I turn 30 next week. I cant help but take a few moments to reflect on my 20s. To say a lot has happened in this decade of my life would be a huge understatement. I graduated from UW-Whitewater, moved into my own apartment, and landed a job just to name a few highlights. For most 30 year olds, milestones such as those things are often taken for granted, but for people with significant limitations, like myself, they become much bigger accomplishments we learn to cherish. With that said, this decade has also brought many challenges and obstacles for me.

Until age 26, besides having Cerebral Palsy, I was a relatively healthy lady. I saw my primary doctor for a physical annually, but that was pretty much the extent of my medical appointments. When I hit 26, it was like a switch flipped in my body. I need to mention thiswhen I moved back in with my parents after graduating college, I continued to receive physical therapy once per week. At the time, since I was 25, I was still on my parents insurance. After a few months of receiving therapy in Fond du Lac, the insurance companies decided my treatments were preventative instead of rehabilitative. In other words, in their eyes therapy wasnt going to help me get better anymore, and therefore, they stopped paying. We checked into all the options, but, in the end, I had to stop therapy. Up until that point, I had had physical therapy at least once per week since I was eight months old. Although, there is no way to prove it, I feel as if stopping therapy caused some of my medical issues.

When I turned 26, I switched to being on straight Medicaid. Because of my disability, I had always qualified for Medicaid, but since I was always covered by my parents insurance, Medicaid had been like the last resort. Now, its my primary and only insurance. Before I switched over, I was a little nervous because I had heard many nightmare stories from friends who were on the so called system. Little did I know how thankful Id be to have that coverage just a short time later.

In summer 2011, it all started when I somehow broke my wrist. I went to the doctor and while there she referred me to a pain doctor because my muscle tone had gotten pretty bad. To make a long story short, after that appointment, while on vacation in Florida, I ended up in the hospital with an infection. It was thought to be an one-time thing, but I was back in the ER days after we returned home with the same symptoms. I was referred to a gastroenterologist and had tests done. The problem was thought to be found and I was put on medication to fix it. While all this was going on, I also had a mysterious rash all over my body. After a few trips to urgent care and trying different medications, I was referred to a dermatologist. Eventually, with medication, thankfully the rash did clear up. I finally saw the pain doctor after the holidays; she referred me to a neurologist in Neenah to be evaluated for a Baclofen pump (its a surgically inserted pump that releases medicine directly into the spinal fluid to relax the muscles). I saw him that March, and I had a test spinal tap done in April (that too ended up being a fiasco as I got spinal headaches as a result of it and needed a blood patch). It was decided a Baclofen pump would benefit me. I had the surgery in July 2012 and it was very successful; it helped me so much. I thought I was finally back to being healthy, but just a mere three weeks later, I was back in the ER with excruciating stomach pains. I ended up having emergency surgery which we later found out was literally life-saving. I spent 11 days in the hospital. Since then, Ive been admitted for more tests and had another emergency surgery related to it. Ive had very minimum copays, but Medicaid has paid literally hundreds of thousands of dollars in medical bills for me without a fight. Knock on wood, Ive been pretty healthy for over a year now, but, needless to say, Im very thankful to have coverage!

Im just now beginning the process of getting a new power wheelchair. This will be my first one through Medicaid. I was very fortunate to have had my parents insurance pay for all my chairs in the past. I didnt know how the process worked, so I asked my friends on Facebook. Basically, I got varying answers. My mom has a call into the wheelchair place to setup an eval and get the process started. Ive been warned it may take awhile, so Im prepared to wait.

Learning how the long-term care and healthcare system works is crucial for people with disabilities. Im still learning the ropes. Ive learned that its very important to ask questions and advocate for whats best for yourself.

In closing, I hope this next decade will be better medically. I cant even put into words how much I learned about life in my 20s. I learned just how important self-advocacy really is. I have no choice but to keep advocating for not only myself but for all people with all people with disabilities. Its the only way were going to be able to get the appropriate support we need in order to lead successful lives!

Heres to the next 30 years!

