Happy New Year!  Many people think of January as a time to get a fresh start.  People often take time to reflect on the past year and think about the year ahead.  Some make specific resolutions while others just wish for a better year.  Many people my age wish for things like a marriage proposal, a wedding, more children, or to move into a new house.  Over the holidays, I got a chance to see many family members and friends.  As I listened to them talk about the upcoming year with excitement in their voice, I couldn’t help but think about my life really is. 

While in the back of my mind, I’ll always wish for those “normal” things, as New Years rolled around this year, I thought about what I have to look forward to.  At the top of my list is getting a new computer setup and a new phone. 

Since mid-summer, I’ve been in the process of getting a new computer.  My current computer is now over six years old and on its last legs.  I originally began researching new computers a few years ago, but I discovered my adaptive keyboard wouldn’t work with updated operating systems.  I had been checking the company’s website periodically to see if there was updated software for the keyboard.   In July or August, I realized that the company had discontinued the keyboard.  It was then I knew I needed some help.   After contacting several different people trying to inquire about how to get funding for an assistive technology assessment (AT) done, I ended up reopening my Department of Vocational Rehabilitation (DVR) case and using “post-employment services” to get an AT assessment done.  After my case was opened, I had to pick a vendor to do the assessment.  Due to a lack of communication, this ended up being a long drawn out process.

I chose to go through my regional Independent Living Center (ILC) to do the assessment.  The assessment was finally scheduled in mid-December.  The specialist asked me a bunch of questions about my history and abilities via email beforehand, so, when he came to my apartment to meet with me, he already had some ideas.  My biggest issue was that I need mouse functions that are built into an enlarged keyboard.  Due to spasticity from Cerebral Palsy, I’m unable to use a regular mouse.  I control the mouse using buttons on my keyboard.  He brought some adaptive equipment for me to try and he did some research afterward; however, ultimately, we discovered the best option for me would be to get a new computer with the same operating system I currently have (and not get the updated system) and buy a new adapted keyboard just like the one I have (luckily other companies still sell the discontinued keyboard).   There isn’t any other enlarged keyboard on the market that has mouse functions built in.  While, admittedly, I’m pretty disappointed that I have to get an outdated system because technology hasn’t advanced enough, I’m thankful that I’m able to at least get a “new” computer.  The AT specialist also recommended some additional software programs that will save me a lot of time.  I’m waiting for him to finish up his report and send it to DVR.   Then, we can determine what the next steps are and hopefully, get it all ordered!

Additionally, I’ve been looking at getting a new cell phone.  My current phone is about a year and a half old.  Depending how old you are, that’s either considered pretty new or pretty old.  The reason I want a new phone is because I discovered I can access a phone with a bigger screen easier.  Given my limited fine motor ability, many people are amazed how well I’m able to use a touch screen cell phone.  I’ve come to depend on my cell for much more than calling and texting.  I use it to communicate with others most of the time.  As I’ve mentioned in previous entries, I have an iPad for a communication device, but, because I can’t pull up to any tables when it’s mounted on my chair, I rarely use it for day to day communication.  I’ve found that I can type a message on my phone (which is conveniently mounted on my chair) and have people read it.  I’m also able go on the Internet and do emails on my phone.  It has really become a lifeline for me.  Having a phone with a larger screen will just make my life easier.

So, while getting a new computer and phone probably isn’t a big deal to most people, it is to me.  It’s something I look forward to this year.   It’s something that excites me because both of these things are things that I spend most of my time on. I’m sure, like every other year, this year will be filled with ups and downs, but that’s a part of life.  We just have to make the best of it!

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

As the saying goes, “A dog is a man’s best friend.”  Many people love pets.  Animals are like therapy for many people.  Many say having a pet actually expands a person’s life expectancy.  For animal lovers, their pets become part of the family.  When pets pass away, the owners grieve almost like the pet is a person.  For many people, a pet serves as a companion.  Either you love pets or you avoid them at all costs.

