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.