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

When I sit back and reflect on my employment journey, I cant help but think about how crazy it has been. Before I move on, I want to mention that at the age of four, an insurance company deemed me unemployable without even meeting me! At four years old they made that determination! Of course, I dont really remember it, but thats what my parents tell me. That always has stuck in the back of my mind.

My employment journeystarted back in 2009 after I graduated from UW-Whitewater. Actually, I should mention thatI had the opportunity to write a column in The Fond du Lac Reporter for about two years while I was in Whitewater. I wrote every other week about having a physical disability. It was all volunteer, but the exposure was incredible. I also was an online mentor for students with disabilities starting the year before I graduated. It was through Midwest Alliance.I helped them with such things as goal setting, accommodations, study skills, self-advocacy skills, and transitioning.I did that for just over three years, and had 8 or 9 students.After graduating, I continued to work with the Department of Vocational Rehabilitation (DVR) to try to find employment. I had been a client of DVR since my junior year of high school. They helped me get setup with my accommodations I needed at Whitewater.

After I graduated college, I lived at my parents in Fond du Lac to start with, so I was with the Fond du Lac DVR. They hired an employment vendor to try to help me find employment. They helped me get a work experience with an advertising agency in Appleton. I designed ads for a coupon magazine from home. I loved doing it, but, unfortunately, the company wasn't in place to hire me at the time. After that, the employmentvendor basically left me hanging. Long story short, for the next year, I was basically applied for jobs on my own and checkedin with DVR every so often. Eventually, DVR put me on a waiting list for customized employment through Clarity Care.

I moved to Oshkosh in February 2011 and started with DVR in Winnebago County. Shortly after, Istarted Customized Employment with Clarity Care. I went through their program steps which included such things as doing an employment profile, creating a visual resume, and creating a portfolio, so we could show employers my work. We tried getting some work experiences, but didnt have any luck. In February 2012, I went to a breakout session about Vocational Futures Planning and Support (VFPS) at the Transition Conference.VFPS is a specific approach meant for people with physical disabilities. Mom and I talked to the founders after the session and I brought the information back to Clarity Care and DVR. There was nobody in my partof the state trained on VFPS, so Clarity Care bought the training and one of the founders trained them using me as an example. It was interesting too because I was the first IRIS participant to go through it which made a difference with funding.

VFPS is a multi-step team approach that looks at all aspects of my life and basically assesses all my barriers. Because of my situation, we weren't able to follow VFPS exactly. We did what was appropriate for me. I had an assistive technology evaluation done which was when I got my Ipad for communication. I also got a whole new computer setup which included things such as two computer screens, new updated design software, and an accessible computer table. Everything I needed so I would be ready to work. I also had a benefits analysis done to learn how income would affect my benefits. I created an online portfolio to show potential employers my work. We also did a couple of informational interviews, so I could ask questions of employers so I could get a better understanding of what they were looking for.

We tried getting some work experiences, but again we didnt have much luck. In October 2012, I was told I had a job designing ads for a coupon mailer. I was toldit wasn'tjust an experience; it was apermanentjob at first. Well, over the course of four months, there were several miscommunications and I was told several different things. In the end, it endedup being a work experience which ended up not leading to a job.While I was grateful for the opportunity, this was so incredibly frustrating. In the middle of the experience, one of the people trained on VFPS left Clarity Care. Soon after, the other person who was trained left also. It was unbelievable! I admit, after that fiasco, it took me a couple of weeks to clear my head and refocus. Eventually, with the support of my employment team and my family, Istarted my own business and did some freelance things. I do freelance graphic design and social media. Its called Design Wheels. I advertise on places such as Craigslist and Facebook.

Then, last March, I received an email encouraging me to apply for the Online Community Network Manager position for InControl Wisconsin. I applied, had an interview, and was offered the position. Its really ideal for me. Im able to work from home, and, obviously, its something Im really passionate about. June 1^st will mark one year of being employed by InControl Wisconsin.

In December, after 14 years, we were able to successfully close my DVR case. Given, the severity of my limitations, people tell me its a pretty amazing achievement. It had been always a goal of mine to prove that insurance company wrong. I knew I couldif given the chance!