For many people who have disabilities, pets are a source of companionship.  Pets, mainly dogs, can be trained to actually physically and emotionally help people with disabilities.  Service dogs and their owners go through intense training.  The dogs are trained to do a variety of things based on the owner’s needs.  If a person has a visual impairment, a dog can be trained to guide the person around.  If the person has a seizure disorder, a dog can be trained to detect oncoming seizures.  If the person is in a wheelchair, a dog can be trained to pick up things the person dropped or push automatic door buttons and elevator buttons.  Dogs are also being trained to work with people who have autism and anxiety.  They have a calming effect.  I think it’s absolutely amazing what dogs are able to do.

Personally, I’m not an animal person at all.  I admit, most animals scare me.  I think it’s because if an animal jumps on me, I can’t protect myself.  Although I’ve never had that happen, I shy away from most animals.  When I’m alone walking around the neighborhood and there’s a dog loose in a yard, I’ll likely speed by the house hoping the dog doesn’t chase me.  I’ve had a dog start following me a couple of times, but the owner saw it and came to the rescue.

It’s just not outside dogs I’m afraid of.  Inside pets, such as small dogs and cats, scare me too.  I just don’t like animals crawling on me or rubbing up against me.  I don’t like that I can’t get away from them.  Some of my relatives have dogs.  When I go to their houses for family gatherings, I have to very  vigilant of my surroundings at  all times because when I visit other people’s houses,  I’m usually in my manual chair which means I can’t myself if a dog would jump on me.  I know that my sister and her future husband are planning to get a dog someday, so it’s something I’ll have to get used to.

Years ago, my sister and I each had a rabbit.  They were kept in the garage and we played with them outside.  With some practice, I got to the point where I was able to hold my rabbit on my lap and pet it for a few minutes.  Even then, someone had to be right there in case the rabbit started moving or I got spastic (jumpy).

Many people have suggested that I look into getting a service dog.   While I like the of having a companion and essentially being a “mom” to a living being, I don’t foresee myself getting a dog anytime in the near future.   Aside from my fear of them, pets are a lot of work.  I’m not sure that I’d want to share the time I have people assisting me with my cares with an animal.

Animals are great for some people, but for me, they cause anxiety.  Maybe down the road, my feelings toward animals, but for now, I avoid animals whenever 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.

Often times I get asked if I could have one ability that I don’t have, what would it be.  Many people are surprised by my response.  Sure, I’d love to walk, feed myself, take care of myself, and be able to do things like drive, but the one ability I’d love to have is to speak clearly.  Most people don’t understand the impact that verbal interaction has in today’s world.

Many times people think I have a cognitive disability just because I’m in a wheelchair and can’t speak clearly. I’ve had many different augmentative communication devices over the years.  Many people with speech impairments use communication devices very effectively, but, admittedly, I’ve never been one of those people.  Sure, I used one for classes throughout my schooling, and I still have one for things such as presentations and events where I have to speak to strangers. I don’t use it for day-to-day communication though.  There are a few reasons for this.  One is because, although devices have become much more compact, having it mounted to my chair is cumbersome (I can’t pull up to my computer desk or any table with the mount on).  Secondly, and probably the main reason is that speech programs take a lot of time to learn how to effectively use.  Many people compare it to learning a second language.  Honestly, that concept has never appealed to me.  I’ve learned how to program buttons on my device for what I need to say during certain events (such as conferences and classes), but I find faster ways to spontaneously communicate.  I use the speech I do have and lots of gestures.  I speak in vowel sounds.  For example, my sister’s name is Stephanie.  I call her “et-en-nie.”  It takes awhile to get used to, but if people are around me enough, they usually catch on pretty fast.  If family or friends can’t understand me, they ask me yes or no questions, or I type it on the cell phone.  It may take a little while, but eventually I’ll get my point across. 

