“You don’t know what you don’t know.“  Most people have heard a similar saying before.  We hear people say you should always keep learning.  When we are younger, we often think we know everything we need to know about life.  As we age, though, we realize that there is so much more to learn.  Whether it’s learning something new about your favorite sports team, your city, your vehicle, your neighbor, a health condition, a financial resource, or just a fun fact about something silly, we continue to learn every day.  People with disabilities are no different—in fact, it sometimes seems like we are forced to find out more information and figure complicated situations out more than the average person.

My parents and I used to consider ourselves pretty educated people when it came to navigating the whole “disability system.”  My mom worked in the special education field for over 40 years, my sister is an occupational therapist, and I’ve been pretty active in disability advocacy for a few years now.  One would think given that combination we’d have a pretty good handle on how everything works and what resources are available.  However, that couldn’t be further from reality. 

In recent months, we have found ourselves wide-eyed with new information, but yet having to go to great lengths to find other information.  It’s not just about one thing either—it’s multiple issues.  Obviously, we had to learn and the long-term care system years ago even before I graduated college.  My parents and I met the local Aging and Disability Resource Center (ADRC) where we were explained and given the choice of two options—IRIS or Family Care. IRIS sounded like the best option for me.  I vaguely remember picking my consultant, but I don’t think it was ever explained that I had a choice of what IRIS Consultant Agency and Fiscal Employment Agency I wanted.  I’m almost embarrassed to admit this, but it was well over five years after I started in IRIS before I realized I had those options.  I may have missed the boat on that, but information wasn’t readily available either.  Then, when care issues started to arise years ago, my consultant gave us all the resources and explained all she could, but there wasn’t Information easily available.  Now, yes, I understand that I choose to self-direct everything and that’s part of it; however, it’s really had to do without knowing what’s available.  Furthermore, last fall, when I just wanted to learn more information about Family Care and ask questions, the ADRC wouldn’t even meet with me unless I enrolled.

Long-term care is just one example of where I find myself still learning the hoops.  A few months ago, I visited my Independent Living Center.  They have an accessible model house that has all sorts of assistive devices, so I wanted to see if they had anything I could benefit from.  It turns out I already have a lot of the things they had, but I was talking with the assistive technology specialist about accessing my computer.  He mentioned that I may want to try eye gaze.  I had tried it many years ago and didn’t like it, but he said technology has come a long ways and that I may want to try it.  He explained I could get it funded through the Telecommunications Equipment Purchase Program (TEPP).  I had never heard of it before.  It’s a program through Wisconsin Public Service that funds assistive telecommunications equipment for people with disabilities.  The rep from the eye gaze company came and did a demo a few months ago.  I was able to try it, and I was able to successfully use it.  It was actually really cool—I will be able to control my computer with just my eyes.  We’re just waiting for my TEPP application to be processed and then I’ll be getting the equipment.  Not knowing about TEPP, I’ve probably missed out on some assistive technology equipment that would have made life easier.  Again, I don’t know how people are supposed to know about these programs.

Health care is another area where information seems scarce.  As I’ve explained in a previous entry, I started seeing a rehabilitation doctor a few months ago.  My neuro team was shocked when I told them I didn’t have one.  The rehab doctor sort of oversees my medical care.  I left the first appointment feeling like this should have happened years ago—not because I’m thrilled with all these extra appointments I’ve had, but because it may have been helpful in treating or preventing some of the issues I had.   My sister later explained that rehab doctors are a relatively new concept, but I feel like my regular doctor should have referred me.  Again, how are people supposed to know these are available?

Recently, my parents and I have started trying to figure out how my benefits will change when their benefits change.  We’ve found out that there’s a lot of confusion about this and people are being very misinformed.  After my parents made several phone calls and I talked to friends with similar circumstances, we’ve kind of have an idea of what needs to happen.  There isn’t a person that guides you through it.

It’d be a huge understatement to say we’ve learned a lot in the last few years.  There’s truly not a road map on this journey.  I’m truly blessed that my parents and I have the cognitive capability to navigate this curvy road together.  I’ll continue to do everything in my power to help others do so as well! 