When I think about my journey, although there were many times wanted to give up, Im so glad I didnt! I encourage people to keep pursuing their dreams even if people tell you they will never happen. With perseverance and determination, anything is 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.

It was May 2009. I had just graduated from UW-Whitewater. As our van pulled out of Whitewater for the final time, I was overcome with emotion. UW-Whitewater gave me so much more than just a degree. It made me become so much more independent and self-confident. I proved to myself and others that if given the right supports, I could live independently. Like many college graduates, I moved back in with my parents.

When I moved back to Fond du Lac, I thought finding a care agency and an apartment would not be that difficult. I couldnt have been more wrong! It was a nightmare. Finding cares was not an easy task--especially in Fond du Lac! Before I could even really look for apartments, I had to get cares lined up first because I could not live on my own without assistance. For various reasons, agencies could not staff my shifts. In the year and a half I was at my parents, we tried two different agencies, and the most we ever got covered was two shifts per day (I need four care shifts per daygetup, lunch, dinner, and bed). This was unbelievably frustrating.

In summer 2010, I began researching different living options on the internet. I came across Cerebral Palsy of Mideast Wisconsins Independent Living website. My mom and I came to tour an apartment late that August. Its in Oshkosh--about 20 minutes away from Fondy. I admit, I was skeptical because I am not particularly fond of the idea of segregating people with disabilities. However, when I saw the setup of the Willo Apartments, I was very impressed! The Willos are actually three long buildings, with four apartments in each one. All of the apartments have two bedrooms. Some have two clients in them, but most have one person with a disability living there. The units are so accessible and, although all the residents have disabilities, its nothing like a group home. After we toured, I knew this was where I wanted to be.

Its very unique as Cerebral Palsy of Mideast Wisconsin is a care agency. Residents of the Willos arent required to use their agency, but they can if they choose to. For me, this was key. Although, I could have hired my own workers because Im in IRIS, at the time, my family and I felt more comfortable going through an agency.

Its subsidized housing, so, of course, there was a wait list. Fortunately, one became available in December 2010, and I was next on the list. Some renovations needed to be done to the unit and cares needed to be setup, so I moved in in February 2011. After such a frustrating year and a half in Fond du Lac, I was thrilled to be on my own again.

Living here for over four years now, Im still pretty pleased most of the time. I have the independence I need. The fact that Im only about a half hour from my parents has been greatespecially since I had some serious health issues in the recent years. I love my apartment. However, Im not sure its my forever home. Although, I love my neighbors, at times I feel pretty segregated. I think Id like to be in a little bigger city that has more to offer. I dont plan to move anytime in the near future, but maybe someday. Once all this budget stuff gets settled, I plan to reevaluate my living situation from a few different angles and possibly make some changes. Well see what happens.

Living independently is so important to me. In my opinion, everyone should be able to choose where they live and who they live with. What are your thoughts on this?

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.

Stacys Journal: State Budget Proposal

By now, Im sure many of you have heard about how Governor Walkers biennial budget proposal would affect people with disabilities. Ill be the first to admit Im not big into politics, so when I first heard rumors about the proposed cuts, I wasnt overly concerned. However, when I kept hearing about the impact it would have on people with disabilities, I decided to take a closer look. I was appalled by what I found! I strongly encourage you to take a look at the information that is on Wisconsin Budget Proposal page.

After learning how the proposed budget would impact my life, I decided I needed to take action. After emailing my legislators and sending a letter to Governor Walker, I contacted my hometown newspaper, The Fond du Lac Reporter. They agreed to let me write a commentary on the topic. I really encourage you to share your thoughts and opinions about the budget proposal on the Network too.

Cuts will significantly affect people with disabilities

I'm 29 years old and live in Oshkosh.

I have a bachelor of arts degree in journalism with an emphasis in advertising from University of Wisconsin-Whitewater. I live by myself in an apartment and am able to handle my own finances.

I started my own business doing freelance graphic design and social media. I'm also independently contracted with In Control Wisconsin and work as their online community network manager.