Without even realizing it people judge other people.  We all do-it’s a normal human tendency.  I’ve encountered some pretty rude people in my life.  I’ve been stared and pointed at countless times in my life.  Depending on where I am and who I’m with, I usually just kind of ignore it.  Sometimes, when I’m with my parents or sister, they’ll say something to the person, but staring and pointing doesn’t bother me much anymore.  When I was younger and was in school, kids would tease me.  Kids would call me “retard” and say things that did hurt my feelings, but I learned to brush it off.  Kids and adults still occasionally tease me today, but I’ve learned to take it in stride and try to overcome their negativity. 

Probably what bugs me most is when people treat me like I’m deaf or I’m a baby.  People talk to me in real high-pitched loud voice.  I’ve gotten pats on my head, pinches on my cheeks, and even kisses on my cheeks multiple times.  Again depending on where I am and who I’m with, I usually just kind of blow it off.  Sometimes, if I’m with family or close friends, they’ll usually try to explain that I understand everything they say, but sometimes no matter how many times people try tell them, they still do it.  Years ago, we had this elderly lady in church who came up to me every Sunday, talked to me really loud, and kissed me on the cheek.  It never failed.  After awhile, I just got used to it.  I’ve also had people insist on giving me things such as stuffed animals and stickers when I’m out in public. I understand when people do these kinds of things that they’re trying to be nice and aren’t trying to be hurtful.  That said, it does hurt inside and it’s really embarrassing—especially when out with my friends.  Most of my friends are used to it now, and we just laugh it off, but it’s still embarrassing!

I realize people have misconceptions because I’m in a power wheelchair and can’t talk.  I also know that I should use my communication device more to avoid some of the misconceptions, but, at the same time, today’s society should be used to differences.  Whether the person has a disability or not, treat them as normal as possible.  If you have a question, don’t be afraid to ask.  The person with the disability would most likely have you ask it rather then having the wrong assumption be made.  Don’t be afraid to say hi—- it’ll make things a lot less awkward for both of you! 

Though things are improving daily for people with disabilities, some people will never fully understand that we have the capabilities to lead fairly normal lives.  We, as people with disabilities, have an ongoing challenge to prove to the world that we can lead successful lives!

***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.

No matter how many years apart you are, how many kids there are, or how close of a family you have, if you have a brother or sister, there is going to be some amount of sibling rivalry.  Having a child who has special needs in a family doesn’t change that.  As I’ve mentioned in previous entries, I have a younger sister, Stephanie. We are four years apart.

When we were growing up, we fought and got in trouble just like other sisters would.  I’d pull her hair and run over her toes with my power chair, and she’d disengage my chair so I couldn’t move it and move things out of my reach!  Like all kids, Steph stole my clothes and used to tell minor fibs to our parents, and I would rat her out.  I wasn’t an angel either.  I’d get in trouble for something, try to blame it on her, and sometimes mom and dad would believe me! 

When children are growing up with a sibling who has some sort of disability, it may appear that the parents give more attention to the brother or sister with special needs.  It appears that way because a sibling with the disability may need some extra assistance with various tasks.  Though at times, it’s hard, the developmentally typical child will realize that just because mom and dad has to spend more time helping her brother or sister, it doesn’t mean that they love them more.  It’s realized that the extra attention that is given to the child who has special needs isn’t necessarily wanted, but might be necessary. Steph had to do a lot of stuff on her own because our parents had to take care of me.  An example I remember is when she was in 6^th grade, she went to Washington D.C. for chorus.  It was over her birthday, and my mom couldn’t go along because she had to stay and take care of me.

The difference in adult attention is not the only factor that affects sibling relationships.  The typical child may have to deal with issues and do some things that a “normal” brother or sister will never have to.  From going all around a building to find an accessible entrance to dealing with people who stare or treat their sibling wrong, the typical child adapts to a different lifestyle.  At times, it’s not easy, but it’s part of life for the family.  Steph also has had to explain my disability to her friends as well as defend me from people who make fun of me.  She also does some of my personal cares such as feeding me without even thinking twice about it.  Little ways of helping me have become automatic to her.