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

Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth.  Usually, kids are pretty physically self-sufficient when they reach the age of four or five.  If all goes right, those physical capabilities last a lifetime.  Often, as people reach their senior years, they sometimes need more assistance again, but generally most people have at least 50 or 60 years where they’re physically able to take care of themselves.  For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming.

As I’ve explained in previous entries, cerebral palsy affects every part of my body.  I need complete assistance with all of my basic needs like toileting, bathing, and dressing.  My disability was caused from  complications during birth, so I’ve never known life any different—I’ve always needed quite a bit of help.  As a child, I guess I didn’t really realize how much assistance I required because it was never made into an issue.  My parents did all of my cares and we were a “normal” family.  I never went to any special camps or respite programs.  Family members took care of my sister and I occasionally while my parents went out to dinner or very occasionally on weekend get-a-ways.  Just like many other families do, we also had high school babysitters take care of us occasionally.  Though I didn’t realize it at the time because I was a kid, my parents had to do some extra training with them to ensue my needs would be met.  Those high school kids had to be pretty incredible people to agree to watch a kid with significant needs—I remember I loved the babysitters we had. 

When I first started school at the age of three, I was in Early Childhood programs, so there were lots of instructional assistants that helped all the students in the class.  When I entered Kindergarten, I was in a regular education classroom, so a one-on-one assistant was assigned to me to help me.  This person helped me with whatever I needed to succeed in school (getting books and equipment set up, taking notes, getting from one place to another, feeding, toileting—the list is endless).  I had some incredible assistants through the years.  I was amazingly blessed to have the same assistant with me second through twelfth grade.  That’s pretty unheard-of in today’s world.  We were very lucky that the district allowed us to stay together all the way through; we developed a very special relationship!  We are still close today.

Starting in junior high, a home health came in just for an hour or so after school just to get me off the bus, take me to the restroom, and give me a snack.  Like I discussed in a previous entry, this was the first time I had actual care aides taking care of me.  Though they didn’t really do many personal cares with me, I still had to develop a relationship with them.  Many of them were middle-aged woman, so they were like more babysitters to me, and I don’t mean that negatively.  Since they were older, though, looking back, that’s probably why I had very few problems with them.  They knew what needed to be done and understand the responsibility.  I still keep in touch some of them.

College was a whole different experience.  I obviously needed assistance with all my basic needs.  As I’ve talked about many times, the care agency I had in Whitewater hired a lot of students which was really cool.  Probably because I was young and a student as well I had very few problems with aides.  They knew what I needed and that I relied on them.  It rarely happened, but when there was a problem between a worker and I, the agency would often just take the person off of my schedule.  This was mainly possible because my friends would often pick up the shifts.  I admit I was probably a little spoiled down there!

When I moved to Oshkosh, the two agencies I had had a mixture of people working for them.  I then began to realize what I would be facing for the rest of my life.  It takes a special type of person to be a caregiver.  Some people have it and some don’t.  When I had problems with a person, the agencies would try to work the problem between us out.  Sometimes the intervention worked, but often it just made things worse.

Over the years, I’ve gotten much better at working with people.  Now that I’m hiring my own staff, I’ve realized that “good ones” are few and far between.  I’m not going to be friends with every person I hire and that’s ok.  I’ve learned that some people need to be told what to do and how to do it over and over.  Work ethnic widely varies, and professionalism is often lacking.  I have to have a lot of patience working with my staff as there’s a variety of personalities and attitudes.  It’s definitely a challenge.

Having to rely on others for assistance creates a unique lifestyle.  You have to be very patient; yet you have to be so organized.  I’ve realized that as frustrating as it is, this is something I’m going to have to deal with the rest of my life.  Admitting, sometimes I lose my cool on people who are trying to help, but I think everybody has moments of frustration—it’s part of life! 