This probably doesn't seem like anything out of the ordinary until I share that I have a severe physical disability. Due to complications at birth, I have Athetoid Cerebral Palsy. I rely on an electric wheelchair to get around and use a communication device to communicate. I need assistance with all of my basic needs such as bathing, toileting, dressing and feeding.

I've been in the IRIS Include, Respect, I Self-Direct program for just over four years. I self-direct everything from my personal cares to my finances. Having control over everything and being able to self-direct my care has made me as independent as I can be.

Having independence is so important for people with similar situations like mine. Being able to have choices about which service providers we want to use and to decide where and how our funding is used is critical to our independence.

IRIS is a long-term care program financed with state and federal funds. Participants self-direct their supports. This means they have choice and control over which service providers they use and how funds are spent. It provides opportunities to create efficient use of tax dollars through small local personal control.

In Gov. Scott Walker's proposed budget, it suggests that the IRIS program be eliminated. Individuals using the IRIS will reportedly be moved to a proposed less flexible, larger government-driven model. IRIS is a smaller-government, locally controlled model that respects Wisconsin citizens' ability to make responsible decisions.

Eliminating the IRIS program would drastically impact my life in a negative way. It would take away independence that I continue to strive for. After years of self-directing everything myself, having other people dictate how my money is spent and what providers I use would be a huge slap in the face. People who want to self-direct their funding and supports should be able to continue to do so.

Furthermore, the proposed budget suggests major cuts in funding for personal care. Many people with disabilities myself included could not survive without personal care assistance. I'm not able to even take a sip of water without help.

Cutting personal care funds would significantly affect the lives of people with disabilities. We, as human beings, should have the right to the care we need so we can lead as successful lives as possible.

So, I kindly ask that legislators keep how it would affect the lives of people with disabilities in mind while considering the budget proposal. We're not asking you to move mountains. We just want to have the appropriate supports so we can live our lives to the fullest.

Stacy Ellingen is a former Fond du Lac resident now living independently in Oshkosh.

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.

Stacys Journal: Introduction

Hi! My name is Stacy Ellingen. As many of you may know, Im the Online Community Network Manager for In-Control Wisconsin. In hopes initiating more conversation among our communities, Im going to be journaling about some of my personal experiences and thoughts about different topics related to the networks. By doing this, I hope it will inspire and encourage you to share some of your experiences as well.

To begin, I thought Id tell you a little bit about myself. Im 29 years old and Im from Fond du Lac, Wisconsin. I have a Bachelors of Arts degree in Journalism with an emphasis in Advertising from UW-Whitewater. In addition to being a Network Manager for In Control, I also started my own business doing freelance graphic design and social media. My journey to employment was pretty incredible, but that will be another whole journal entry.

Due to complications at birth, I have Athetoid Cerebral Palsy. I use a power wheelchair to get around and a communication device to communicate. I need assistance with all of my basic needs such as bathing, dressing, toileting, and feeding. I live in my own apartment in Oshkosh and have care givers come in to assist me a couple of times per day.

Having a disability isnt easy by any means, but its not the worst thing in the world. Ive learned the importance of self-determination and self-advocacy over the years. I wouldnt be where I am today if I didnt advocate for myself. Many of us continue to have to fight the system in order to receive the supports we need to lead successful lives. I feel that its my responsibility to advocate for those who arent able to.

Im looking forward to sharing some of my experiences with you. My hope is that this will lead to good conversation. I encourage you to ask questions and share your story as well. We can learn so much from each other. That is what networking is all about!

Hi! My name is Stacy Ellingen. I am the new Community Network Manager for the Self Determination Network and the Employment Network. I am a graduate of University of Wisconsin-Whitewater and have knowledge about services, resources, etc there are available for people with disabilities. Personally speaking, I have experienced and overcame many challenges and barriers. Im hoping to be able to use my experiences to help others. Over the last few years, Ive learned the benefits of networking both on a personal and professional level. I believe networking is a key to success not only to those who happen to have disabilities, but for all people. Please feel free to send me your thoughts, ideas, and questions. I look forward to getting to know you!