For the sister or brother with a disability, it’s not always easy either.  Watching their “normal” brother or sister accomplish things that they know they will never be able to do can be difficult.  When we were younger, it were things such as watching her playing in a soccer game, to doing simple chores around the house, to getting her drivers license and dating, that were hard to witness knowing I’ll probably experience those very normal things.  

Over the last few years, as we’ve gotten older, our relationship has changed. Much to no surprise, after attending hundreds of my therapy sessions when she was young, Steph became an occupational therapist.  She often tries to help me by suggesting some therapy techniques to make life easier for me.  Admittedly, being the older sister, I often have a hard time taking her advice seriously even though I know she’s right.  Steph too has to remind herself that she needs to be my sister first rather than a therapist.  We’re getting better at finding a happy medium.

Recently, we’ve entered a new phase of life as Steph became engaged to a wonderful man. As one would guess, this milestone isn’t the easiest for me to accept.  Don’t get me wrong, her fiancé is great and I’ve come to love him; it’s just that seeing my sister in love makes me wish it’d happen to me. It’s not easy, but I’m trying to experience happiness through her eyes.  I do my best to be as supportive as I can, but Steph understands why at times things can be hard for me emotionally.

I’m well aware too that it takes a special guy to marry someone who has a sister with a significant disability. Early on, I’m sure Steph had to explain my circumstances to him. Again, it’s not an easy conversation to have, but Steph did it because she loves me and wants me a part of her life forever. Her fiancé has accepted and embraced the situation which I’m forever grateful for.

Steph and I have started talking about the future—when our parents are no longer able to assist me with things.  I never ever want to be a burden to her life (and that’s something I’ll always be very cautious about), but Steph wants to be there for me when that time comes.  Down the road, I’ll likely move closer to her, so she can assist me.  “That’s what family is for,” she says.

I know having a sibling with a disability isn’t always easy.  Steph has sacrificed a lot for me, but she says it has made her stronger.  Words can’t begin to express how blessed I am to not only have her as my little sister, but also a best friend!

***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.

There’s a saying that goes something like, “you can’t choose your family, but you can choose your friends.”  As I’ve alluded to in past entries, I’m incredibly blessed to have an absolutely wonderful family but I’m also very fortunate to have awesome friends.  For some people who have disabilities, finding true friends can be challenging. 

For me, since I have pretty severe limitations, it was hard to get people to understand that I was fully cognitively aware.  This was especially the case when I was younger.  It really helped that I was completely mainstreamed from Kindergarten on.  Each year, more and more classmates got to know me.  Teachers and educational assistants were great about making sure students included me.  In fact, I remember my very first day of first grade (I had switched schools because my parents were building a wheelchair accessible house in a different part of the city), my teacher (who I ironically had for two years of Early Childhood previously) took me out of my chair and sat me on a bench with her where she explained my disability to the class. I think that really helped.

Over the years, I made many great friends in school. They got to know me and understand my needs.  Like most kids, I had many “best friends” during my elementary school years.  These friends understood me  (I’m mostly  nonverbal)  and didn’t mind helping  me with things like feeding  and driving my chair (not that I needed help driving, but it was a cool thing to do back then).  They saw past my disability.  I got invited to things like birthday parties just like my peers.   Most of the time, my mom accompanied me to parties to assist me.  I also had many birthday parties and sleepovers.  I was in things like Girl Scouts too.  My parents were all about providing me with opportunities to socially interact. 

My junior high years were interesting years for me.  Because of where we lived, I went to a junior high school than most of my friends from elementary school—including my three “best friends.”  I did make friends during those years, but I also kept in touch with my best friends.  When we went to high school, we were all back together and it was awesome.  As I mentioned in a previous entry, even though I never had a date, I attended every school dance with my friends.  I’m still close friends with these girls today.

