a real lifeline.

When cell phones became popular in the late 90s, I never in my wildest dreams thought I’d own one—let alone depend on one.  Due to my limited fine motor and speech abilities, having a cell phone didn’t seem beneficial to me.   I remember my mom was the first in our family to get one.  She had to get it for work and she merely used it to make and receive phone calls.  It was so big it barely fit in her purse.  Funny to think that that was only about 20 years ago.  How times have changed! 

It wasn’t until midway through my second year of college that I got my first cell phone.  My parents got it for me for Christmas and thought it would be good for me to have in case of an emergency.  I could call one of them or my sister, and, even though I’m nonverbal, they knew my speech and schedule well enough to figure out what I needed.  My first phone with a stick phone (back then, most phones were flip, but since it had to be my tray, I couldn’t use those).  It also had to have protruded buttons because I couldn’t press ones that were sunk in.  Finding a phone like that wasn’t easy.  My first phone was velcroed on to the mount for my communication device.  As I explained in a previous entry, unless I was going to class, because it was so bulky I normally didn’t have my device on my chair; therefore, I really didn’t use my phone very much when I first got it.  Eventually, I figured out that I could call my friends and they could pretty much figure out what I needed because again they knew me so well.  Actually, I remember I had a lot of night classes, and if they got out early, I’d call a friend and she knew I needed her to call the transportation service to come pick me up early.  It worked pretty well.

It wasn’t until a year or so after getting my first phone that I realized that I could text.  I was playing on my phone waiting for my Art History class to start and I found the text message option.  I texted my sister asking when her knee surgery was.  Back then, I didn’t even know there was word prediction on my phone, so I typed the message out using the number keys.  We didn’t realize it at the time, but sending that message changed my life.  Because of my limited fine motor ability (I do everything on the computer on an enlarged keyboard with a keyguard using the last two fingers of my left hand), nobody ever thought I’d be able to text.

While I’m sure I did to some extent, I don’t remember texting nearly as much in college as I do today.  For me, it was definitely an access issue, but I also don’t remember texting being as popular it is today.  After graduating, when I moved back in with my parents, my dad figured out a way to mount my phone to my wheelchair.  Thankfully, he’s a pretty handy guy and used a footplate from an old wheelchair to create a phone mount that fits right by my joystick.  Needless to say, having my phone on my chair has changed my life! 

After my first phone, I went through two or three more button cell phones.  By then, touchscreen phones had become popular, but again because of my fine motor limitations and spasticity, nobody, including myself, thought I’d be able to use a touchscreen phone.  After realizing button cell phones were going to quickly become nonexistent, I began looking at my options.  After playing with other people’s phones, I surprisingly realized that I could maneuver touchscreen phones pretty well.  I’m now on my third touchscreen phone and I absolutely love it!  Somehow, I’m blessed with double-jointed thumb which I use to do everything on my phone with.  I don’t even use an enlarged keyboard!

Much like everyone else, having a smartphone has opened up a world of possibilities for me.  I do everything from emailing, to checking Facebook, to surfing the web, and playing Words with Friends on it.  I also text a lot.  Undoubtedly, most adults my age text, but, since I’m nonverbal, I use texting in place of talking to people on the phone.  I text if there’s an emergency; I text if I need help; I text if I have a question; and I text if I just want chat.  Friends and family know that’s the best way to get ahold of me.

Like most people, I have lots of different apps on my phone.  Everything from ESPN to The Weather Channel, I have the popular apps.  In addition, though, I have some apps that are unique to my circumstances.  One of the apps is an emergency app which just a simple text box that has basic information about me and tells about my disability and explains how to best communicable with me.  If I would get stranded somewhere, I could open the app and have people read how to help me.

The second app that really has made a huge difference for me is Proloquo2Go.  It’s the communication app that I’ve had on my iPad for a few years now.  I didn’t realize I could have the app (it’s a paid app) on more than one device until late last summer.  I was playing around on my phone, and I tried installing it.  I was so excited when it worked!  Although I still don’t use the app like I’m supposed to (I don’t do much programming unless I have a presentation or something), I still use it to spontaneously talk to people.  I type out what I want to say and it speaks.  It’s really cool because now I have a communication on my chair that I effectively use because it doesn’t get in my way!  Who would have ever thought that a regular touchscreen cell phone would be the answer?  I only wish we’d have discovered this years sooner!

Lastly, my parents got me a video doorbell for Christmas.  It’s kind of scary to think about, but for years I had been opening the door to my apartment without knowing who was door.  I have a power door and when the doorbell would ring, I’d press the opener on my chair to open it, but I wouldn’t know who was there.  Being nonverbal and in a wheelchair makes me pretty vulnerable—it’s just a fact of life.  This new doorbell works off my WiFi and when it rings, I get a video of who is there on my phone that--so I’m able to see who is at my door before I open it.  It’s really cool and makes me feel much safer!

So, for someone who didn’t think she’d be able to use a cell phone to now completing relying on one to help her live independently, I’m very thankful for the evolution of cell phones.  I think we’re just at the tip of the iceberg with technology; I’m excited to see what’s next! 

***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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