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

Ever feel like there isn’t enough time in the day?  I think everybody has felt that way at some point.  Whether it’s juggling time between work and family, school and friends, volunteering and working, or just living life, we all have found ourselves trying to find a good balance.  Sometimes, it seems difficult to find time for everything.  People have to prioritize their activities based on what’s important to them.  For people with disabilities and health conditions, it’s no different.  Often, we have some additional things, such as appointments, treatments, and cares to juggle.

A couple of years ago, I wrote an entry about time management.  I explained how I have to be a very organized person and how I live a very scheduled life.    Everything from the time I get up in the morning, to when I eat each meal, to when I use the restroom throughout the day, to when I get back in bed at night… everything is scheduled.  It’s just the way it has to be since I live independently with the assistance of drop-in care aides.  I’ve gotten used to this and I have a routine that works well for me.  Having scheduled care times also means that I have to take advantage of my “free” time between shifts.  I have to make sure I get everything I need done between shifts.

Recently, I’ve found my schedule is getting more and more complicated.  In addition to my increased involvement in disability advocacy efforts, more health issues due to cerebral palsy have surfaced, and I’ve had more medical appointments in the past two months than I’ve ever had before.  After my unexpected surgery in early January, my neurosurgeon team referred me to a rehab doctor (he’s actually a physiatrist) to oversee my medical care.  I saw him first in early March and he referred me to multiple different doctors for various issues I’m having.  I admit, my parents and I weren’t sure what to expect going into the appointment, and it was a bit overwhelming getting all these different referrals.

Though it may change in the near future, my parents continue to drive and accompany me to my medical appointments.  My mom knows my schedule, so, for right now, she schedules all of my appointments.  We’ve had several already and have a few more in the coming weeks.  Each appointment often results in subsequent appointments or treatment.  We’ve learned that some issues are treatable, but some aren’t.  Cerebral Palsy is considered a non-aggressive condition, but the secondary effects of it often causes havoc as people get older. 

Some appointments result in ordering new equipment and additional personal care needs which means more meetings and appointments to get everything setup.  With more equipment and exercises comes the need for training for my staff which takes time not only to actually do, but also to setup and coordinate.  Right now, my mom and I are trying to figure out the best way to do this.  We’re going to probably end up setting up two training session that my staff can attend.  Since IRIS doesn’t really allow for training hours in my budget, I’m likely going to buy gift cards for those who attend.  

Obviously, these new things will increase the length of my personal care shifts and eventually change my whole routine.  Fortunately, I had my annual Self-Directed Personal Care screen in the middle of all this, so the nurse was able to capture all that’s happening.  My hours will increase quite a bit when my new plan starts in a few weeks.  I’ve been busy trying to figure how to reconfigure shift times to be able to do all these new things.  It’s tricky because I’m not exactly sure how long everything will take.  It’s going to be trial and error for a few months.

Between doctor appointments, meetings with people about equipment, doing paperwork, scheduling aides, and coordinating everything, I feel like disability-related issues have consumed my life lately.   After my mom made me another appointment a few weeks ago, I finally said to her, “I wonder how people find a balance between treatment and just living?”  When do you say enough is enough and just live life?

I don’t know the answer to that question.  On one hand, I know treatment and interventions will probably allow me to be more comfortable and live independently longer.  However, on the other hand, part of me wants to say forget it and just live life.   As I’ve explained in past entries, I normally don’t think of myself as having a disability, but, admittedly, having a disability has been very apparent in life lately.  I feel like I’ve overcome too many obstacles to let my disability completely take over my life.  I have to continue to strive to find the right balance, so I can live life to fullest! 

***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.

Have you ever been somewhere when you suddenly pause for a moment and think to yourself, “How did I get here?” Whether it’s laying in a hospital bed, walking on stage for a graduation, lining up for a play on the field of a packed football stadium, sitting in a courtroom awaiting the jury’s verdict, or in another situation, most people have experienced a moment where they have stepped back and thought about how they ended up in that situation.  Many times, those moments can feel like an epiphany to people.  Obviously, depending on the circumstances, it can be a positive or negative revolution.