When I started at UW-Whitewater, I vaguely knew three people.  I laugh at that now because I have so many friends from college.  UW-Whitewater was different in that since it specialized in serving students with disabilities, it wasn’t unusual for students with disabilities to become friends with other students with disabilities.  In fact, it was more common than not. It  took me awhile to get used to because in my high school, I was practically the only student who had significant physical limitations who was in all regular classes; so for obvious reasons, I did my best  not to  associate myself with  those with cognitive disabilities.  In college, though, since there was such a variety of students with and without disabilities, I learned quickly that it didn’t matter.  Actually, it was very apparent that it was natural for those with similar circumstances to become friends.  I became friends with lots of people who had various types of abilities.  We were there for each other when limitations got in our way, and we also pushed and encouraged each other to reach our highest potential.

At UW-Whitewater, I also quickly became friends with a different group of people—my personal care assistants.  Yes, the care agency tried to prevent it from happening because it was “unethical,” but it’s almost inevitable not to become friends with someone who is helping you with your personal care needs.   Most of my care assistants were students as well, so it was just like I was hanging out with friends.  Obviously, not all of my assistants became close friends (and that’s ok), but I had a great group of girls who had my back.  We’d hang out and do things outside of my shifts.  I’d try to be conscious not to “use” them to help me outside of my shift times, but, to them, it was no big deal to help me with things when they weren’t working—to them, it was like helping a friend.  Like many college students, we’d stay out late and those girls had no problem throwing me in bed when we got back.  The care agency eventually gave up trying to stop our friendship and loved how close we were. 

Four of us became super close and remain close to this day.  We don’t see each other as often as we’d like, but it just makes the times we do get together more special. Recently, my parents and I attended a wedding of one of the girls.  The four girls were back together for a mere few hours, and, on the way home, my mom said, “those girls bring out something in you that no one else can.”   She’s right.  I can only hope our friendship lasts forever.

I understand that being friends with someone who has a physical disability takes some extra effort.  As we get older, my friends have to explain my disability to their significant others and children.  I’m sure that’s not an easy conversation to have, but they do it because they love me and want to remain friends.  Their boyfriends/husbands and children always seem to embrace the situation.  To me, that’s true friendship!

 Where would I be without my friends?  Honestly, it’s a scary thought.  I can’t begin to imagine my life without them.  I’m so incredibly blessed that they chose to become friends with me!

***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.

Like many Americans, I recently watched the opening ceremonies of the Summer Olympics.  I enjoy watching athletes from all of the different countries march in and listening to stories of the athletes.  Gymnastics, swimming, and diving are my favorite sports to watch during the Summer Olympics. 

Many people don’t realize this because they don’t get near the amount of media coverage that the regular ones do, but there are Olympics for people who have disabilities too.  The Paralympics are for people with physical disabilities and the Special Olympics are for people with cognitive disabilities.  People who participate in these are athletes just like people who participate in the regular Olympics.  Just like regular Olympians, these athletes spend countless hours training and competing.  In my opinion, it’s a real shame that the Paralympics and Special Olympics aren’t televised.   There are petitions going around on the Internet to try to get them televised, so maybe in the future, they will be!

Although my physical limitations are too severe to participate in many adaptive athletics, sports have been a part of my life ever since I was young.  My family and friends are avid football fans.  Each season, I setup and run a family football pool.  If there’s a NFL game on (doesn’t matter which teams are playing), chances are that I’ll be watching it.  I also follow college football and basketball pretty close too.  I absolutely love attending sporting events as well.  I’ve been to one pro football game and a few Badger football games.

In high school, I rarely missed a football or basketball (both boys and girls) game—home or away. I think by being a spectator at them, it helped my classmates accept me.  In fact, my senior year, I was invited to the Senior Sports Awards Banquet.  I received a sportsmanship award.  It’s a memory I will always treasure.  At UW-Whitewater, I continued to attend many of the football and basketball games as time allowed.  I also attended most of the wheelchair basketball games while I was there.  They have both a men’s and women’s team now.  I know the men’s team has won multiple national championships, and I think the women’s team is also pretty good.  It’s a pretty amazing sport to watch!