I had one of those moments a few weeks ago while attending Independent Living Days in Madison.  As I mentioned in a previous entry, last year I was appointed to the Independent Living Council of Wisconsin.  The Council works together with the eight Independent Living Centers in Wisconsin to provide services and advocacy for people of all ages with all types of disabilities. The Council meets quarterly rotating visiting the Centers.  Due to transportation and care issues, I attended a couple last year via teleconference.  Fortunately, thanks to my parents, I’ve been able to attend the last three in-person.  The February meeting is usually held at the center in Madison because Independent Living Days are right after it.  After discussing it with my parents, my mom agreed to come along as my caretaker.  Being my first time attending, I wasn’t really sure exactly what Independent Living Days were.  After some emailing, I learned that it’s a two-day event- the first day is like a conference about Independent Living and the second day is meeting with legislators at the Capitol.  There was a teleconference beforehand about what messages and asks to bring to the legislators.  After the teleconference, I programmed all sorts of different things to say into my communication app.

Being a council member, I was in Madison for four nights.  Monday was our council meeting, Tuesday was an off day (the directors of the Centers had their meeting), and Wednesday and Thursday were Independent Living Days.  My sister and brother-in-law live in the Madison area, so I’ve been down there a few times, but this time my mom and I really got to explore the area which was fun. Tuesday, we walked around State Street and the Terrace which was neat.  We also were able to meet relatives for dinner a couple of the nights so that was nice.

Wednesday and Thursday were amazing.  The hotel where the conference was at Wednesday was full, so, since parking is such a mess is that area, mom and I walked from our hotel which was about a mile away.  Of course, it’s Wisconsin, so it was snowing that day which made the walk interesting.   They started the conference off by giving a brief history of Independent Living in Wisconsin.  Being relatively new to this, I found it very interesting.  The break-out sessions were more geared toward Independent Living Center staff, but it was great learning more about the services the Centers provide.  For me, it was absolutely awesome getting to network with so many people—especially people from my area.  In the evening, they had a dinner, an award ceremony, and karaoke, so it was fun to be able to socialize.

Thursday morning, we met at the Capitol bright and early.  I had only been in the Capitol one other time—the day before my sister’s wedding and we were only there for a few minutes.  I had never actually seen offices or rooms.  It was neat to see.  Each center setup visits with legislators from their area of the state.  People went in groups to each visit.  There was at least one employee from the Independent Living Center in every group and that person took the lead in back the conversation.  There were four main topics we were supposed to discuss: Healthcare, Mental Health, Transportation, and Independent Living funding.  Each category had several asks (mainly for more funding), but, as I learned, it was more important to explain to the legislators about what people with disabilities are struggling with and how more funding or supporting a certain bill or issue would help.  I was able to meet with five legislators (or a person from their staff) that morning.  During the visits, I often chimed in on the topic of healthcare sharing personal stories about the direct careworker shortage.  I feel like personal stories make most of an impact on people.  Unfortunately, the visits were only about 15 minutes each, so there wasn’t much time for each topic.  Each legislator was given a folder with information about the Independent Living Center and the topics we discussed.

After we were finished with our visits, we all met back in a huge courtroom to have lunch.  As I was conversing with some of my new friends, I had *that* moment.  How did I end up in the Capitol advocating for issues I wholeheartedly believe in?  How did I become such an advocate?  Twenty-five years ago, who would have ever thought that I’d be using my cell phone to not only converse with friends, but to speak with legislators about crucial issues people with disabilities face?   I couldn’t help but reflect on where life’s path has taken me.  Sure, there have been many curves, but, often, those curves lead me on new paths.

I can only hope we made an impact during our legislative visits that day.  For me, saying it was an eye-opening experience would be a huge understatement.  Being able to advocate on that level was truly amazing.  In recent years, I’ve become more involved in disability advocacy.  I only hope I can continue to do so—I believe it’s my purpose in life! 