Growing up, I also watched my sister participate in various sports such as soccer and swimming.  Just as she attended hundreds of my therapy sessions, I attended hundreds of her soccer practices and games.  As she has gotten older, she has done some marathon and triathlon type events. She has expressed interested in sometime doing a race or something with me.  Many people with disabilities participate in various types of races with the help of a partner who pushes or pulls (in biking and swimming events) the person along.  My Team Triumph is a big organization in Wisconsin that pairs persons with disabilities up with a partner (they call them angels) who is willing to help.  While this is a great opportunity for some, personally, I wouldn’t feel comfortable participating in something like this.  I’m not comfortable highlighting my disability like that.  I think it’s great that people are willing to do that for others, but I would feel too awkward being in the spotlight for something I didn’t do.  People will disagree with me on this and that’s ok; I respect your opinion.

Although, I’m not able to physically participate in athletics, I think it’s good for me to actively follow sports. It’s a good way for me to socially connect with people.

Who’s ready for some football?!?!?!

***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.

Places such as Six Flags and Noah’s Ark are popular for many families.  Amusement parks and theme parks are usually fun relaxing places for most people.

That isn’t the case for people with physical disabilities.  Rollercoasters and many other rides aren’t accessible.  Even if I could get on a ride with assistance, because of my poor head control, I’m not allowed on most rides.

When my sister and I were younger, we did the Disney parks in Orlando, Florida.  We did a different park almost every year.  Disney is actually pretty accessible.  They do all they can for people with disabilities.  People with disabilities and their families are automatically moved to the front of the lines. I don’t agree with this policy for the most part. It made my family and I feel a little embarrassed when we were escorted to the front of lines when sometimes literally hundreds of people had been waiting hours for a ride or an attraction.  We didn’t feel right that just we got to go first just because I have a disability. 

In recent years, Disney has come under scrutiny regarding the policy. They’ve had issues with identifying people with disabilities and some people faking having a disability just so they could get to the front of the lines.  I believe there are some special circumstances where people should be granted the privilege of being at the front of the line.  When an individual is terminally ill and time is literally of essence, I believe they shouldn’t have to wait in lines.   I also think that there some unique circumstances when people have a very hard time waiting because of their intellectual disability.  I’m not sure how Disney (and other theme parks) can police this.  Maybe people get a note from their doctor and then get a card when they arrive at the park that identifies that they need that privilege.  That’s just my idea.

My family loves to go to Wisconsin Dells.  We love to swim.  Waterparks aren’t very wheelchair friendly. We went to Family Land (now Mount Olympus) quite often when we were little.  It was less hilly and a little bit more accessible than Noah’s Ark.  The wave pool and lazy river are my favorite!  The waterslides are really hard to access.  There are usually steep hills and stairs up to them.  I remember when I was really little, a few times my dad carried me up, handed me to my mom, he went down first so he could catch me when I came down with mom, and then I went down on mom’s lap.  That only happened a few times though because it took a lot to get me up there.  I absolutely love the wave pool because I can sit in an inner tube by myself and ride the waves.  Someone has to be right next to me in case the tube flips, but I just love it!  My parents and I recently went to Mount Olympus again for the first time in 10 or 15 years.  I was surprised that the accessibility hasn’t improved much.  In fact, in my opinion, it has gotten worse from how it was years ago.  Sure, they have accessible restrooms and changing rooms, but with all the new attractions and rides they’ve added (very few of which I could enjoy), it’s much more hilly and hard to get around.

I understand that when most amusement parks and waterparks are developed people with disabilities aren’t normally thought of as prime clientele, but we enjoy and deserve to have fun with our family and friends too.  I’ve recently read about how some amusement parks are becoming more disability friendly.  One theme park in Tennessee added a sensory room for those who have sensory disorders.  Other parks are making similar accommodations. To the best of my knowledge, there hasn’t been a wheelchair accessible rollercoaster made yet.  If there ever is, though, you can bet I’ll be the first in line!

Do I wish I could go on every ride just like everyone else?  Of course I do.  I would love nothing more than to be able to go to Six Flags for a day with a bunch of friends, but that’s just not possible.  I figure life is full of enough rollercoasters I can ride!

***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.

Everyone has stress.  There are multiple causes of stress.  Stress is a normal part of life and is even healthy to some extent.  Like everyone else, people with disabilities have stress.  In fact, I’d even bet we have more stress than the average person.  For me, personally, the past nine months have been very stressful.  Unlike many of my “normal” friends, I’m not worried about things like getting engaged, planning a wedding, having babies, or buying a house.  Instead, I’m worried about things like if my caretaker is going to show up to help me out of bed in the morning, help me use the restroom, or feed me meals.

Back in October, I wrote an entry about how I had to change care agencies because of the rule prohibiting people to hire third-party vendors through IRIS Self-Directed Personal Care (SDPC).  At the time, for many reasons, I didn’t want to take on the responsibility of hiring and scheduling my own staff; therefore, I found and switched to an agency that billed Medical Assistance.  Like I said in my previous entry, it was quite an adjustment because I had to get used to and train all new people.  When I wrote that entry, I was trying to be patient and give the agency time to figure things out.

In the nine months I had the agency, nothing has changed.  It was a complete nightmare.   For obvious reasons, I’m not going to disclose the name of the agency, but I’ve just had a multitude of problems with them.  From staff being late and not showing up for shifts, to having inadequate staff (on multiple levels), to not having a functional backup or on-call system… the list goes on and on. 

In winter, things got so ridiculous one weekend that I did something I’ve never done in all of the years I’ve had care agencies.  I asked my parents to come get me because I couldn’t handle it anymore—I was so frustrated!  Admittedly, I lost my patience.  After that, the agency promised that things would change, but really never did.  In fact, things got worse.  In addition to the issues I listed above, I had problems with theft and having untrained staff come in.  My parents and I tried to work with the agency to try to improve things by offering to do trainings, etc…, but nothing seemed to help.

By the end of March, I was down to have one person doing all of my shifts.  I have 28 personal care shifts and two supportive home care shifts per week.  It’s crazy to have one person doing all of that.  It was unhealthy for both the staff and I.  Plus, I had absolutely no backup staff.  The agency kept telling me that they were working on hiring more staff, but nothing ever came of it.

I began researching different options.  Basically, I found out my choices were very limited as there are very few care agencies in Oshkosh that bill Medical Assistance.  The agencies that did were known to be even worse than the one I had.  I even looked into the Managed Care Option (MCO) to see if I went on that (instead of IRIS) if I could go back to my previous care agency, but, as it turns out, that agency isn’t listed as a “personal care” agency under the MCO.

I was very hesitant about the hiring my own staff because I wasn’t too keen on all the responsibility that comes with it.  However, after talking with some of my friends who have been doing it for years, I decided to give it a try.  I wrote up an ad and posted it on Facebook a few times.  Friends shared it on their pages, and, amazingly, I got quite a few responses.  My mom helped me make some calls one morning, and we were able fill my whole summer schedule in a matter of hours.  I then met with my IRIS consultant and nurse to get the paperwork started.  I also met with each employee to do paperwork.  I’ve had a few hiccups with people (former agency staff) not passing the background check, but, again with some quick Facebook posting, I was able to find some new people.  I realize that hiring and scheduling people is going to be on-going responsibilities in my life now, but people tell me I’ll have much better luck. Only time will tell, but I’m excited to start this new chapter of my life!

So, while I may not stress about the same things that most of my peers do, I certainly do have stress. I’ve realized that stress about finding care staff is going to be part of my life.  I will do whatever it takes to live as independently 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.