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

Windchill warnings, polar vortex, below zero temperatures- people in Wisconsin have gotten very familiar with these terms recently.  Everybody knows winters in Wisconsin can be brutal.  Plowing out from a foot of snow is one thing; dealing with dangerously low temperatures and windchills is another.  Dangerously cold temperatures affect everyone.  From starting a vehicle early so it can warm up, to taking the dog out, to being called off work or having to find child care because school is canceled… bitter cold temperatures impact people in multiple ways.  For people with disabilities, extreme temperatures (cold or hot) often create some unique challenges.

While I’m a person who likes snow around the holiday season, I’m not a fan of cold weather.  Having a physical disability, cold temperatures cause challenges that an average person probably doesn’t even think about.  Bundling up often takes some work.  Due to my muscle spasticity because of cerebral palsy getting a winter jacket takes quite a bit of pulling and yanking from the person helping me.  As I’ve explained in previous entries, often when I want my body to move one way, it does the opposite; for example, when I want my arm to point straight out to get a coat on, it retracts.  It’s just how my body works.  Usually I’m also wearing a sweatshirt also, so that adds another issue; when I stick my arm in the coat, the sleeve of my sweatshirt often hikes way up my arm since I’m not able to hold onto it.  Somebody has put their hand up the arm once the coat is on to pull the sweatshirt sleeve down.  Coats are definitely a pain for me!

Gloves and hats cause similar problems.  I rarely ever wear gloves.  Getting gloves on me is like pulling teeth on a giraffe.  Because of my muscle contractors it’s nearly impossible to get my fingers in the right spots.  Even when we do get gloves on me, it’s not ideal because I sometimes can’t drive my wheelchair or use my phone (which serves as my communication device).  Hats and headbands often slide down due to my constant movements.

I think I may have written about this in an entry a few years ago, but while I was in college at UW-Whitewater, I never wore a jacket or gloves and hat to class.  People thought I was absolutely crazy, but I didn’t have anyone to help me dress and undress each time I went to and from class.  I’d get way too hot (especially in the dorms) if I wore my coat all day.  Looking back, it probably wasn’t the smartest thing to do, but I survived!

For people who have intellectual disabilities, the frigid cold weather is dangerous as well.  People may not understand why it’s so important to bundle up.  They may wander outside without realizing that it’s dangerously cold.  People may not understand why they aren’t able to do their normal routine.

Extreme temperatures impact other things for people with disabilities.  Below zero temperatures and windchills could cause health care professionals to be unable to get to work.  This can cause delays in service and care for people with disabilities.  Specialized and public transportation services many be delayed or stopped resulting in people missing work or appointments.  Day programs may be closed forcing family caregivers to have to miss work.  The list goes on and on.

Outside temperature can affect Some disabilities and health conditions.  For me, I’ve noticed that extreme cold causes havoc with my muscle tone.  I usually handle and enjoy warmer temperatures; however, when it gets really really hot, I’ve noticed my tolerance has decreased as I’ve gotten older.  I think it has to do with sitting in a black wheelchair seat all the time.  It gets pretty toasty!

Personally, I’d take a 95 degree day over a -50 degree day anyday.  As we all know, though, Wisconsin has four seasons, and with that comes a big temperature variance.  Some people like the cold weather; some people enjoy the really warm weather.  I guess we get a bit of everything in this state.  I say, BRING ON SPRING!!! 

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

Ever feel like you’re on an uphill battle with no clear end in sight?  I think everybody has at some point in their life.  Whether it’s with health issues, relationship issues, financial issues, work issues, or a combination of things, most people face some kind of adversity during life.  I like Robin Roberts’ quote: “Everybody has something.”  Although it may seem like it, nobody has a perfect life.  Every single person has some adversity.  Obviously, there are many different perceptions when it comes to the challenges people face.  What may be a major crisis to one person, might seem like a small bump in the road to somebody else.  It’s often assumed that people with disabilities face more challenges than the average person.  Regardless of what the issue may be, facing adversity is part of life.

Why am I writing another entry about dealing with adversity?  It seems like it’s often the general topic of most of my articles, right?  Yes, I’m well aware of that; it’s my hope that I’m helping spread awareness by sharing my perspective and experiences.  I feel that facing adversity and sharing how one perseveres through it is a key part of advocacy.

The past two months, I’ve faced my fair share of challenges.  In past entries, I’ve discussed how my parents and I were looking into different care options.  Long story short, in the beginning of November, we thought we had found a home care agency that billed Medical Assistance that could meet my needs.  My mom and I met with the nurse in mid-November and did the initial assessment.  Many calls and emails with the scheduler were done, and it was eventually decided that their workers would shadow my Self-Directed Personal Care (SDPC) workers the first two weeks of December and then the agency would take over the first week of January.  I had a planned surgery scheduled in mid-December and had planned to be at my parents a few weeks recovering over the holiday season.  I thought things were lining up just perfectly.  I’d end with my SDPC workers (besides my parents) right before surgery, have the surgery, recover and enjoy the holidays at my parents, and start with the agency in the new year.

In late November, I had to let my SDPC workers know that people from an agency would be coming in to shadow and that the agency would be taking over in January.  It was really hard making that announcement.  I felt absolutely horrible having to let them go, but I was hopeful that this would be the answer to my situation.  December came and the agency started shadowing.  They had four or five people come in during various shifts.  Admittedly, it was a little awkward having the agency workers observe the people who were losing their jobs, but the workers understood and made the best of the situation.  It’s never easy having new people take care of you, but training was going ok until the second week in someone from the agency said, “we can’t give meds, so I don’t know what they’re going to do.” Wait!  What?  I take multiple medications each morning.  Obviously, I can tell people which medication I need, but I physically am not able to put pills in my mouth.  I had my mom call the office right away and she left a message asking about it.  A few hours I received an email saying that was correct—their workers cannot give medication.  They wondered if I could have somebody come in and do meds each morning before the morning shift.  That totally defeats the purpose of having an agency!  With other agencies I’ve had, they’ve had a nurse set up the meds in pill containers for two-week time periods, and then the workers could give me pills out of the container rather than from the med bottles; however, this agency didn’t even allow that.  There was some major miscommunication along the way because when mom and I initially met with the nurse, she physically had the pill bottles in her hand and wrote down each medication, but never said their workers couldn’t give meds (and we discussed how I have to have somebody feed me).  Furthermore, what’s crazy is that med administration is listed as a class they offer for workers on their website!  After I got the email, I called my parents freaking out—what were we going to do?  I had given the four or five SDPC notice and hadn’t hired anyone new in months anticipating switching to an agency.  Luckily, my great parents drove up and we devised a plan.  I had no choice, but to stay on SDPC and keep hiring my own workers.  Thankfully, about three of my workers were still interested in working with me.  We’re back to hiring people and scrambling to fill shifts, but it’s our only option at this point.  This not only affects me, it also affects my parents.  Especially with the cold weather here, being newly retired, they desperately want to travel; however, with the uncertainty of my care situation, they can’t leave the state.  It’s very frustrating for both them and I.

In addition to the care debacle, I’ve had some unforeseen health issues arise.  The planned surgery in December to replace my Baclofen pump (which drips a muscle relaxant into my spinal fluid) went fine, but a few weeks later, my muscle spasticity went haywire.  After trips to the ER and multiple tests, it was thought I needed another surgery to correct the pump.  They went in and checked everything out; it turns out everything looked fine.  They aren’t sure what caused the drastic increase in spasticity, but now I have steps I can take to help decrease it when it happens.  While I’m glad we have solutions to help with the issue, it’s just one more side effect of cerebral palsy to deal with.

My wish for a fresh start in 2019 didn’t happen like I had hoped.  In fact, its been just the opposite.  Life throws people all different kinds of curves.  People deal with challenges in many different ways; some good, some bad.  People’s true colors show when they’re faced with adversity.  Although, very hard to do at times, when we’re faced with unforeseen challenges, we must put one foot in front of the other and persevere. 

***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’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.

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.